Inspiring Hearts

Adventures in Social Security Disability Part 2

2011-02-21T18:47:00.000-05:00

First off the people reviewing your case are not medical professional and most cases are denied because the medical document isn’t clear to point out what the disability is. So that is where the letter from your cardiologist is essential. Now Social Security Disability determines if you are disabled by a thing that is called a blue book. Unfortunately however the congenital heart disease section is very out to date and really refers cyanotic patients. I have to say I am still cyanotic so the section does refer to my condition. There are two books one for adults and one for children so if you’re over 18 refer to adults

Here is a link to the blue book
http://www.socialsecurity.gov/disability/professionals/bluebook/AdultListings.htm

My advice is to pretty much print out the whole cardiovascular section and bring it with you to the doctors. Also any other conditions you might have like respiratory conditions (i.e. pulmonary hypertension) .Now this is the social security disability bible so to speak this is how the case workers first determine if you are even classified as disabled so this is extremely important

After gathering the blue book info sit with your doctor to compose your letter. This may take a while so I would let the doctor office know why you are coming and it will probably take an hour or so to compose the letter. I preferred to do this with my doctor so I knew that I got everything I needed in the letter so I didn’t have to bother him for rewrites. Also many doctors are not sure what to write.

• The first paragraph of the letter should state how long the doctor has known you and how long you have been treated for such a condition at that hospital. According to the blue book the last 5 years of medical information is the important determination on getting approved. So have doctors who know your medical condition and treated you the most in that time period write the letter.

• The second paragraph should be basic vital signs, age, work history diagnosis and severity of condition

• Third paragraph is where the blue book comes in handy Have doctor review each section then outline the listings that your condition meet. Have you doctor list each listing that your meet and explain how you meet them and the medical documentation to back them up. For example

Patient meets listing 4.06 of the blue book – Patient has cyanosis current at rest Oxygen saturation level is 85% which leads to a hematocrit of 60 measured on the latest blood work that was obtained 10/10/10 , 7/20/09 please see attached office notes in the lab work sections.

It is really important that your doctor not only says the listing that you meet but the evidence behind it so it is easy for the agent to review medical documents Also the blue book does state in it sections which tests they will take to back up the evidence you have such condition. Most are typical test people with CHD have had like ECO, EKG, and cardiac caths

If you don’t exactly meet the criteria of a listing have your doctor show evidence close to the listing and the severity of it and how it affects you.

• Last paragraph the doctor should close with how long your impairment shall last for example:

Patient’s current medical limitiaons, as outlined does not permit that he/she sits, stands or walks for 8 hours a day. This impairment will last for life, as he/.she does not have therapeutic options available.

Then have your doctor give you copies of the medical record they have especially the ones that are referred to in said letter. I gave all documents to my agent at the social security office when I applied, but if you apply online I advise mailing the information as soon as you apply.

Now Disability is decided by the state you live in some states are tougher than others for example Massachusetts really is determined by the severity even if the listing are not meet exactly but in California they seem to base approval on the listing being met.
Getting approved is very hard and getting approved the first time is somewhat of a miracle. I have to say I had one of those miracles but I think it is really important to do your homework, and get the necessary documentation. Do not leave it up to the social security office to get the necessary document from your doctors, it can take month and can cause you to not be approved due to lack of evidence.

Also once you apply you will probably receive a questionnaire on your abilities to do daily tasks and you only have a certain period fill out the document and send it back so be sure to meet all deadlines set by the social security office.

The social security office has 5 months waiting period before you can start getting benefits and it the usual waiting period of knowing whether you have been approved or not is about 3 to 5 months.

I want to thank other CHD patients who have applied for SSDI and especially Dr Paul Quck who sent me invaluable information that helped me understand the application process.

Adventures in Social Security Disability Part 1

2011-02-16T09:00:00.002-05:00

Applying for Social Security Disability is not an easy process. Like anything it is about preparing, and knowing what you need to send along with your application.
http://www.ssa.gov/applyfordisability/

First off there are two disability benefits you are applying to Social Security Disability (SSDI), and Supplemental Security Income (SSI). For adults or kids who never worked they get SSI and for people who worked and have enough work credits you will receive SSDI. Some will be able to receive both. However the maximum SSI is about $700 per person a month and any money from SSDI is subtracted. For example you have SSDI which pays $1000 .00 a month, then you will not receive SSI because you are getting more than $700.00. But if you had $400 from SSD a month then you could also earn $300. Getting SSI is tricky because there are rules like you can’t have over $2000 in liquid assets which included bank accounts and retirement funds so you would need to liquefy them to just qualify.

If you are working and paying out to social security every year you will receive a summary in the mail from social security pretty much telling you how much you have paid out and there will be a section on if you are disable today here is what the estimated payment, also it will show you the estimated payment at retirement age. That is the best indicator of what you will be paid month from SSDI. If you need to request a statement here is the link http://www.ssa.gov/mystatement/

So as for applying there is an online application form or you can do it in person. I have to say I went in person, mostly because I wanted to give the agent all the information I had, so I didn’t have to worry about getting things mailed and having them going to the right person. I realize that many don’t live near a social security office, so doing it online is the only option. Now filling out the application is not the hard part believes me, and it is not even the most important part. It is what you need your cardiologist to do that is the most important. I advise anyone going through the application process visit your cardiologist before applying and have them write a letter and give you the important medical records documenting those things highlighted in the letter (explanation to come).
To Be Continued…

Blog List

2011-02-15T14:47:00.001-05:00

I will start linking other heart realted blogs from other adults and parent of Congenital Heart Disease patients. If you would like to be on my blog list please comment or email me at inspiringheartstories@gmail.com.

Teri

I celebrate the person I have become from knowing him

2011-02-13T16:31:00.004-05:00

Robert Kimani Mungai was born Nov 3 1975 and passed away on Feb 13th 2007 from CHD. Kimmie was the first person with CHD I actually connected with. Growing up there weren’t many of us around and most were a lot younger then I. It wasn’t until college in one fateful night which brought us into the same dorm room. Where he whispered in my ear “I know you’re secret” then lifted my hand and said my nails use to be blue too.

Kimani and I were an odd couple he was 6’3 from Kenya and I was 5’2 from Massachusetts US but we had the same story. Kimmie taught me about living life despite of our heart issues. He was constantly moving forward and having a CHD was an afterthought. He always had something he was planning, something to say, and a Kenyan story to go along with it. He always believed in now, and moving to the future.

He use to joke that his CHD was like a paper cut compared to mine but yet he died at age 31, and here I am at age 32. It makes you realize that any CHD can be deadly at anytime of your life, but it doesn’t mean you have to stop fighting for your dreams. So today I celebrate the person I have become from knowing him and I still carry on the fight.
Teri (HRHS)

To the ones we lost this year!

2011-02-07T22:02:00.001-05:00

Here we are again, Congenital Heart Disease Awareness Week, this past year we have been able to pass the Congenital Heart Future Act with the combined forces of the Adult Congenital Heart Association and the Children’s Heart Foundation among other advocacy groups. A victory that was years in the making and now the hard work will begin in trying to make a bill a reality.

As much as I like to promote awareness this week as a survivor, I find this week a sobering time for a few reasons, but mostly it is when I reflect on the ones that we have lost. It has been a hard year in the CHD community especially for its teens and adults. Many of my friends who I only knew from Facebook or through this blog who were teens that looked up to our stories of surviving, have passed away, and most of them were sudden deaths that didn’t have much explanation other then the fact that congenital heart disease can take you anytime. It is hard to accept that fact especially the older I get because I truly value each day I wake up and get to do the things I love and to have that suddenly stop is a thought that until this year didn’t seem so close to home.

As we enter Awareness week we all feel like we lost a cheerleader who railed us all year long. Who told us the hard facts with humor and southern charm. You always seemed to know when Steve Catoe was in the room because laughter sprung up around him. He was so good at poking fun at life with congenital heart disease but followed that up with passion that made you think he was ready to lead us into a battle. With his sudden passing just two months ago we all took a pause in our lives to mourn him but to also realize how precious our lives our bodies are and the fine line we battle every day.

So as we start awareness week I remember the ones that didn’t make it but believe like they did that we must carry on without them. Their lives will forever change who we are, and help us be better people and dream bigger and fight harder. So today I dedicate to all the warriors who were lost this year for they are our true hero’s and forever will be in our hearts.

Teri(HRHS)

Why are you a planner?

2011-01-23T00:40:00.003-05:00

One of my best friends asked me a few years ago in frustration, why I was such a planner, and I should relax a bit. I took this to heart, I wanted to explain to him why I planned things and why it was important to me, but I didn’t say anything, just said I will try to be more laid back. It took me a while to really figure out the answer to that question. For years I thought my planning was a control thing, like I can’t control my body, my heart especially . I always wondered why I got so upset when things didn’t go as they are planned and my friend never understood why I made such a big deal out of things.

I realized it had nothing to do with control; it is how I have to live. See waking up and getting out of bed going to work, coming home, going out with friends, these are things people do every day without thinking about it. Without planning their next move without having to carefully navigate throughout the day and decide what needs to be done apart from what should or even wanting to do.

Living with a chronic illness however is not like that. Every move we make cost us, we have to choose carefully what we are to do that day so we have enough of ourselves at the end of the day to lay back down to sleep and do it all over again. I have to choose who and how I will spend my energy I have that day. I can’t just wake up and clean the house, grocery shop, do laundry and then go out with my friends because my body won’t allow me to do all those things. I have to make the choice of going to the grocery store or going to dinner with a friend. I can’t stay out too late because if I do I will not be able to get out of bed tomorrow in time for work. If it is too cold, or too hot then I cannot do my chores, I must stay in because just the act of walking outside to go to a store would drain me of all the energy I have that day and I would find myself spending days in bed trying to recover. I am a planner because I am only allotted so much each day by my body.

For people that don’t have a chronic illness this idea of having to choose, to having to plan to know what is like to be sick well I think the “Spoon Theory” says it the best. If you love someone with CHD or any other chronic illness take the time to read the Spoon Theory then tomorrow when you open your eyes think about what life would be if you had to count spoons

Teri (HRHS)

Happy New Year!

2011-01-03T13:48:00.003-05:00

For me 2010 was the year of challenges, where everything I spent trying to accomplish most of my life ended, due to the fact my heart could no longer take on the challenges I posed to it on a daily basis. I had face life becoming a disable person at age 31, moving out of the city I always dreamed of living in for the rest of my life. It was a year of trying to find who I was without having the dreams I worked so hard to accomplish. This year started with a huge transition from moving out of my apartment of 10 years into a brand new condo north of the city (I have to admit I love my new home so much more but I do miss my old neighborhood and of course the city itself, I do visit a lot since I am going to the hospital every month).

I spent the winter and spring taking a much needed rest from the toll I had put on my body for 11 years of working full time and before that the rigors of college life. However this summer it became apparent pretty quickly to me once I was well rested and didn’t seem to know what to do with myself. Granted I have kept myself busy but am I fulfilled? I still don’t know the answer to that questions so I am guess the answer is no.

I keep thinking back to when I was this 14 year old girl that had just gone through the heart surgery that if she didn’t have it would soon be dead and if she did have it would have to fight with everything she had to make it. Little did that 14 year old girl know that everything meant; everything she believed in or thought about herself and the world. So at 32 I keep coming back to the time when I had just arrived home after a month being in the hospital and my first shower at home and I stood in the bathroom and saw this girls reflection in the mirror, and the wiped the steam away not believing what I saw and there stood a girl staring back at me and I had no idea who she was.

I guess I feel like that 14 year old again not knowing who I am without a job to go to everyday, a set schedule and focus and all that brings with the freedom of making a living. I spent the last few years traveling all over the world, standing in places that 14 girl only dreamed about but now travelling one of my passions in life is yet just a dream.

Sometimes I wonder if I could have pushed myself another year or two but I had been denying my decline for years now. For those who know about the spoon theory I was waking up with less and less spoons with each passing year.

By my 32nd birthday physically I felt like I did when I was a teenager. I had my strength back but I knew it was because I had stopped my daily abuse of pushing my body to the extreme. I spent hours wandering around my new neighborhood taking picture and painting but still didn’t feel like I had much direction or purpose. As fall approached I was in need of my 4th pacemaker changed the surgery went well but recovery was a slow one due to extent of having so many previous surgeries.

So needless to say I am looking forward to 2011 and trying to define my new dreams and really finding myself again. I did once before I am sure I can do it again. Here is to a wonderful and healthy 2011 everyone. I also want to thank everyone who reads this blog and share their stories here.
Teri (HRHS)

The Heart that continues to beat...

2010-12-08T20:11:00.002-05:00

As many of us get older we are more and more aware that many of us will eventually be faced with the idea of a heart transplant, or even a double organ surgery due to the pressure our shunt surgeries put on our other organs.

Well in UCLA Heart and Lung transplant center they principle lead of a new type of technology in that instead of transplanting a frozen non beating heart into a recipient they are now transferring a heart that never stopped beating.
This is good news for the 10% of heart patient who die each year waiting for a heart transplant. It not only opens the possibility of being able to get a heart from a large distance but also helps surgeon know whether the donor heart will be viable before it is too late to keep the patients old heart.

The typical heart transplant now involves putting a non beating heart on ice and having to wait for an hour for every hour the heart was on ice. A heart is only viable for transplant up to about 8 hours after it is removed from the donor. This new technology could mean that viability could go up to 24 hours.

The “organ care system” was first used in Germany back in 2006 and was developed in Andover Massachusetts USA by TransMedics Inc. The five hospital involved with the machine testing are the University of Pittsburgh Medical Center, Brigham and Women's Hospital in Boston, UCLA Medical Center in Los Angeles, the University of Chicago Hospitals' Cardiac Center and the Cleveland Clinic.

If you like to read more about this system the company site is http://www.transmedics.com/wt/page/organ_care
Teri (HRHS)

Mortality continues to decline

2010-12-03T18:35:00.002-05:00

The U.S. death rate from congenital heart defects dropped 24 percent from 1999 to 2006 among children and adults, according to research reported in Circulation: Journal of the American Heart Association. In a comparable study published in Circulation in 2001, deaths due to congenital heart defects dropped 39 percent from 1979 to 1997.

This new data released last week, is a bit hard to swallow after the passing of our friend Steve. It is an encouraging sign but of course it is hard to really say how encouraging considering that the most complex congenital heart disease patients that have survived to adulthood are entering their 30 and 40’s. So we are still in unknown territory in my opinion. As an adult with HRHS in my 30’s being in unknown territory has just been a fact of life.

Death is something that has shadow my life it consumed all the children I met as a kid growing up and it wasn’t until college that I met and became friends with my first CHD adults and I am sad to say they too have all passed. Steve passing this week has all brought us together and reminded us all fragile our lives can be. Sometimes you spend so much time trying to get through the next doctor visit the next procedure then next surgery you forget how much you need to spend time doing the things you love being with the ones you love.

The day Steve died I spent the day online and on the phone talking to our friends , most of us were still in shock even though we knew that Steve’s CHF was giving him problems. Like many of us adults with complex CHD we live with some form of CHF. So it took us by surprise that he had passed so suddenly. We each took time to reach out to each other remember Steve for the funny man he was the endless cheerleader who always believed we could do better. We laughed, we cried and some of us even yelled in anger that here we are again losing one of our own. It is hard to come to the realization that all that fighting as a kid to survive only to take us in our prime, our time to really be who we want to be to really make a life for ourselves.

I guess all we can do is wish that our future generations will not have to loose their warriors their hero’s in such a way. We carry on for Steve and the many more we have lost with the hope that one day we will all be able to walk together and leave no one behind.
Teri (HRHS)

Life is ever changing

2010-12-02T01:09:00.003-05:00

Some of you have emailed and asked why I walked away from this blog back in March. The truth is I didn’t really walk away; I had to take a break. I had come to a place in my life where I had just couldn’t work anymore, and the process of applying of Social Security Disability, buying my first home in a new town I barely knew much about. Then trying to make myself well again enough to feel like I was actually living not just going through the motions became a challenge that I needed to step back and focus on my life.

I planned to come back at the end of the summer but my never dying pacemaker decided to challenge me a bit which meant bed rest and a more then easy replacement surgery. After four pacemakers I have become a pro and once again feel like I have energy to live life to its fullest.

I do want to say that I was able to get social security disability and was approved on the first try. Which I am told is pretty much a miracle, and I have to say I did my homework and I will share with you all the tips I learned from how to prepare for such a task in a future post.

As most of us are still shocked and grieving the loss of our beloved Steve who could make the world of CHD one that was filled with humor and immense love. I have to say the day we heard of his death a lot of use adult with CHD spent hours talking to each other online and on the phone about Steve, about death itself and what living with CHD as an adult really means and I have to say I had some of my best most amazing conversations that day and I will share some of my thoughts in a future post which I think will surprise a lot of you.

Teri (HRHS)

Steve Catoe

2010-11-29T18:02:00.003-05:00

It is with a heavy heart to say goodbye to one of our best advocate and hero

Steve we had the same heart defect and you were one of my few cyanotic buddies. I will miss you! We lost a friend and a heart warrior but like you always told us we will carry on!

We will miss you Steve!

Teri(HRHS)

Oprah is not our answer .. Where our CHD Awareness should be spent

2010-03-10T20:29:00.002-05:00

The question of spreading awareness keeps on coming up in conversations I have with adults and parents. I have to say I don’t think we are exactly going about it the right way all the time. I think it depends on what kind or awareness you want to happen is the question we should first be asking ourselves. What do I mean by this? Well I think there is the awareness that will help in the aid of CHD diagnosis and treatment, and then there is awareness that just spread facts like CHD is the #1 birth defect or 1 and 125 or 100 (depending on what stats you follow) are born with a CHD.

Now I probably get in trouble again but I have to say this. I don’t think Oprah is our answer. I love the woman don’t get me wrong, and she certainly gets people talking but I can’t say that people with Autism are doing a lot better now that she had a show on them. I think she could help spread the facts about CHD but other than that I don’t think much else would come of it.

Where should we be trying to spread CHD Awareness? My answer is wherever you live. I think that we need to work on changing CHD awareness to start with local hospital and how they screen for CHD, making pleas to hospitals around where you live to ask them to hire CHD specialist adult and pediatric. See if you can talk at your local medical school about your experiences; try to inspire future doctors to go into this growing field. Then raise money in your own neighborhood amongst people who care, love, and know your family. Do what you are good at if it is baking then have a bake sale, if it running or walking or even biking then throw a neighborhood fundraiser. If you are good a crafts then have craft fair to raise money.

Raising money for you local hospital, or clinic that can then use the funds to implement the programs you are asking for. If we all start in our own neighborhoods and do our part then we can change the world of CHD a lot more then Oprah can. It is not an easy task, but if we educated the hospitals, medical students, doctors and our own communities to focus on CHD screening and treatment then we change the face of CHD in this country.

Then lastly it starts with our vote. If hospital don’t want to listen or aren’t able to treat your child then go to your local government and make it clear to them. Then only vote for people that will listen and be willing to help.

Most of you hopefully are aware that the Congenital Heart Futures Act is now part of the Federal Senate Health Care Bill that looked like it was going to pass and now looks like it might be ill fated to fail, but that act even a bit water down then the original bill that was proposed would still do wonders for CHD world. I think the only way we will change the face the CHD is to bring awareness and our support to people who can really change it including our own Federal Government.

As much as we want everyone to know what we have struggled through in our lives, either living with CHD or having a child with CHD it will really not matter to people who haven’t been in our shoes. Everyone has a story, a struggle, and a cause in their lives. Focusing on the people and the places where CHD change would count is in my opinion a better place to start our battles with.

Teri (HRHS)

A man, a bike, LA to NY in the name of CHD

2010-03-08T08:32:00.000-05:00

Who am I? I'm Nels Matson and I was born in 1982 with Partial Anomalous Pulmonary Venous Return and an ASD. I had open heart surgery a couple months before my third birthday. At 5 years old I received a clean bill of health and have had a very active life since.
About two years ago I decided to look a little deeper into the six inch scar on my chest. When I started the research I discovered the world of CHDs and that not everyone that was born with one of these defects was as fortunate as me. I had no idea the extent of the problem. I thought that I was just a rare kid walking around with a scar on my chest. Then I started thinking if I was born with a Congenital Heart Defect and I didn't know how deadly or common they were ... then the rest of the population was clueless!
So I started thinking of ways I could help kids with CHDs and encourage parents. I went to a Mended Little Hearts meeting. It was great, but I felt guilty because I couldn't identify with these little guys and I didn't have much to offer the parents. Sure, I had a scar on my chest, but I didn't remember the surgery and I never had to be faced with the thought of a second, third, fourth, or fifth surgery. Comparing me to these tough little guys was like being a boy scout and telling a marine that got back from Afghanistan I know what he's going through!
I decided instead to help the CHD world by spreading awareness of the problem and how common it is and to raise much needed money for research. This last year I tackled a 70.3 Ironman distance triathlon and a marathon to raise money for The Children's Heart Foundation. Those things weren't big enough, though. They didn't make people turn their heads enough. So this summer (June and July) I will be riding my bicycle from Los Angeles to New York City at a rate of around 100 miles a day. The money raised from the event will go to the Children's Heart Foundation (they fund the most promising CHD research). You can follow the event and go to the donation page from www.athletes4heart.blogspot.com.

What about your privacy?

2010-02-27T01:03:00.000-05:00

So I have been asked why I am not worried about my privacy. Since I started this discussion, I will be frank with this question that has been asked of me. Well one, live in Massachusetts where you are required to have health insurance for the past few years so I cannot be denied health insurance even if I cannot pay for it. Before that I knew I had to take the jobs that had the best health insurance, and didn’t require filling out a pre-existing form. This meant working for large companies’ usually large corporations have many health plans to choose from.

As for jobs well I never publically belong to sites for CHD when I was looking for a job. I started this blog when I was currently working. Of course with my disease I have had to face discrimination in the work place after they find out I have a half of a heart. I have had to take many weeks off for surgeries over the years, and because of it I lost out promotions because they didn’t think my health was reliable. I had verbal discrimination due to my condition by some of my managers , but at that time I knew I would not be working there that much longer so I decided to just leave, then push the issue since I was stressed enough .

Now I am in the long process of filing for Social Security Disability and I am getting free health insurance from Mass Health.

Teri (HRHS)

I am more then what is etched into my skin

2010-02-25T03:39:00.005-05:00

I know what I wrote yesterday is starting a lot of discussion, and some are outraged by what I say and some have the strongly agree,d and disagreed with me. It is ok I understand that this is just a part of life and we have a right to our opinions.

I have HRHS I stand in those shoes every day. I see my naked scared body in the mirror at least twice a day, and I can remember how I got some of them like it was yesterday. This is my life; this is what I will be till the day I die. I also know I am more then what is etched into my skin, and because of that I am able to stare back at myself with a sense of pride.

Pride is a funny word to me because I am proud not of the fact that I have scars, or even I survived the surgeries, or that I have Congenital Heart Disease, truth is that more about courage then pride. I am proud that I didn’t let being sick, stop me from going away to college, moving out on my own, living in a big city for 11 years after graduating and holding a full time job and still keeping up with my peers and traveling around the world and buying my first home at 31.

I am Proud that my mother told me every time I wanted to give up or didn’t think I could “that I am not my heart defect!” I asked my mother today what she thought of this whole idea of scars and hospital pictures and she said in so many words the moment you were born to the moment you will die you will always have this disease and you know that life is never easy but you will have to deal with your disease for the rest of your life, you live in that body I have no idea what it is to be you as much as I like to think I do ,and what you go through so I never really tried. I just wanted you to be more than a girl with a half of a heart. As a mother I am not here to define who you are, I raised you to become anything you wanted. I didn’t believe in highlighting your CHD would do you any good. We lived it every day , and I just hoped that your life would be more than your disease. When we look at pictures of you clothed or not we have emotions behind each picture but that is because we know you, we love you, and find pride in what you have done despite the hand your were dealt, but to a strangers you are another sick child with scars and I don’t want you to be that to anyone. We all have to overcome enormous things in life and I tried to spend my hours when you weren’t in a hospital making it everything but your disease, and because of it you did everything your doctors said you couldn’t. You did a lot better than a lot of your peers, that are a lot younger then you, I think because I wasn’t going to let your disease rule our lives. I think everyone should be careful what they put out on the web because a lot worse things than teasing can come from this.

I told her about the backlash I was expecting and she said that no mother wants to be told that what they do is wrong, but as someone who has lived what their child has lived it is up to you to say what you want, if that is something you choose. I have to say if all these moms are having blogs about their heart babies then they are doing just what you are saying you want. Kids don't want to be different then their peers and these moms dont want to be alone. They want to hear stories of people like you and your friends they want to seek hope and comfort in other mothers. They dont want to be alone or different! You wonder the price that will cost all I know is I raised you to find hope in only yourself!

When I was in college and obsessed with the internet, and I finally met people with CHD and started to blog, my mother told me only put out what you want everyone to know. The truth is now we are in the age of the internet we can pretty much find out anything we want on someone, and for people who are looking to hire an CHD adults being part of a public website can be way to discriminate because of a pre-existing condition. We with CHD have stories of discrimination whether it is a job or health insurance because we had heart surgery. In a job interview they cant ask you if you have a disease or a disability, but we know that companies do use Google and Facebook to look at potential hires. We also know that being an adult with pre-existing conditions limit us to what jobs we can take. My job search as an adult was more like who will give me the insurance I need let me have the surgeries I will need, who will give me the short-term disability I will need to continue to live and take care of my heart.

I know from what I wrote people are questioning who my parents were and I think that is the saddest part of it all. I am 31 years old these are my opinions are, the truth was I didn’t talk to my mother before I posted the post I did earlier.I don't think my mother has even read my blog to tell you the truth. I simple wanted to express what we the adults with CHD felt after voicing our concerns to each other and as you can see from the comment and reaction on Facebook. A lot of us have a hard time voicing our opinions, because we fear the backlash that is associated with it which is sad, especially because a lot of these parents are my age or not much older, yet I carry the scars that their children do and I feel like I needed to say something because they will God willing stand in my shoes one day!

Truth about growing up with scars

2010-02-24T01:31:00.000-05:00

A part of me wishes I was born now instead of back in 1978, for all we know now about CHD, the advancements that we have made in science and the ability to get information about CHD, but most of all the ability to grow up with children just like you. I however love the fact that I was born in 1978 because my life was as normal as it could be. My mother wasn’t filled with fears of germs, consumed with information on every disorder and complication that might come, and she never saw the need to take pictures of me in the hospital or my scars.
Lately, I and other adults with CHD have been having conversations about our concerns about children growing up with CHD and the need to spread awareness without compromising the ability for a child to grow up normally.
In the age where children spend more hours on the computer, Facebook, googling friend names, blogging, YouTube, and texting. I find it alarming that parents are posting pictures of their children showing off their scars. I know parents want their children to be proud of their scars, and to think they are amazing and show just how far they have come. The truth however is far from that. As a young child I would lift up my dress and show anyone who asked. I thought it was kind of cool to be different, but once I started to get closer to my teens and really understood what the scars meant, and the reality of my condition they became more like the scarlet letter tattooed across my chest. I didn’t live in the age where my classmate would look me up online and see my parent’s blog about me or even a support group webpage or even a YouTube video so my scars were hidden as long as I wanted them to be.
I couldn’t imagine how it would be going to school one day and seeing images of my 3 or 6 year old body exposed to my classmates. Children always want to fit in; they don’t want to be different because different isn’t normal. It takes maturity to be able to overcome the scars are really love your body for what it is and I have to say I am not ashamed of my scars but I struggled for years like most girl to have a good body image, and now even boys face that harsh reality of dealing with ideals. I know that healthy teens deal with body issues, and I know the parents that are exposing their children’s scars probably had the same issues as a teenager so I don’t understand why they are doing it to their children especially since it is ten times harder when you have scars all over your body.
It is hard for me to see pictures of these children because I have been there I know the reality of having to carry all that emotion all that pain. It is hard to live with a complex CHD, it is hard to accept all that comes with seeing what you had to go through every day on your body and feeling the physical and emotional pain associated with the scars.
Showing off your scars should be your choice. It should be something you decide to do and no I don’t think when I was 3 or even 8 I would understand what that really means. I think it is great that a lot more teens and adults are willing to show their scars, and I know that when CHD adult get together we even like to compare them but it’s our choice we understand what we are putting out there in the world. I know I would have been devastated if my mother or father had posted pictures of my on the internet, and kids at school brought them in to show everyone and I found out that it was my own parents who are causing this pain and embarrassment. I know I am not alone in this feeling. Everyone I have discussed this issue with has felt the same way so I caution parents to rethink this idea. I know you are proud of your children, how strong and brave they are but the truth is that we are the ones with the battle scars so to speak and it is a heavy thing to deal with when you really understand what is behind them. So us adults with CHD ask that you think really hard what you are really doing because we all know once an image is posted online it will be there forever, just like our scars.

Teri(HRHS)

In Memory

2010-02-12T23:28:00.002-05:00

Robert Kimani Mungai was born Nov 3 1975 and passed away on Feb 13th 2007. He was a man who seemed to always have so much life in him. He always had something he was planning, something to say, and a Kenyan story to go along with it.

We sometimes wonder why people come into our lives, I believe it is to teach of us of ourselves. We never know how much time we will have with them but it is not time that I take with me it is my memories and what I have learned from them that carries me. So today I celebrate the person I have become from knowing him and I still carry on the fight.

Kimani isn't alone though he is one of many who loose their battle with CHD every year. 4,000 children will die this year before their first birthday and countless adults with CHD will die mostly due to the lack of Adult Congenital Heart Disease doctors. Please help spread awareness.

Meet Jeni Part 2 (HLHS)

2010-02-02T19:19:00.004-05:00

First Name: Jeni
Age: 24
Your defect: Hypoplastic Left Heart Syndrome w/ pacemaker

When did you first become aware of your own mortality and how have you handled that? How has your family or your faith helped, or has it helped?

It’s been so long ago, I cannot recall exactly when I first became aware of my mortality. My mother always made sure that I understood exactly what was going on with my heart, so I’m sure part of her explanations was that it did have some risk. However, the first time when it permanently hit me would have to be with the death of my good friend from heart camp, Davianna Hogan. She was 15 when she passed away on January 6th 2001, and her death really hit me hard. At that point in my life I was reminded that not only my death could happen at any time, but anybody’s death. It made me understand that I cannot take the people in life for granted and that everyday that I have to live is a gift. This is especially true for those of us who were told that we would not live past a certain age. My parents were told that there was no guarantee of a long life after the surgeries I underwent, and now I’m 24. Now I make sure that I let all of my loved ones know how special they are to me, and that I try to never miss an opportunity to spend time with them and show my love for them. I think that it’s also made me much more of a mature person, since I’ve talked with middle-aged people who say they’ve only recently come to the same conclusion.

When did you realize you had a different life than other children, and how have you managed that into adulthood?

Again, I can’t recall a specific time when I had a different life than other children… A combination of my parents’ honesty and my classmates’ cruelty brought that conclusion early in my life. My parents—especially my mom—were great in that they never sugarcoated what was going on with my heart or my procedures/surgeries. Rather, they explained everything in a way that a child would understand, but also made sure that I knew exactly what the risks were. This made me realize in a gradual way that I was different from my classmates and friends.
Some of my classmates also made sure that I understood that I was different from them. One classmate in preschool kicked me in the stomach because he said it would be cool to see my scar break open and my insides spill out. Other students would push me down from behind on the playground because I could not run for very long. The worst incident happened in the first grade when I was in the restroom, washing my hands when an earthquake drill began. I was on my way out the door when two of my classmates told me that I should just let the building fall on me, since I was going to die anyway. It’s situations like that that helped me realize that I’m different, but with the help of family and friends, I was able to remind myself that it isn’t necessarily a negative thing to be different.
Now as an adult, I realize I can’t do a lot of things that normal adults can do—work, have children naturally, etc. Sometimes even everyday activities are a big challenge and I get tired easily. But, I’ve come to the conclusion that it doesn’t matter that I’m different in these ways, both to me and to the ones that care about me. I’ve learned to be grateful for the things I can do normally and I take advantage of that. I’m just different, and that’s perfectly OK with me.

Do you feel you can be honest with your parents about your fears and frustrations? What are the most important elements in having that trust?

I definitely feel that I can be honest with my parents. They have been my advocate my whole life for such things as; taking me to the hospital, asking doctors lots of important questions, reminding doctors that they know what’s best for my life(!), etc. Although they could never fully understand my feelings regarding my heart condition since they themselves had normal hearts, they did their best to relate to me as much possible. I can recall many days where I came home frustrated after other kids teased me or made fun of me, and my mom would sit their and just listen to me vent and cry.
I also feel like I wasn’t just raised by my parents. I also had my grandparents and my uncle to support me and help me. They were also there for me no matter what. After all that we’ve been through as a family, I feel that we have a much deeper connection because of it. Now though, that connection includes my husband. He’s been there for me ever since we were dating, and he would ask my parents questions about my heart and how to take care of me. He’s shown me time and time again that he only has my best interests at heart, and he goes out of his way to make sure that I’m comfortable with my heart problem.
I think the most important element of having this trust would have to be vulnerability. Having the courage to say that “I’m not OK,” whether you’re the patient or the parent makes a huge difference. Parents need to be strong, but it also helps the child to see that they care very much by being completely honest. There’s no sense in building walls around our hearts when we’re the closest family members we’ll ever have.

Meet Jeni Part 1 (HLHS) Personal View

2010-01-09T14:02:00.003-05:00

Name: Jeni
Age: 24
Your defect: Hypoplastic Left Heart Syndrome w/ pacemaker

What is something you always wanted to be asked about you disease that no one has asked or something you always wanted to say that you haven't had a chance to?
I guess it would have to be "What is the first thing that comes to mind when I wake up in the morning?" I think that this question is very important because it perceives what matters the most to me. I wonder about what God's will for me is and I want to fulfill His purpose for my life. I think about all the people I love and cherish. I think about all the heart families that I talk to and try to give hope to. I think about all my fellow CHDers of all ages that are getting up each day and fighting for another day of life. These are the things I live for. Now, I need to get out of bed and give it my all.

Give a short description how you perceive your life or felt about as corresponding with the following three words...

Past: Now that I look back to my past, I feel blessed. All of the challenging things I faced in my childhood have helped to mold me into the person I am today.

Present: I am overwhelmed with all the blessings I have in my life. I have God who is my rock and my strength to get through each day. I have a man who loves me unconditionally. I have a family and friends who never fail to be there for me. I never want to take a single moment for granted.

Future: My future is unknown...but isn't everyone's? Only God knows how long all of us are going to be here. I may have more open heart surgeries, or a heart transplant. All I know is if it's God's will for me, I will continue to beat the odds.

If you could give advice you wished someone told you when you were younger about growing up with CHD what would it be?
The advise I wish I heard when I was younger is "Watch your back." When I was growing up, no one knew the after affect of having numerous open heart surgeries at a young age. I had open heart surgery on my 1st day of life and consequently have had chronic back problems ever since. This is because when they opened me up during my surgery, they had to split my ribs before they even get to my heart to operate on. When they finished the surgery and closed my ribs up, they were unable to match them up evenly like they originally were. So now, it's like my ribs are continually tweaked on one side and I have constant back pain and head aches.

What is or are your greatest accomplishment(s) in life (so far)? Being married to the man I love with all my heart because as I was growing up all I wanted to be is a wife and a mother.

What has having CHD taught you?
I've learned to appreciate every breath God gives me. I have learned that no matter what I I want to do it for the glory of God. I've learned to not think of my heart condition as a problem, but as a blessing from God.

Briefly share your story of growing up with CHD:
It is next to impossible to briefly share my story growing up with CHD...but I will try. My family was always good at teaching me to never be ashamed of my scars and heart condition no matter what. Despite getting constantly teased and ridiculed by cruel children in school, I always knew that it was a problem they had...I wasn't the problem. My family also made an effort to always treat me as normal as possible. They always saw a uniqueness that shined from within me. They always encouraged me to persevere and never give up. It was hard in my earlier years because I always felt like I was the only child my age with a CHD. Back then there wasn't internet to communicate to others. I only knew of 2 or 3 others around my age with my HLHS until I went to Camp Del Corazon at the age of nine. Camp Del Corazon is a camp for children and teens with CHD or acquired heart disease. I find a certain bond in these people from Heart Camp that I do not have with anyone else, simply because we understand one another's rare life challenges. We all have scars on our chests, medications to take, doctor appointments to attend, and heart surgeries to go through. It was a huge turning point in my life. I can honestly say that going to Heart Camp has been one of the best things to ever happen to me.

How has having CHD changed your life (other then the obvious health issues)?
My heart condition is not just a part of me...it is who I am. I'm not sure what kind of person I would have become if God wasn't in my life. If He hadn't blessed me with all the love and support of all the people I am close to, I probably would not be here today. Each and every one of these cherished individuals has played a role that contributes to the formation of who I am; they all helped me have a positive outlook on my heart disease. However, the Being who by far made all the difference is my Lord and Savior. I always thought of my heart disease as a blessing from God despite what I went through, instead of feeling sorry for myself and being depressed. I know that I am blessed by God to have such a wonderful understanding of the beauty of life. This in turn, has given me the desire to live every single day as if it was my last.

New look and a New site

2010-01-01T17:18:00.002-05:00

New look and a new site, Inspiring hearts I hope will grow in 2010. I hope to bring not only new stories, but also talk about issue that faces living with CHD. The road is never easy as many of us know, and unfortunately CHD requires a lifetime of care. As most of us grow up into adulthood we face even bigger health issues, and I hope this will be a place to discuss issues that face us now, and issues that will be faced by future generations.

Teri (HRHS)

Time to stop working

2009-11-30T16:16:00.003-05:00

Tomorrow is my last day of work. While I have overwhelming mixed feeling about the idea I know I can no longer carry on the way I have been. I am glad I will have the ability to rest like I should but I also feel a sense of defeat. I know that I have done more then most and still being cyanotic to some it is regarded as a miracle.

The idea of going away to college and moving and living alone in a city hours away from family wasn’t something my doctors seemed to ever champion and at times I was ready to throw in the towel and admit defeat. How much can one put a body through to achieve ones goals in life? was once asked of me by a new cardiologist while I was admitted for heart surgery a few years back. I had a hard time responding because partly I didn’t know why I tortured myself, but all in all I think I did what I did so long for the experience of doing it. To me life is about trying new things, doing what you think is impossible, and achieving your goals no matter what you have to overcome. I know that by pushing myself I might have taken a few years off my life which I was told by a former cardiologist

I think of life a quality not quantity. I rather have spent the last 15 years pushing my body to experience all the living I have done all the amazing people I have met, the countries I have traveled to, the things I have learned then get a few extra years of sitting at home and resting. I believe I have survived this disease but it doesn’t give me a right to do nothing with it. I think if we are given such a gift we need to follow our dreams do what makes us happy. Life will never be easy but it can always be fulfilling if you make it.

So now, as I move into the next chapter of my life I still am dreaming and working towards new goals, ones that are less demanding on my body, but still rewarding.

Times are Changing

2009-11-18T22:37:00.001-05:00

Well the reasons why I haven’t been posting much lately is a few things. One I bought a condo and I am trying to organize my stuff and pack it Plus I need to prepare a few things at the condo like painting the orange and brown walls. Secondly, I was having severe cardiac symptoms that caused me to be in a lot of pain and usually had me passing out a few times of week. So my cardiologist put me on medical leave for a bit over a month. Good news is almost all the symptoms are gone and I am feeling better than I have in years. However, that means I had to make the ultimate decision to stop working for good so yesterday I returned to work to give my two week notice.
Will be continued later….

Meet Brooke (HLHS)

2009-10-12T06:00:00.002-04:00

Brooke
24 years old
Hypoplastic Left Heart Syndrome (HLHS)
What is something you always wanted to be asked about you disease that no one has asked or something you always wanted to say that you haven’t had a chance to? I would like to say that kids with CHD are normal. I think a lot of people feel like we needed to be treated differently or feel sympathy for us because of our medical history. What people don’t realize is that what we go through with our hearts may seem unusual or extraordinary to other people is completely normal for us. Parents of CHD kids need to remember this and treat their kids like they didn’t have a medical condition; they should have the same expectations and aspirations for them as their kids without CHD.

Give a short description how you perceive your life or felt about as corresponding with the following three words

Past: Growing up I was always a little different than kids my age; I was always more mature and had a hard time identifying with kids my age. I guess when you go through life-threatening events like heart surgery, even if you were young and don’t really remember it, it changes you; you learn not to take life for granted.

Present: Right now, my husband and I are living in Idaho while I’m finishing my graduate degree in Speech-language pathology. I’m itching to get out of school and start my “real life” but I feel incredibly lucky to be here, even if we’ve had to move far away from family and friends. The challenges have been well worth it.

Future: My husband and I are hoping to start our family in the next couple years. I was very excited to hear from my cardiologist that I could probably carry a child. I am looking forward to having a family and sharing these experiences with my friends and family.

If you could give advice you wished someone told you when you were younger about growing up with CHD what would it be? I would want to tell those children that you are special. Your experiences will shape you your whole life. Never be ashamed for what makes you different. You bring so much hope to people who come after you.

What is or are your greatest accomplishment(s) in life (so far)? I would say my two greatest accomplishments have been getting into graduate school and marrying the love of my life, Matthew.

What has having CHD taught you? Never take life for granted. Don’t sweat the small stuff.

Briefly share your story of growing up with CHD Growing up, my parents were honest with me about my condition and what it meant for my future. My mother taught me that nutrition is extremely important for someone like me. Also, my mom and I were involved in advocacy; talking to parents of babies with CHD and participating in heart walks. I did a commercial for the American Heart Association and was in one of their newsletters. Today, I still talk to parents of children with CHD and it’s amazing to see how much hope it brings to them to see an adult with CHD. I am also doing my master’s thesis on the language development and play skills of kids with a history of early corrective heart surgery (ECHS).

How has having CHD changed your life (other then the obvious health issues)? It has taught me to value every day of my life. I think a lot of people my age are unaware of their own mortality and tend to waste this time in their live or at least take it for granted. I consider CHD to be a great gift. I would not be myself without it.

Gift of life

2009-10-11T06:00:00.000-04:00

For many of us adults with CHD we have had the transplant conversation with the doctor. The decision to put yourself on the donor list is one that is probably the hardest you will make. I know personally I have been given the option a few times in my life. I would have to face a double transplant heart and lung. The survival longevity is not great for this kind of transplant, but so far I am able to live my life the way I want so I have not yet decided if I will want to have a transplant.
From an early age I alway believed it isn't the quantity of life, it is the quality. Then again, we all want more time, we want to be able to do what everyone else can. We want to grow old and grey and retire to a front porch somewhere. So weighing the idea of choosing such a gift is a battle of oneself.
I have known a few people with CHD that got hearts in their adult lives, some even can train to run marathons. The idea of never being able to run and all of sudden being able to run what most healthy adults don't dare to do is amazing and inspirational.
Choosing to live with a new heart is a gift beyond all gifts and leaves one to honor the donors life. That responsibility alone is one that bring on new challenges but the choice alone is one that I battle with every time the idea is brought up to me. Just another challenge CHD adults face.

Teri

Living a normal life when your life is anything but normal (Part 2)

2009-09-29T11:47:00.001-04:00

Sorry..I planned to post earlier but I have been swamped with trying to buy my first home, who knew all that was involved.

After my glenn procedure as a teenager, I was really lost and didn’t really know who I was. It didn’t helpthat I just turn 14, and had spent a month in a hospital, and two weeks later had to start my freshman year of highschool. Now what I am about to say might actually upset some people, but if I could have found the courage to say it back then to my family and friends I would have " just because I am home and no longer in the hospital, doesn’t mean I am ok and it certainly doesn’t mean life will go back to the way it was before." I deperately spent years trying to pretend that life was normal after tha,t and sometimes I cnovinced myself but I never was truly happy.

I can say I didn’t truly feel normal again till I was away in college living on my own terms, It was then that I felt that I could really be who I was and no one really knew who I was before that. No one to judge me that I once was able to climb that hill and now I can't and wants to know why. My parent pushed me to get a normal life which I am grateful for , but it was hard to know that as much as I accomplished I was never really going to be as normal as my friends. Now realize that I didn’t know any other CHD people. I guess it wasn’t till college I realized I didn’t have to fit in I just had to be myself and I think all teenagers go through that phase, CHD or not but for me it was a realization that no one can understand what it is like and people who really love me don't like to think about what it is like to be me. The only person who can really judge me, is me and once I learned that I could brush off what people say or what they think I am capable of. People who love you should always push you to be better but it is you that can only make it happen.

Teri

Living a normal life when your life is anything but normal

2009-09-09T19:02:00.002-04:00

Living a normal life when your life is anything but normal is not only a physical challenge but it is more of a mental challenge. I know growing up I was in a constant battle with myself, the one I showed to the world, and the person I really was inside. I know this sounds sad, I and I assure you it isn't something that I like to talk about, but as I talk to more and more adults with congenital heart disease, especially ones that never knew anyone like them we all have some degree of being two people.

I think I was aware of portraying a person I wasn't in grade school. I know most of my classmates knew I had a sickness, but of course they had no idea to what degree. I remember making up excuses for not doing certain things, like running around the playground saying silly things like; " I don’t want to get dirty" things like that. When the real reason was I couldn't run. The older I got the more I told the truth, I guess I lied when I was younger because I didn’t understand why I couldn’t run, or do things the other kids could do I just knew that I couldn't do it. However the truth sometimes hurts more then the lie, I remember many times being excused of using my "condition" as many people like to call it for my advantage.

I remember my freshman year of high school I just had my Glenn shunt done, and got out of the hospital less then two weeks before school started, I had spent 23 day in the hospital, and 16 days of that in the ICU. I looked at myself in the mirror, and didn’t physically or emotionally recognize myself. I was told by the doctors not to write on a chalk board for at least a month, due to the scar that went from my breast and curved all they way to my back and stopped between shoulder blades. So there I was sitting in class, just trying to be normal, and my teacher called on me to come to the board. Explaining to her that I just had major heart surgery, and couldn't write on a chalk board, was like trying to convince someone the sky was green. Even though all my teachers were told ahead of time what had just happened to me, she somehow thought I was making it up, maybe years of teaching high school students that dont really want to be there, slowly turns teachers to believe we are just giving then excuses not to do what they want us to. Truth was I didnt care about what I was doing, I had just fought a war against my own body and barely survived I was physically still there but who I was before left no trace.

With every teenager I think there is a part of not really knowing who you are, and doing what your friends do just to fit in. I was 14 but I had been through things ,and saw things that I shouldn't have had to face till I was old and grey. That is how I felt old and grey, but I managed to spend my freshman year trying to be upbeat, social, and interested in things I could careless about. I just wanted to go home sit in front of the TV, or disappear into my room, and just be left alone. I was tired, and I know I was deeply depressed only finding joy in what I could imagine or what I could write or draw. Art was my haven from reality, and my therapy to deal with all that had happened.
Teri (HRHS)
To be continued.....

The Uncertain Life...

2009-09-09T17:48:00.001-04:00

We all live our lives not knowing when it will end. I guess growing up knowing that everyday you live to see another day you were told you never get to see, is a blessing most of us with CHD don't take for granted. Of course we are only human, and we do get wrapped up in things that are unimportant, and waste time doing things we probably shouldn't, but like I said we are human.

There is a fine line I walk sometimes between being OK and not being well at all. I feel symptoms that would send a healthy person running to the ER , I however feel them everyday, even learned to control some of them, such as fainting I know when I am close to blacking out, but I am able to concentrate enough till I am somewhere safe. It doesn't always work, I have passed out in the snow in college once, but it was the only time in my life I did it in public. It is easy to accept symptoms that frighten others, even my friends and family, who really know me. I can brush them off, while they start having that panic look. I guess the truth is, I have never felt any other way. I know my body better then I think I know myself if that makes any sense.

I have to say I don't fear death, I know I have been closer to it then I care to remember, and I was born with the idea death was just around the corner. I know I don't welcome death but I do not fear it. What I do fear is not always knowing when a symptom I feel everyday will turn into something more. I know I can't be running to the hospital ever pain, or funny feeling I have. I also know that I can not ignore what is happening to me. I guess for me it is about listening to your gut, but it is a challenge that we with CHD deal with everyday.

Teri

Saying Goodbye to the Last Son.. Ted Kennedy

2009-08-28T20:00:00.003-04:00

I usually not one to talk about people I don't really know. I guess being from Massachusetts somewhat makes you know the Kennedy's they are hard to miss around here. There presence even if many died way before I was born still lingers on every street especially in Boston. Teddy as he is know around these parts treated everyone as if they were the most important person in the world. We all know Teddy had faults, and made some awful decisions in his life, and face immense sadness, but despite it, or even because of it perhaps he became one of the greatest politician this world has ever see.

We as American would not be living life as we know it without Teddy. Say what you will of his character, or choices he made through his life. His work lives through all of us. The laws he created and fought for we take for granted everyday. (Civil Rights Act of 1964, the Voting Rights Act of 1965, the 1990 Americans With Disabilities Act, the 1993 Family and Medical Leave Act and the Kennedy-Hatch law of 1997, minimum wage laws.) these are just a few of the legislation he was was vital force in getting passed.So, this weekend Massachusetts says goodbye to the last son and the US says goodbye to the man who shaped our lives even if we didn't agree with him we owe him allot for where we are now.

As a person who has to depend on health care to survive, I know because of him I can take time from work to have surgery and be able to go back without being discriminated against or loosing my job. Every disabled American, everyone on Medicaid and Medicare can thank Kennedy for all they have.

My Response to "He's Sick.Can I leave?"

2009-08-25T23:33:00.005-04:00

I recieved a few emails from loyal Inspiring Heart readers about the Boston Globe Advice column "He's Sick.Can I leave?" http://www.boston.com/lifestyle/relationships/blog/2009/08/hes_sick_can_i_leave.html
Most of you wanted to know what my response was since there is a big buzz about the the reaction of the advice columnist amoung chronically ill blogs and patients.

So this is my response to Meredith Goldstein

Your post " He’s Sick Can I leave" on August 5 has upset a lot of chronically ill people. It wasn’t the letter itself it was your response that greatly upsets me. When you said, "Dealing with a chronic is miserable. He needs to learn to cope without alienating everyone he loves. Go be 24." I am hoping that you left out a few words in that sentence because no one ever chooses to be chronically ill in the first place and I don’t believe because I am chronically ill makes the people around me miserable.

I am from Boston, I was born with the right side of my heart missing,. I was a child that wasn’t suppose to live and here I am 31 year later one of the first of my generation in my disease to survive to adulthood. With that however life is not easy I know the halls of Mass General Hospital better then my own home, I have spent a lifetime battling a defect and had to take on all the pain and burden living with a debilitating disease brings. Yet, I have managed to graduate college, work full time yet I have to do it no matter how I much pain I am or how tired I was that day. I try to be as happy as I can for everyday is a great gift.

I believe that young lady should follow her heart and do what she must. I don’t think anyone should stay with someone they are not in love with, or not truly happy. I of course see it from both sides I know that he is probably distance himself from the world because he feels he is not worthy the love, that he is just trying to survive and that is all he can manage at the time. He is just surviving. You insensitivity to the man in this story makes me sad especially when you say, "being the jerk is better then being the martyr". I think the last thing her boyfriend wants to do to his girlfriend is making her a martyr. He is desperately trying to keep his job, manage his pain while his whole life is collapsing in front of him.

What you call martyr, I call my hero’s. My friend, that stuck with me through the sleepless nights and danced me around the coffee table so I didn’t fall asleep when I was on dangerous medication, or the friend who sings silly love songs to me to make me feel better when he knows I am in pain but won’t admit it. The friend who falls asleep with me holding my hand, so I know that someone is there if I need them. Then of course there are the really bad days when all I can do is live on the bathroom floor just laying there and a friend just lays down next to me until I am strong enough. Those are my hero’s the ones who love me despite of my disease, who think I am a better person for it and they are better people for witnessing it. By the way all those moments happened in my early to mid 20’s. Youth doesn’t mean you have the right to be selfish, and heartless, "go be 24" well when I was 24 I had three heart related surgeries.

We will all have lives filled with up and downs but for every battle we grow stronger. I feel for the girl who is fighting for a life she once had, but please understand that he is fighting for his life. His life has changed and changed him and I am sure he is just trying to live. He is probably more desperate to have things the way they used to be, but he just can’t do it anymore. She has become much more then his girlfriend she has become his hero.
Teri

Tim's Story

2009-08-25T21:17:00.002-04:00

First Name Tim
Age 50
Your defect(s) TOF, Potts shunt 1959, Blalock shunt 1964, TOF repair 1969
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What is or are your greatest accomplishment(s) in life (so far)? Being married to the best woman on earth for the past 24 years.

What has having CHD taught you? Live life to the fullest.

Briefly share your story of growing up with CHD As a kid I was a mess. I couldn’t do any activity, and perceived myself as very different from the rest of the kids. I had great friends on the block I grew up on, they always found a way for me to be involved in what they were doing, I was known as the "all time twirler" for jump rope. School was harder. I only had a few friends, and couldn’t participate in anything. I spent a lot of time recovering from surgery and just being sick. Until the full repair. Then I started to make up for lost time, I felt great. I was in sports, scouts, camped, fished, and rode my bike just like the other kids.

How has having CHD changed your life (other then the obvious health issues)? It has allowed me to be empathic towards others that are different due to no fault of their own. I encourage others to really explore life to find their passions, you really can be anything you want to be.
When did you first become aware of your own mortality and how have you handled that? How has your family or your faith helped, or has it helped? I realized that my surgery in 1969 could be fatal; my parents seemed really nervous about it but never talked about it. I struggled with the thought of my own mortality for many years until I accepted Jesus into my life. I fear nothing now.

What future surgeries/inventions necessary beyond the Fontan surgery? I am currently being evaluated for a PVR and need a new hole that has developed in my heart repaired

Do you work? Are there some professions that are not realistic for you? I have led a full productive professional life. I have been a Respiratory Therapist, and involved in commercial construction for the last 25 years. Today I am a code official for a state agency.

What are your physical limitations? None, I have skied over 70 days in a year, climbed 14,000 foot peaks, snorkeled in Mexico and spend more time volunteering than sleeping!

How many hours of sleep is normal for you? 6-7

Name your 3 favorite items My powder skis, we live in a great neighborhood, I have the best scars at the gym.

What are your hobbies? Golf, dogs, reading.

Any fun facts about you or something you want to say? My friends kid is involved in fund raising for the heart assoc. each year by jumping rope for some length of time, he says that it is in honor of me so that other kids wont have to just be "twirlers" like Tim.

Meet Christi Part 2

2009-08-23T19:46:00.000-04:00

Name: Christi
Age: almost 30
Your defect(s): Tricuspid Atresia

Now it's during these teenaged years that I suppose everyone starts looking at their parents, doctors, family members, teachers etc. as humans rather than looming figures of authority and I must say I was surrounded by a pretty good group. My parents for their part balanced each other out. Dad has always been the more cautious one Mom has always been the best friend to everyone in my group in fact. My Mom is THE Mom to go to for advice even if it is a little on the risque side. And by risque let me get this straight, I was never discouraged by either of my parents to live life or go do all the dumb things teenagers did... I was just square and didn't. My group wasn't fast, we had our fun, our movie nights at friends houses or parties, our nights out at the beach etc... but we never got too wild. Stayed out past curfew, sure, did one or two of us try drinking and smoking, sure. Not me -- my first drink came after I was 21 and I have never even considered smoking. I did in a rebellous stance with my doctor get my ears pierced a second time, he thought I was insane not to pre-medicate etc. He was a worry-wort of the worst kind but it was almost comical and even he knew if I had wanted to do something more uniquely teenaged -- I would. As far as boys went I had all the typical drama and crushes, but being the nerdy "buddy" girl I didn't get much action as it were. I waited til my college years to really have good relationships. Most knew early on about my heart condition and some experienced the downsides of it too.

Now at almost 30, I am working in a school setting - where I love to be. I write a blog when I am inspired and have a loving relationship with an outstanding man. We just added a cat to our family and couldn't be happier. Things are a challenge now physically as doctors figure out some new issues but knowing my support system is out there makes all the difference. I scrapbook our memories and those of friends and family who are no longer in my life either because of distance, change or passing on. I am always behind the camera at events, always making sure everyone is enjoying their time. I try my best to keep in perspective that life is good. I always seek out ways to help others who are having a harder time than me, or who need a little extra TLC. Recently, I worked with a child who has a CHD nothing as major as my own, but seeing him wrestle around with the other kids has given me a great deal of hope. Watching his poise and maturity makes me think back to my own days at that stage and wonder if I looked the same to outside observers, just a kid with a lot on her shoulders. One who tried her best to balance being a kid and being a kid with a heart condition. As I often say to people, I forgot I never mentioned my heart to you, I just assumed you knew, it seems to me as if it is woven into the fiber of who I am. I am thankful for it at times, has made me strong in the face of challenges, compassionate to those who need it, creative in ways I am truly excited by every time I start a project. It would be impossible for me to picture my life without picturing everything that comes along with my "crazy heart."

Meet Christi Part 1

2009-08-20T20:37:00.002-04:00

Name: Christi
Age: almost 30
Your defect(s): Tricuspid Atresia

The best way to start this response is to say: I create, I teach, I laugh a lot. Those three things have been a constant since I was a child and certainly guided me through everything else to come. I was born the first grandchild, first niece, first child you name it; in my family I was a FIRST and I believe most of my family members were learning how to be around a child even more than one who was "different." In their own ways each of them had this bond with me that was unique... and it was wonderful, each taught me a song or a silly hobby or habit and these became the repertoire for the bedside entertainment I provided for nurses and doctors when I was 6 and having my surgery. From the earliest days of my childhood I can remember imagining the world and playing it out in my household, I lived in a universe of make-believe and crafts. The crafts part I have taken with me and can still be found scrap booking or creating "art projects" as friends like to say. Because these were my hobbies, whenever I felt sick or pained I could travel to a place in my mind where life was full of adventure, or I could make something to cheer myself up.
I think being a teenager or pre-teen was when the idea that I was different sunk in more, before then my friends in school had always treated me well and watched out for me. I held the role of the leader, mom, deep thinker in my small Catholic school class. I was certainly more adult than peers at a younger age and often gravitated to helping out teachers, secretaries and the like. Even in HS I volunteered to help out in the Nurse's Office when I was unable to go to gym. I think it was at this point in my life I realized I would either write or teach. Both seemed so ingrained into my being. I wrote to get out what bothered me, I helped people who might be in worse shape than myself to keep perspective. It's no wonder I now teach and write the occasional blog or poem. Although the times in these years proved to be awkward, both because I was going through puberty late and because I was starting to see my own limitations... I did come out of it with a tight group of friends who are phenomenal individuals.
They keep me moving and they have never treated me as less of a person, unique yes, quirky hell yes... but they all are too. My Mom affectionately calls us "The Toys from Misfit Island" naming me Hermie. These are the kinds of people who immediately clean up a mess when I am shaky and drop a glass, they were in charge of remembering my medication in HS. They have been there through palpitations, emotional meltdowns, family crises and more. My one friend a big guy with the most outwardly friendly personality often accompanied me to pediatric cardiology offices and when I would come out of my appointment I would find him leading a game for the kids waiting in the waiting room, or watching some kids movie which I would have to tear him away from. Other friends would search endlessly with me to find bathing suits that would cover my scar, so it wouldn't burn or find a dress for formals that wouldn't make all my veins stand out. They were my rock when I was having scary moments and being looked down on by peers. Many outside observers could not appreciate the extra help or extended time I sometimes received to finish projects or assignments. Had any of them followed me home, or visited like my core group did they would know I was pushing as hard as I could to be "normal". They were a source of comedy, sometimes finding new ways to cheer me up, reviewing the day I had missed in school through mock productions of HHS Live, or generally being their goofy selves... I still have laughs with them about all our shared memories good and bad

I am back...

2009-08-20T19:44:00.003-04:00

It has been awhile since I posted here. I am in pretty good health slowing down some lately but I am still going strong. I have received many emails,and I will try to respond to as many as I can as soon as I can. I had to take some time for myself, and really evaluate what I want, and what is best for me health wise, and life wise. I am glad to be back, and will be back to posting on a regular basis so keep the comments and the emails coming.

Teri (HRHS)

I am 31 today

2009-06-10T13:08:00.005-04:00

So today is my birthday! I made it 31 one years. Earlier this week I received an email from a mother who is expecting ( at 31 week) her first child and at 20 weeks was diagnosed with Hypoplastic Right Heart and Pulmonary atresia with intact ventricular septum . So she asked one question to me. How do you do it for all these years? I replied one day at a time and on the really bad days one hour at a time.

She said that her cardiologist said "I still cant predict the future of what
will happen to your child we certainly don't know what life will be in 30
years" then I found you.

We all know we are different and suffer different symptoms, some will make it some will not. I think the idea of knowing you are not alone, and there are others who have survived makes the day a bit better for us all.

Teri

31 here I come !

2009-06-03T09:40:00.007-04:00

Teri
Age 30
Boston Ma
I was born with Hypoplastic Right Heart, Pulmonary Artesia with Intact Ventricular Septum and moderate Tricuspid Artesia
II will be 31 next Wednesday, I am pretty sure I can make it another week. Back in 1978 the idea of living to 1 was just dream for my doctors and yet here I am at 31 and have out lived the whole surgical team and my first cardiologist. Yet my life is different then those who are born today. I will always be a "blue baby" my cyanosis will always be with me. My body has adjusted to that fact and with 31 years of experience it still shocks doctors in its ability, people always think my oximeter is broken not me!
Growing old in an uncertain period is more challenging, then growing up an impossible time. Mostly, because the specialist are few and far between and research is done on us. We are aging like out parents, but there aren't many to take care of our age and our condition so life continues to challenge as they say there is "no rest for the weary" but there is hope that future generation even generations 6 to 10 years prior to I have been able to do things beyond what my body is capable. The idea of being able to run for any distance, or climb up flights of stairs at a time, is but a dream I at last have decided will never come, but I see my fellow CHD friends doing these things. So I guess I don't always mind being the test subject because maybe someone will get to run if I do, or at least get to dream of doing it.

CHD life in a snow globe!

2009-05-29T13:26:00.004-04:00

Teri
Age 30
Boston Ma
I was born with Hypoplastic Right Heart, Pulmonary Artesia with Intact Ventricular Septum and moderate Tricuspid Artesia.
After every surgery I feel a bit lost, like a snow globe that was just shaken and the chaos of all the white snow is covering up the scene inside. I guess that is how I feel, this winter I hibernated, made myself an igloo and now I am out ready to face the snow. I need to take time to really figure out what my scene looks like now.
Even after all the battles I have faced, I still get lost in the act of trying to save my life I somehow loose who I was before it. Long after the battle wound have healed I am still faced with the idea I made it through another surgery and now I will never be the same. Just like one more scar to add to my body it is one more piece of me I need to find because who I was before is no longer there.
Victory is always sweet but it too has a price to pay. No one said living with CHD would get easier, I think it just get harder but life's simplicities seem even more rewarding with each passing day.

Meet Lauren

2009-05-18T21:49:00.002-04:00

Lauren
Age: 21
Defect: Tricuspid Atresia aka HRHS (Have had two open-heart surgeries; Pulmonary Artery Banding at 4 months and Fontan at 2yrs. old)

What is or are your greatest accomplishment(s) in life (so far)?
I would have to say that my greatest accomplishments in life so far are:
1.) Going to College, I'm in my third year and a Psychology major.
2.) Getting involved in the CHD community. I'm part of a few CHD organizations and have spoken before, I also reach out to CHD families through carepages. I love doing these things on my spare time.
3.) Being the best daughter, sister, granddaughter, godmother, friend, girlfriend, etc. that I can be.
4.) Spending time with my family and never taking them for granted.

What has having CHD taught you?
- My CHD has taught me so much. First and for most it has taught me never to take life for granted. I cherish my family even when they annoy me and I love spending time when them, when I have the time. My CHD has taught me and showed me about true friends and who will be there through thick and thin. I have learned to be grateful for everything I've being given and I wake up every morning happy just to be alive. My CHD has taught me to be more understanding towards people, more loving, more caring, more giving. I have learned to forgive even when some people think I shouldn't because the other person doesn't deserve forgiveness. Lastly, it has taught me to put the people I love first, which is not always a good thing and I understand that my health does come first, but despite any pain I may have I hate seeing the people I love and care about in pain.

Briefly share your story of growing up with CHD.
- Growing up for me was tough, no doubt about that. I had trouble making friends and keeping them. I was very shy and socially didn't know how to relate to kids my age because of this I went to Kindergarten twice (once at a public school and once at a private school and private school is where I stayed until college). I also got teased by other kids in gym class or on the playground which was hard. I learned how to fend for myself and I also learned about true friends. If I made a friend and they stayed with my through anything, even health issues, I knew that they were a keeper. Despite a difficult time in school socially I was a smart kid and had a wonderful home life. I have two amazing parents and two wonderful brothers and an extended family who are very supportive. As I got to high school the teasing stopped and I made a few close friends who I still talk to today. Since I've been in college, my social life is like any normal college kid minus the partying, alcohol, and drugs. I had a pretty happy childhood despite hardships at school.

When did you first become aware of your own mortality and how have you handled that? How has your family or your faith helped, or has it helped?
- You know I'm not totally sure on when I became aware of it, if I had to guess I'd say about 8 years old. When I was young it was pretty easy to handle as my parents made me feel like everything was going to be ok and I felt safe even though sometimes I would break down and cry (which was was rarely). As I've gotten older and have had some minor heart issues it has hit me like a ton of bricks. It has been very hard on me and I worry a lot. I have high anxiety and minor depression and family issues too, so that doesn't help. My parents, my friends, and my boyfriend are supportive and try to keep my mind occupied. I try to keep my mind occupied and think about the positives as best I can. I hold on to my faith, so yes faith has helped. I pray to God and I trust in him and his plans for me with my whole heart and doing this and knowing I have faith in him make it easier on me. I usually take things day by day and I'm always grateful for the here and now. I DO plan on a long life and a bright future, I think about it, but some days it is just easier to just stay in the now.

When/what do you tell a boyfriend/girlfriend about your condition?
I actually didn't tell my boyfriend about my condition my dad did! My dad set me and my boyfriend up (I know funny right, my dad has good taste because I love this man so much, Thanks Dad! =D). Before we started dating he asked about it and I explained everything he wanted to know about it, I don't keep anything from him at all. He still asks questions about heart issues sometimes and I'm totally honest with him, sometimes brutally honest and it scares him sometimes. He hates to see me in pain and tries to do anything he can to help me out. He is awesome!!! I couldn't have asked for a better boyfriend. I was nervous about telling him everything about my heart along with my scars (as I was with previous boyfriends, who didn't take the whole heart issue too seriously, which bothered me because my heart issues are serious!). My wonderful boyfriend doesn't care about my scars, he loves them actually and he doesn't look at me differently because I have a heart condition (even though he does worry about me, he just doesn't always show it). I say having a heart condition has been a good detector of who will stick around and be with me for life and who won't.

What future surgeries/inventions necessary beyond the Fontan surgery?
I couldn't tell you. Right now I'm in very good health for my age, condition, and surgeries I've had. The future does scare me sometimes, but I try to just look to the positive. If something does happen and if need further intervention I would deal with it then. I'm open and will do anything that will keep me healthy enough to live a full live. I want to live until I say I'm ready to go haha. :)

Do you have a pacemaker or develop rhythm issues? When did this occur?
I do not have a pacemaker, but I do have rhythm issues. These rhythm issues started when I was 17years old. I started having chest pain, nigh sweat, off heart beats, racing of the heart, and it was hard to breath. I was diagnosed with Super ventricular Tachycardia or simply a form of heart palpitations. I have been on beta-blockers for almost 4 years and they have helped a great deal. I have been getting some break through palpitations the past two years and have discussed upping my beta-blocker amount with my cardiologist, but I didn't want to, so I will be talking about other options or a different beta-blocker as I don't really like the one I'm on right now (it's called Atenolol for inquiring minds).

What are your physical limitations?
Well, I can't play contact sports, but was never interested in that anyways. I had trouble keeping up in gym class and on the playground when I was a kid. I just listened to my body and stopped when I needed to. I do the same thing to thing to this day, even in college. If I get tired I sit even if I'm late to class. I get tired really easily and the medication I'm on make me tired too. I take things as easy as possible and in everything I do activity wise. I stop when I start getting tired or out of breath, I try not to push myself, I don't want to risk my health.

How many hours of sleep is normal for you?
I get between 6-8 hours on an average night. I should be getting about 8 every night, but with school that is not always possible. College is tough and I have morning classes. When I get home I don't always have time for a nap and when I do nap it's harder for me to fall asleep at night. I'm trying to be better about going to bed earlier to get the sleep I need as when I get more sleep I have more energy and I know in the long run it will help my heart a great deal.

What are your hobbies?
I enjoy reading, writing, bowling (I have been bowling since I was about 3 or 4 yrs. old and was on the varsity girl's bowling team for three years in high school which earned me my varsity jacket.), hanging out with my friends, spending time with my family, spending time with my boyfriend, watching TV, watching movies, and listening to music.

Favorite TV shows, movies, music, books, etc.
I usually don't watch a whole lot of TV, but a few of my favorite shows are: John and Kate plus 8, Adoption Stories (on Discovery Health), Family Guy (yea not for little kids at all), Reaper (great show). Some of my favorite movies include: The Notebook, White Chicks, Rush Hour 1, 2, & 3, Back to the Future 1, 2, & 3, Indiana Jones 1-4, and Triple XXX just to name a few. As for music, I listen to a wide variety ranging from Christian pop to 80's music to some of the popular alternative music; I do hate sreamo and rap music and most country. Lastly book, I love books and wish I had more time to read them; a few of my many favorite books include: The Glass Castle, The Memory Keeper's Daughter, The Secret Life of Bees (yes I saw the movie and it was pretty good), A Family of Her Own, A Kiss to Remember, A Walk to Remember, and I'm currently trying to read (when I have free time) A Conversation with God: book 1, A Uncommon Dialogue

Any fun facts about you or something you want to say
A fun fact about me is I like to wear crazy and fun looking knee socks all through the winter. :) I love to write poems on my free time, I've been writing them for about 10years and I love quotes! A random fact is one of my closet college friends has a CHD called Pulmonary Atresia, is doing well and also had two open-heart surgeries (she is someone who "gets" how I feel most of the time).

Following your dreams

2009-04-11T16:18:00.002-04:00

Teri
Age 30
Boston Ma
I was born with Hypoplastic Right Heart, Pulmonary Artesia with Intact Ventricular Septum and moderate Tricuspid Artesia.

177
Originally uploaded by Vieiragirl

I have been a bit absent. I have a good excuse however. I went to Paris. Unfortunately my last day of vacation I was not feeling well and now I am on bed rest for the next two days due to the fact I have walking pneumonia. I am starting to feel better though.

Ok back to the purpose of this post. Living with congenital heart disease we all know has limitations on what we can do in life. Which is why I think having goals, dreams and a wish list is an important thing to have. I have been making them since I was young. So of the things I wished for as a child I don’t want anymore but that is how life goes, we grow and we change and what we want or even dream changes.

I love to travel, if I had a million dollars I know what I would do with it. I would take out my places to see list and live it.

I can’t change the fact that I have a heart condition and everyone around me like to remind me that I have been living life on borrowed time so to speak, but I can choose how I will live it. I spent a large portion of my life in the hospital or trying to be “normal”. Live a normal life that was somewhat expected of me, but once I reached my middle 20’s I realized that I need to live, and do what made my life easier, happier, and made me feel like if this life ended tomorrow, I at least lived it the way I wanted to. So since then I have taken out my list, and created new ones and tried to make them come true. Paris was on the top of my list and now I can move on to another one. I know the key to living life, is to love it and love yourself in it. It took me about 30 years to stop trying to live up to expectation of other and live for myself but standing under the Eiffel tower and walking through the Parisian flower markets I really felt alive and those moment are one to cherish. So I encourage everyone heart disease or not to live their dreams.

Funky Heart host a CHD blog carnival

2009-03-24T22:35:00.002-04:00

Please take time to check out some other amazing CHD bloggers. Thank you Steve for hosting this. It was a great idea!

http://tricuspid.wordpress.com/2009/03/24/blog-carnival-the-gifts-and-challenges-of-a-congenital-heart-defect/

We must be heard.

2009-03-23T12:37:00.002-04:00

I was reading http://tricuspid.wordpress.com/. Steve had noticed a website noting that our Congenital Heart Futures Act according to them was a waste or how they put it "most egregious"
Here is the article
http://libertymaven.com/2009/03/20/how-is-congress-spending-its-time-%e2%80%94-and-your-money-part-11/4855/
So here is my response
It is interesting your twitter account description has the words "anything to increase pleasure and decrease pain with the word Freedom” considering you put Congenital heart future act bills as a waste. I have lived 30 years of my life battling everyday for survival, and I can assure you I have never had a day without pain. So for a site to stand for relieving pain, and trying to find what is right in the world you dont seem to stand up for the ones you should be supporting. So as someone who has spent 30 years being told that she will not live and the future is uncertain because the funding for education, medicine, and research is not there. I ask you how you can deny my freedom, or the freedom of the 1 out every 120 babies born in the country. Where is our hope? why is our lives less than yours? What do you say to the 4,000 babies that died this year before their first birthday? What do you say if this was your child, your sister or brother? I cannot stop my endless heart surgeries or even the physical pain that having half of a heart grants me every day. But I will be certain that I will no longer stand by and let people call my life a waste, or the lives of 1 million adults in the country alone that lives against all odds. We are not asking Congress or the Senate to give us the world we are just asking them to recognize the #1 birth defect, the #1 killer of children and one of the least funded diseases. We know how to fight for our lives we just ask for our government to let us be heard so we don’t have to bury more of our friend unnecessarily. We just want to live knowing that someday it will be better for future generations.

Hope will always be here!

2009-03-16T13:03:00.002-04:00

I have neglected this blog a bit in recent weeks, I had some hard thinking to do about what I want from my life. I am about to travel to Paris next week, and I feel like it will be a start of a new chapter in my life, and I had to take some time to figure out what I needed for myself. I thank everyone who read this blog constantly as inspiration and my heart hurts for those parents I have gotten to know that lost their child, or are somewhere in a hospital now battling for their lives.
I hope to continue to tell mine, and other stories on this blog, and grow this blog in coming months. I just wanted to let everyone who reads this blog that you are not alone, and I am here if anyone needs to talk or has questions.

Gretchen Part 3 Friends, Relationships, and Work Life.

2009-02-25T21:43:00.003-05:00

Gretchen
Age 27
New York City, NY
HRHS and Coarctation of the Aorta

How much did your friends know about your heart? Did they watch out for you?
When I was about four, I was playing with a neighborhood girl and she asked about my scar. I actually told her that my mom was calling me and ran inside because I didn’t know what to say. I told my mom and she worked with me on practicing an age-appropriate response (something like, “I had surgery for my heart” or something, and she told me it was okay to say, “I don’t know” if people asked questions I didn’t know how to answer.) After that, until about 6th grade, my friends knew that I had had heart surgery, but that’s about it. It was such a huge part of my life and identity that it was important for people to know about it a little bit. However, I had no physical limitations and I really didn’t need any watching out for. It would have been annoying to have my friends telling me to be careful or asking if I was okay because of my heart. In fact, as an adult it is annoying when my friends tell me to be careful or ask if I am okay because of my heart.
I had surgery again when I was in 6th grade. My parents asked me if I wanted my classmates or any of my friends to know ahead of time. They also asked if it was okay for them to tell my teacher. I agreed that I wanted my teacher to know and I wanted my best friend to know (but I didn’t want to tell them myself!) Even after they knew, I didn’t talk about it much at all during school, even with my best friend. I asked my mom to tell my teacher to tell the class why I was absent on the day of my surgery. She did and the whole class wrote me get well cards and made me a really nice quilt (each kid decorated one square). My recovery included almost a month in the hospital because of complications, so when I was feeling better, we arranged to use a conference room in the hospital to have a party for the whole class. It was really great to be able to help plan the party and see my friends and classmates. It was also kind of freaky (probably for them too) because I had lost a lot of weight. I remember looking at the girls’ thighs and thinking, “Wow, their thighs are so huge and healthy. I must look like a toothpick right now.”
Since then, I have been in control of how much my friends know about my heart. My parents have always been good at making sure I knew what was going on and how to explain everything.

How open were your parents or doctors with you about teenage things...like experimenting with drugs, drinking, smoking, etc.
My mom has always been great about talking with me about “teenage things” (including sex and pregnancy) but my doctor really just refused to discuss any of it with me beyond, “Don’t do it.” The summer before I went off to college, my mother asked my doctor to tell me what I should be aware of in terms of how alcohol or drugs could interact with my medications or condition. All he would say was, “Well, you’re not doing illegal drugs and aren’t you only 18? You can’t even drink until you’re 21.” Not real helpful. However, he (otherwise a fabulous doctor) has retired and hopefully the new generation of doctors can be a bit more practical. Anyway, this is one reason it is really important to transition kids into Adult Congenital Heart clinics when they reach age 17 or 18.

As you got older did you have more difficulties in school, like keeping up with your friends, or focusing with studies etc.
No. My only problem in school was having to run the mile in PE class. I always did it anyway, and I always hated it.

Do you work? Are there some professions that are not realistic for you?
Professional football is right out for me. Ditto bodybuilding, stunt plane piloting, becoming an astronaut, and anything that involves scuba diving. That still leaves a LOT of options. I currently work full time as a third grade special education teacher.

Do you get SSI instead of working?
No, I have a full time job.

What is the hardest part about having CHD?
Deciding not to risk pregnancy has been the hardest part. Well, deciding was easy; accepting that decision was hard.

Does having CHD affect your personal relationships in a negative way?
No.

When/what do you tell a boyfriend/girlfriend about your condition?
Most of my love interests have known me first as a friend, so they already knew at least a little about my CHD. I don’t hide anything, so everyone who knows me has seen the top of my open heart surgery scar. After that, I have always just played it by ear, basing how much I tell and when on my comfort level and the other person’s interest level.

What do you do about birth control or do you want to have children?
Until recently, my favorite method of birth control has been careful avoidance of the particular act that might lead to pregnancy. There are lots of other ways to have mutually enjoyable and fulfilling sex, and exploring them has increased my sexual creativity, as well as my partners’.
However, you’re probably wondering what else I have done to prevent pregnancy, when not avoiding that particular act. At first, I used condoms and spermicide, but that was stressful and frustrating. Then, I switched from my pediatric cardiologist to a cardiologist who specifically deals with Adults with CHD. With my cardiologist’s permission I got a prescription for an oral contraceptive (I don’t remember which one at this point). That was okay, but it had the unfortunate effect of gradually lessening my libido to the point where birth control wasn’t necessary. A few years ago, I used a Mirena IUD. That was great for a little while, but then I determined that it was seriously affecting my moods and causing me anxiety. Then, a little later, I started experiencing continuous spotting in addition to the emotional effects. I had the IUD taken out about a year and three months after I first got it. I have very much enjoyed the return of my emotional stability since then. I would not really recommend any of these methods to other people. Now, I am in a monogamous life partnership and about a year ago we did some decision-making together. We carefully considered our options, including a risky pregnancy for me or a surrogate pregnancy using DNA from both of us or DNA from him and a donor. We decided against making any babies ourselves, and he decided against the possibility of making babies with anyone else in the future. He had a vasectomy and we are now worry-free in that department. I absolutely would recommend this form of birth control, but it was completely his decision (as it needed to be). I really really appreciate it, though, and I appreciate him for getting snipped.

In Memory

2009-02-13T06:51:00.002-05:00

Today in honor of CHD awareness week I am reminded that our lives are a constant fight for survival. Two years ago today the man in this picture passed away a few weeks after having a valve replacement.

You might recall him from my story "One day I went with a friend to a party at a neighboring college and I was sitting talking to a guy I had met briefly at a bus stop the previous semester and we were talking about college stuff and he leaned in and whispered in my ear “ I know your secret” . He then grabbed my hand and said your nails are blue. He then lifted his shirt and there was a zipper scar down his chest. He was 6’3 man from Kenya and I was 5'2 from MA but we had the same story."

Robert Kimani Mungai was born Nov 3 1975 and passed away on Feb 13th 2007. He was a man who seemed to always have so much life in him. He always had something he was planning, something to say, and a Kenyan story to go along with it.

We sometimes wonder why people come into our lives, I believe it is to teach of us of ourselves. We never know how much time we will have with them but it is not time that I take with me it is my memories and what I have learned from them that carries me. So today I celebrate the person I have become from knowing him and I still carry on the fight.

My Love List For My Heart (Disease)

2009-02-11T11:17:00.003-05:00

It might seem silly to most but those of us that have congenital heart disease are thankful for what it has given us. Don't get me wrong we have our "Why me" moments. Without Congenital Heart Disease I wouldn't be who I am. I always cringe a bit when people say they are not their disease, I know just by living with a disease it will change everything in your life. From how you see the world, how you act in the world and how you treat others.
Congenital Heart Disease Love List- because I owe it my life.
1. I have the best stories to tell.
2. Because I could never run, play sports, I found my passion for art and writing.
3. I have badges (scars) that prove where I have been and how far I have come but they do not define me
4. Defying the odds is as easy as getting out of bed everyday
5. Life's achievements are that much sweeter when many thought it was not possible
6. Learning at an early age that life isn't about being the best it is about being yourself
7. Loving someone is easier when you have nothing to loose, worst you can end up with is a broken heart and I already have one of those and I am doing just fine.
8. I am such a good sleeper, I think I could win a contest if there was one.
9. My life is just dreams fulfilled
10. Finding what is important to me in life and working every day to fulfill as many as I can.

Meet Jessica Part 1

2009-02-10T23:29:00.002-05:00

Jessica
Age 24
Single Ventricle, transposition of the great arteries, pulmonary artery banding

What is something you always wanted to be asked about you disease that no one has asked or something you always wanted to say that you haven't had a chance to?
When people hear about my heart problems they assume that everything I choose not to do is associated with it, (i.e. drinking) or that EVERYTHING in their child’s life will be affected. It won't. I've heard people argue about whether or not a kid should be allowed in public school. The more sheltered and 'babied' a child with this disease is the worse off I believe they will be.

Give a short description how you perceive your life or felt about as corresponding with the following three words
Past - My life in general was fairly normal as far as my condition, however I think I was a bit paranoid due to the lack of information.
Present - Wonderful. Minimally affected. There is so much new information and there is so much hope!!!
Future - Bright! I hope to forge ahead, grow old and gray and look back on it as in inconvience and not something that defined me or stopped me

If you could give advice you wished someone told you when you were younger about growing up with CHD what would it be?
Live life normally. Everyone dies of something. There are no promises to us, or to anyone else.

What is or are your greatest accomplishment(s) in life (so far)?
Finishing my training as a paramedic and making myself useful and valuable. The job is not an easy one for anyone, and to have done it well and without compromise is amazing to me.

What has having CHD taught you?
Don't let someone decide your life for you. You have to fight for yourself, push yourself, and question everything. You have to surround yourself with people who will help you become what you want to be, don't settle for those who will simply be pleased with your survival. Search for those who want to help you LIVE

Briefly share your story of growing up with CHD
I was blessed to have a doctor who, when asked if I would die of this, told my mother 'How the hell should I know?' His message was that just because I have this does not mean it will kill me. Tomorrow is promised to no one, no matter how healthy. When I was a kid I felt normal, but as I grew up things changed. People viewed me as different or fragile. Intimate relationships worried me because of my physical scars and I worried that I wouldn't find someone who would be willing to deal with whatever came down the pipeline. That hasn't been an issue. I grew up a bit paranoid and then as I started in medicine I realized just how much else could kill me and worried more about that!

How has having CHD changed your life (other than the obvious health issues)?
There are almost no health issues. I think it's changed my life by making me stronger. I feel I can do anything, face anything, and overcome whatever. I feel very blessed and my spirituality is strong. I think it puts things in prospective when you are so young and face your own mortality.

CHD Awareness week

2009-02-09T10:06:00.002-05:00

This week I will try to post allot. I am still waiting for more adult survivors to submit their stories and I am hoping that this week will inspire them to do so. I was just wondering what everyone is doing to spread the word this week. I have another blog that I post daily on called Finding Inspiration where every day I am posting CHD facts and the need for awareness. If you care to check it out. http://vieiragirl.blogspot.com. Please let me know what you are doing to spread awareness?

Jan (Part 2) Limitations and what I have learned

2009-02-04T21:20:00.002-05:00

Jan
40
Atrial Spetal Defect, Patent Ductus Arteriosis, Tricuspid Atresia, Ventrical Spetal Defect

Before you learn to walk you learn to crawl, before you learn to crawl you learn to roll over . Before you learn to fly you learn how to stay grounded.
In this life there will alway's be naysayers. People you deem themselves someone worthy to tell you just what you can and can not do. I have had these people in my life since the day I was diagnosed with my CHD's. Doctors who would not let me do anything because they didn't know any better. Parent's who loved me and did what the doctors said because they, too, did not know any better and did not have the resources and knowledge there is today.
Growing up I was very limited in the thing's I was **Allowed by the doctors** to do. No running, no skating, no bike, no swimming, no sleep away camp... nothing like that becuase they thought all that physical activity would be dangerous for me. Remembering this is over 30 yrs ago and they had very limited knowledge of my heart, of how activity could help to strengthen the heart muscles and therefore do me more good than harm etc. They had my parents so afraid of me falling and getting an infection or catching a childhood disease. That when I was 21 and got the Chicken Pox my Mother had a major meltdown. Why? She had been told if I got a childhood disease I would have to be in the hospital and it would probably kill me. I cant imagine going through life hearing something like that about your own child and then having to face it happen. or well, not really happen. Yes I was miserable with the Pox but I never had to go to the hospital and I am not dead from them.
Growing up I learned my own set of limitations. I also learned that what my childhood limitations were were not necessarily the same as they were as I was getting older. I did alot I was not *supposed * to do. I challenged alot of the misconceptions. I did the thing's my parents were told I would *Never under any circumstances * do. I went out with friends, I learned to drive, I got a job, I graduated from High School... Because the limitations inposed on me over 20 yrs ago (at that point) were so outdated and not even close to rational that I had no choice but to prove them wrong.
I also learned what **my** limiations are. My being the ones I set for myself... I know that I can strap on a pair of Ice Skates and fall flat on my butt in Rockerfeller Center, cause I have no sense of balance. I know if I get into one of those blow up bouncy things it will make me really sick, I know that if I fall and scapre my knee my life will not end in infection and death, I know that I can rent an ATV on Dayton Beach and drive (or attempt o drive) the beach. I know I can do anything I set my mind to or I can try to anyhow.
So the naysayers of this world can just go jump off a bridge. Let them say what they will for they not nothing of what we can do.

Gretchen (Part 2) Dealing with CHD as an Adult

2009-01-26T23:03:00.004-05:00

Gretchen
Age 27
New York City, NY
HRHS and Coarctation of the Aorta
At what point did you want to go to the doctor by yourself and not have your parents with you?

I never want to go to the doctor by myself. Even now my partner comes with me to my appointments. I think it is really important to have another person along for support, whether to take notes, ask the doctors hard questions (my dad is Great at this), or just be there to hold my hand in the waiting room.
That said, my mother started stepping out and letting me talk to the doctor one-on-one at some point during my teen years, and later, in my early twenties, I did go to a couple of routine appointments by myself.
My general philosophy on this is that parents should help facilitate their child’s transition to taking responsibility for their own care during their teen years. This means transferring over some of the responsibilities—like calling to make appointments, calling the pharmacy to refill prescriptions, etc—without withdrawing any support. Your child might not want to take over these responsibilities (I know I didn’t), but I really think it’s important that they do while they have you there to help them out. When your kid is old enough to hang out with friends at the mall, or be freshman class president, or take on other types of responsibilities, she is old enough to call the doctor’s office. At first, she might want you to rehearse what she is supposed to say (“Hello, I’m calling to make an appointment with Dr. Xyz…”, “I’m calling because I have a prescription on file and I need a refill. My name is … The medication is called …”) and stand right next to her while she calls. It’s important that this happens before your child goes off to college or moves out on their own. Even if they’re staying close to home or living at home, people should know how to manage their own care by the time they are legally adults. That way, when it really is their full responsibility to take care of their health, they will already have some practice at it.

What future surgeries/inventions necessary beyond the Fontan surgery?

I sure am hoping to benefit from some future inventions! Inventing a way for my body to grow itself a perfect heart would be the coolest.
So far, I have had two Fontan revisions and I currently take six prescription medications, including an anticoagulant, an ACE inhibitor, a beta-blocker, and diuretics. There were so few people who survived before me, that I have never known what to expect. And now, what they are doing with the infants and children is so different from what they did 25 years ago, that I’m sure it’s hard for parents of young kids to predict very accurately based on our experiences.

Do you have a pacemaker or develop rhythm issues? When did this occur?

No pacemaker. In September of 9th grade, I experienced weird heart rhythm and went to the emergency room. Since my heart was not beating wildly fast, the doctors were not hugely concerned. They did get me a holter monitor to wear for a couple of days. When the results were analyzed, they found I had some Premature Atrial Contractions (PACs) that were not terribly worrisome. They recommended no change of treatment at that time. Since then, I notice the PACs occasionally, especially if I have had a lot of caffeine one day (more than about two 10oz coffees worth) or if I have not been getting enough sleep.

What are your physical limitations?

I do not play contact sports because I take anticoagulants, and I don’t scuba dive, fly trick planes, or travel into outer space because of high cardiac pressure. Other than that, my doctors have always (except right after surgeries, of course) told me I was allowed to do as much as I could. My stamina isn’t great, but it has really improved over the last couple of years, since I got rid of my car and moved to a walkable city with good public transportation. I have to climb 85 stairs every morning to get to work. I used to take an escalator that went part of the way up. Then I started walking (trudging, really) up all 85 stairs, taking a couple of breaks on the way. Then, I got to where I could walk up all 85 steps without stopping. Now, on a good day, I can run all the way up.

Is there a special diet or nutritional tips that you have?

Talk with the cardiologist about diet. Make sure you and your child understand the reasons for sticking to a certain diet. My current diet is casually low sodium, casually low fat (but I don’t believe in low-fat alternatives to most things, so I mostly just don’t eat fatty foods), and casually vegetarian (by choice). In trying to be low sodium, it has worked best for me to cut down the sodium of everything I eat, rather than eat no sodium for a few days, then “let myself” have a higher sodium thing. Now, I don’t always stick to that, but overall I have found it easier. If you can stick to it, you start to notice the flavors of food again, and high-sodium things just taste really salty. When I wasn’t very consistent, low sodium always felt like a big deprivation, so I didn’t enjoy eating those foods

How many hours of sleep is normal for you?

When I’m “caught up” on sleep, 7-8 is usually good. I often get only about 6 hrs a night during the week, and then sleep more on the weekend. Recently I have discovered how much more productive I am during the day when I have had a few nights of good sleep, so maybe I will increase my sleep times. I’m a total night-owl, so it’s just so hard to go to bed!!!

Meet Jan (Part 1)

2009-01-22T22:35:00.002-05:00

Jan
40
Atrial Spetal Defect, Patent Ductus Arteriosis, Tricuspid Atresia, Ventrical Spetal Defect

My name is Jan and I was born in 1968. When I was first born the doctors did not know there was anything wrong with me. They told my parents I was Blue because the cord had been wrapped around my neck. It took about 3 months before my parents knew that there was something wrong with me.
I was sent to the Children' Hospital in Boston, MA . Where they discovered that I had an Atrial Spetal Defect, Ventrical Spetal Defect, Tricuspid Atresia and Patent Ductus Arteriosis.
My parents were given the good advice to *take me home and enjoy me* because, they were told, I would never live to be a year old. There only other option was to give me this new, experimental operation called the Fontan. The doctors told my Mom and Dad, flat out, that IF I survived the operating room I would never make it out of the recovery room alive. It was decided that there would be no operation and my parents took me home.
When I was approximately 2 my parents were told that I would never walk. If I did that I would only make it a few steps and then stop and rest. To the amazement of both parents and doctors I walked. And not just a few steps at a time.
As I got older the Fontan was brought up a few more times, but my parents took the wait and see approach. After a few years of this so did the doctors. Its been that way ever since.
I am now 40 yrs old. I held a job for 13 yrs, after graduating High School and going to College a year. I spent 2 yrs taking care of a ailing parent and now I live on my own, I drive, I do almost everything an normal adult does. I still have never had any repairs or surgeries.
Two years I had a bought with Congestive Heart Failure, luckily it was mild but I am not on a low sodium diet and I have to watch my fluid intake. I see a regular cardiologist once every 3 months, a CHF specialist once every 3 months and my Adult CHD cardiology pecialist once every 3 months...
About 5 years ago I joined a few of the other online Heart Boards. Mostly all of them are parents with Children who have CHD's. But I am finding it very helpful to share my story and hear all the stories about the children who are growing up with this. There have been so many wonderful advances since I was a baby and it's amazing to hear how these children can do the thing's I never got to do .

Meet Gretchen (Part 1)

2009-01-20T23:41:00.004-05:00

Gretchen
Age 27
New York City, NY
Hypoplastic Right Heart (HRHS ) and Coarctation of the Aorta
What is something you always wanted to be asked about you disease that no one has asked or something you always wanted to say that you haven't had a chance to?
Sometimes I want to just run away to a tropical beach and live simply until I die young of natural causes.
Give a short description how you perceive your life or felt about as corresponding with the following three words
Past – Happy childhood, lots of confidence, not thinking too much about the future, just enjoying life and doing well in school, with friends, family, etc.
Present – Struggling to define success for myself, deciding what is most important to me, figuring out what I want and what I need in life.
Future – Uncertain (isn’t it always?) Hopeful, but uncertain.
If you could give advice you wished someone told you when you were younger about growing up with CHD what would it be?
This is actually a piece of advice that my parents frequently gave me as I grew up, and it has been immensely helpful to me: Remember that everyone has something going on that’s hard in their life. For you, it might be CHD. It’s one of a great many human problem/opportunities. As I consider all the things that others around me struggle with, I can’t think of a single person I’d like to trade problems with.
What is or are your greatest accomplishment(s) in life (so far)?
I survived my first (and second! And now I’m halfway through my third) year of teaching! This has nothing to do with CHD. I did briefly hesitate before going into teaching, worrying about the stress of the job (high, especially in the first two years) and what effect it might have on my heart, but it’s what I wanted to do, so I did it.
What has having CHD taught you?
Don’t be petty.
Did your parents do "everything right" or do you wish they treated you/your defect differently?
For the most part, my parents did everything right raising me.
When did you first become aware of your own mortality and how have you handled that? How has your family or your faith helped, or has it helped?
I was first aware of my own mortality as I anticipated my fourth surgery; I was 12. Every time I have had a surgery or even a new symptom, the doctors have told my family and me that I am one of the first people who has survived long enough with my condition to be facing whatever it is I’m facing at the time. As a teenager, and even into college, I mostly avoided thinking about my mortality, ironically comforted by the complete void of information available about possible or expected outcomes. My focus oscillated between the two extremes: either the miracles of modern medicine would continue to outpace my condition and I would always have new treatment options and do just fine, or I would eventually become incapacitated and die young, but not this young. My health was great for more than a decade after the surgery when I was 12. So, in the relative immortality of my teenage and early adult years, either option seemed impossibly distant and therefore, comfortable. Still, I never did drugs and I drank only occasionally.

2009-01-19T15:59:00.002-05:00

I have been overwhelmed with the response this site has brought. I am trying to reply to every email I can. This past week has been bitter cold here in Boston, so I have been just going to work and coming home and resting. I am still waiting for people to return their heart stories. I will be posting more about me ,and hopefully soon I will receive some other stories back. In the meantime I will respond to everyone who emailed me.

Teri (Part 3) Birth control, Children, and Work life

2009-01-11T23:49:00.002-05:00

Teri
Age 30
Boston Ma
I was born with Hypoplastic Right Heart, Pulmonary Artesia with Intact Ventricular Septum and moderate Tricuspid Artesia

Do you work? Are there some professions that are not realistic for you?

Well, my dreams of being a ballet dancer or going to the Olympics were pretty much shattered at birth, but besides that I guess I never thought of it. I knew I wouldn’t be some math genesis since at an early age I had problems, it wasn’t till college they realized I had some brain damage in my frontal lobe that helps with the processing of numbers. Other then that I never thought I couldn’t work in a certain field. I think for us complex CHD patients it was about one step at a time. I always saw myself going to college. I just had to survive high school. I was like every other student, but I was dealing huge emotional issues but I tried to act like life was normal.
I started off wanting to be a doctor, so I started the Pre-Med track but I realized how much I would have to give up to science to get there. I wasn’t prepared to spend my life in a hospital as a doctor and a patient. In college I was more into trying to find myself in the world, and then figure out where my passions lay career wise. I jumped from majors for about a year. I settled in business, I guess I thought I could get a good job in that. Looking back though there were about three majors I would have picked before that.
After college I moved to Boston. A city was really my only option to live on my own, and work since I don’t drive. I like working and living my own especially in the city I had everything I needed within walking distance, and if I need public transportation. I have been working full time for 9 years now. I have had two job working desk job one for a corporate retail company, and now I work as a Mutual fund accountant. I learned fast that work is a pay check to me it is what I do out of work that makes me happy. I will have to stop working soon. I am, getting too tired, and it is just getting to painful to work all day, and still try to take care of my apartment and dog. The last year it has been hard to find energy to do things I love, but I realized how much of doing things I love should be my priority. I owe to myself to stop trying to achieve what is “normal”. I don’t need a career, house or even marriage to be happy. Doesn’t mean those things are not nice, but I think it is important especially when you life is so uncertain to focus on things you can do to make your life meaningful.

What do you do about birth control or do you want to have children?

Birth control is very complicated for a single ventricle patient. As a teenager I was pretty much told all I could use is condoms. There are IUD’s some patients have. Since my risk of stroke is so high the only one I could have is the copper IUD implant. The risk of infection would always be there plus the copper IUD can be very painful especially during menstruation. I decided more pain is not worth it. The best solution of course is getting your tubes tied, unfortunately doctors will not perform this often until you are old enough to have a family of yourself so to speak. Then many have to fight their insurance companies to approve the surgery which has stopped many CHD women from doing it. Getting my tubes tied is my next step, I just come to terms with the idea of another surgery, and letting go of the idea of having your own children

If I end up being pregnant the chances of miscarriage, was extremely high due to the fact I am considered severely cyanotic. If I didn’t miscarry I would have to have an abortion. Unlike some CHD defects that doctor think are safe to have children. Single ventricles patient are advised against it I guess the idea of not having children, never really bothered me until recently. I guess once you hit a certain age you start to feel like you should want to have kids and the idea of being a mother is what your friends your age are feeling. I get really hard when you are in a relationship for a long time, and the reality that you won’t be able to have children. I was always thought I would adopt or surrogacy but of course both options cost money. They don’t think my heart disease has any genetic links after looking into my family background, so that is always an option. I guess I am still trying to come to the idea of having children , and being ok I can’t have a child myself.

Meet Anna

2009-01-09T21:37:00.002-05:00

Anna
Age: 37
Your defect(s): Tetralogy of Fallot (Blalock-Taussig shunt @ 18months, corrective open heart surgery @ 5 years, pulmonary valve replacement @ 37)
What is something you always wanted to be asked about you disease that no one has asked or something you always wanted to say that you haven't had a chance to?
I tend to be very forward about my defect and am happy answering all questions or even offering information to anyone who cares to listen. Although, I do hate the use of "disease" in CHD - I tend to use "defect" since disease implies something that started out normal which then changed into something "sick", whereas defect means something was malformed to begin with (rather than being "sick"). I feel "defect" is a far more accurate term.
Give a short description how you perceive your life or felt about as corresponding with the following three words
Past : A huge learning curve with plenty of mistakes, but very few (if any!) regrets. My past has made me who I am today, and I'm very happy with that person. It has also provided me with a rich bank of memories and experiences.
Present : A new beginning. As I am currently recovering from OHS for a new pulmonary valve, I am concentrating on getting well enough to consider my future. Despite the hardships of the last few years, I am still filled with optimism and joy.
Future : I can't wait to get it started!! I have so many plans and things I want to accomplish and with (hopefully) newfound health, I will be well on my way to achieving all I wish for. The future is looking bright : )
If you could give advice you wished someone told you when you were younger about growing up with CHD what would it be?
CHD or not, I think the best bit of advice you could give any child is "You are worthy of the very best life has to offer. Always believe that".
What is or are your greatest accomplishment(s) in life (so far)?
Learning to be completely comfortable with who I am and not being afraid to advocate for myself and others. Also finally accepting that I really do deserve the best life has to offer!
What has having CHD taught you?
I am strong and a survivor. I can face anything. Compassion for others. Beauty truly does come from within. Doctors don't know everything.
Briefly share your story of growing up with CHD
CHD didn't really play much of a part in my growing up. I was told the corrective surgery I had at age 5 "fixed" me and was pretty much treated like a "normal" kid from then on. There were no special concessions - in fact, aside from my surgery scars and bi-annual check-ups, it barely crossed my mind until much, much later in life. I was always the smallest in class and really bad a sport, but then someone has to be the smallest kid - and plenty of other kids sucked at sport too. I also came from a really dysfunctional family and because we moved so much I went through 11 schools in 10 years. I had far more worrying matters on my mind than a heart problem that had been "fixed" when I was little.
How has having CHD changed your life (other then the obvious health issues)?
I've probably always been far more conscientious about my health (diet & exercise) and appreciated how important and fragile they are. One of my goals is to become a dietician and use my experience to try and inspire others to live more healthily to avoid acquiring heart problems.
When did you first become aware of your own mortality and how have you handled that? How has your family or your faith helped, or has it helped?
It probably wasn't until I was in my late teens that I really thought of my own mortality, but it had nothing to do with my CHD. I've pretty much dealt with everything on my own since leaving home at 15... although I was emotionally removed from my family many years before that. There wasn't much sympathy or compassion to be found there. Still, while I hope to have a good many years to live yet, I am very comfortable with the concept of my own mortality. And for the record, I'm agnostic.
When did you realize you had a different life than other children, and how have you managed that into adulthood?
I read a lot as a child and realized pretty early on that while I might have issues of my own to deal with, a lot of other kids had their own problems to deal with too. As for feeling "different", that was less to do with CHD that it was always being the new kid, and the small kid. I developed a very strong sense of who I was and immersed myself in books and learning. Being "accepted" really didn't bother me - it either happened or it didn't. As an adult I still have much the same attitude... I'm not bothered by the thoughts or opinions of people who don't know me well. Nor do I have time to indulge unsupportive people. As a result I have little conflict in my life and the friends that I have are the sort I know will be there no matter what. I feel very lucky.
Do you feel you can be honest with your parents about your fears and frustrations? What are the most important elements in having that trust?
My dad was never really a part of my life growing up. We're much closer now, but still very independant beings. I no longer have anything to do with my mother and hope it stays that way. I learnt very early on to deal with my fears and frustrations by myself and as a result, I am now a very self-assured and self-sufficient individual.
On an average day are you more scared of what may happen, or more grateful for the life you have?
I see no point in worrying about things that may or may not happen. My philosophy is "plan for the worst but expect the best" and in the meantime I try to make the most of each day and enjoy it for what it is. If you look for misery you will find it. I would rather seek happiness and joy.
If you could change something about how your parents handled your CHD, what would it be and why?
They could have told me I could expect surgery down the track, rather than telling me I was "fixed" and there was nothing more to worry about. I don't think it would have changed my attitude to life, but I would have been a bit more concsiencious about keeping cardiac appointments and maintaining my medical records.
How do you keep depression at bay or don't you have any?
I really don't suffer much depression. On the occasions I have suffered it (break-ups, deaths, etc) I tend to need my own space to work through it... usually with lots of Kleenex, but I try to always look to the future and find the positives.
When/what do you tell a boyfriend/girlfriend about your condition?
I'm pretty up front about my condition and often I'll be wearing something that shows my sternotomy scar, so it doesn't take long for the topic to come up. I tell them I was born with a heart defect that required surgery as a kid and since then I've been just as healthy as anyone else. I actually met my current partner when I was originally looking at OHS again, but it certainly didn't bother him and having only just had the surgery now (5 years later), he has been a wealth of support and understanding. It certainly weeds out the heros from the zeros!!
What do you do about birth control or do you want to have children?
I've never wanted children of my own, although I did consider adopting (I always figured there were already plenty of children in the world who - for whatever reason - needed a loving home). For some partners this was a problem and we soon parted ways, but I've always been up front about not having kids and have found someone who is happy with that. I've been told it "probably" wouldn't be a problem for me to have children of my own, but "probably" isn't something I want to bet my life on... and again, I'm really not a "kiddy" person, so it's not something that really concerns me.
Did your parents do "everything right" or do you wish they treated you/your defect differently?
I guess by not treating me any differently I never considered myself different, but a little more information would have been a wonderful thing (like the fact I would probably face OHS again in the future!!).
Name your 3 favorite items :
A B&W photo of my brother and I when we were little kids, my books, my industrial sized clothes-dryer!! (although the new fridge might give it some competition!)
What are your hobbies?
cooking, reading, logic puzzles, and hopefully dancing again.
Favorite movies, TV, Books, Music:
Movies - The Breakfast Club, Fight Club, Pulp Fiction, most stuff by Quentin Tarantino and Christopher Nolan
TV - CSI (original), Top Gear (UK), Desperate Housewives, Mythbusters, Iron Chef (Japan), South Park
Books - anything by Steven King, art/photography books, anything I can learn from, cook books
Any fun facts about you or something you want to say :
Why worry? If it's something you can't change, then all the worry in the world isn't going to help, and if it's something you can change, then there's nothing to worry about!

Meet Betty

2009-01-08T20:38:00.003-05:00

Betty
Age: 40
Your defect(s): TOF-
Pulmonary Valve Replaced
If you could give advice you wished someone told you when you were younger about growing up with CHD what would it be?
Live your life, don't waste it or wait for it to end. Take extra care of yourself, and be more careful than others but GO FOR IT!! HAVE FUN!!! I believe everything in moderation, stop when your tired and listen to your body. But I have also white water rafted in AK, skied snow & water, snorkeled, roller bladed, partied all night, and danced till the sun came up.
Also, I wish they would have told me see an Adult Congenital Cardiologist. I wasted so many years w/ a regular cardio, which was not prepared for a CHD adult. If I had stayed with him, I don't think he would have known to diagnose my PVR.
What is or are your greatest accomplishment(s) in life (so far)?
My two healthy children, and enjoying life. I don't hide my scar, I don't use my CHD as a crutch. It is just something I was born with, like my height, I am only 5 ft. It just the way I am, I can't change my heart defect or my height. But I can deal with it, take care of myself, and wear 4 inch heels.
What has having CHD taught you?
After my PVR 2 years ago, I changed my outlook on lots of things. I am grateful to be alive and enjoy the day, even if it was a really bad day. It is not always easy and I am not always positive and cheery, but I am always grateful I had another day with my kids, husband and family. I used to be strict about my kids sleeping in their own beds, now if they want to sleep in our bed, I welcome it. When they are teenagers, I will be lucky if they let me drop them off at school.
I have also learned to listen to my body and rest when I need to. But I still wonder if that came with age or surgery.
When did you first become aware of your own mortality and how have you handled that?
How has your family or your faith helped, or has it helped? I was not aware of it until recently, when I joined ACHA. But death can come at any time, in an accident etc.. I prefer to plan to live, enjoy and appreciate life.
When did you realize you had a different life than other children, and how have you managed that into adulthood?
As a child I never noticed I was different because of my CHD, I just thought I was different. I did not know why. I had more issues w/ my sister 18 months older, but looked 5+ years older, going out dancing etc and dating guys vs me who looked 12, and did not have her confidence.
Do you feel you can be honest with your parents about your fears and frustrations? What are the most important elements in having that trust?
No, but my parents had me very late in life, and did not have very open lines of communication due to age difference, and they way they were raised.
On an average day are you more scared of what may happen, or more grateful for the life you have?
Definitely more grateful and appreciative
If you could change something about how your parents handled your CHD, what would it be and why?
Raise me not to be scared to try new things, less over protective. It would have increased my self confidence in many aspects of life.
How do you keep depression at bay or don't you have any?
I look at my kids; they make me happy and feel needed. They are 3 & 5 and still need me for so much. I have overcome too much to waste my life being depressed, angry or negative.
When/what do you tell a boyfriend/girlfriend about your condition?
I did not make a big deal out of it, so unless they directly asked about my scar, or it just came up in conversation. Most boyfriends were more worried about my 4 older brothers, than a heart condition. Also, I was lead to believe it had been "corrected", so I did not really know the future effects. I used to describe it like being born with a broken arm. It was corrected, but never works as good as if you had never broken it.
What do you do about birth control or do you want to have children?
I was on the pill for several years. I had two full and uneventful pregnancies. One pregnancy was w/ my regular ob and non CHD cardio, and my 2nd was with a hi risk, cardio specialized OB and an ACH cardiologist. The difference was incredible. Get the right doctors, it does make a HUGE difference. In my 1st preggy, my ob would not deliver via C section w/out the cardio in the room, the cardio was in Disney. They were literally fighting on the phone in front of me, while I was prepared for my C-section. Both dropped me and told me to go w/ hi risk and specialist for 2nd. I wish they would have done that with the first.
Did your parents do "everything right" or do you wish they treated you/your defect differently?
Parents never do "everything right" They did a lot right especially not being ashamed or embarrassed of my scar, but they were very overprotective, and it raised to be overly careful and afraid to try, it stunted my confidence.
Name your 3 favorite items My kids, my hubby & my family
What are your hobbies?
time with family, beach, sun, fun, fishing, pool, BBQ's , boating,
Favorite movies, TV, Books, Music
Almost anything except gory scary films, techno music, and depressing movies or books
Any fun facts about you or something you want to say
Live life have fun and do not raise your kids to be afraid to try, (within reason) Be grateful for what you have, some else always has it worse. I am grateful out of all the CHD, I had TOF, because it can be corrected, and even when I needed the PVR, I was grateful, there was surgery to corrected it, and a brave pig. I joke, I don't feel guilty eating roast pork, because it just saved a life. If we had not bought a pig to roast, the pig's heart valve would not have been donated and saved another valve replacement recipient.

My story (part 2) questions from parents

2009-01-07T00:35:00.005-05:00

Teri
Age 30
Boston Ma
I was born with Hypoplastic Right Heart, Pulmonary Artesia with Intact Ventricular Septum and moderate Tricuspid Artesia.
When did you realize you had a different life than other children, and how have you managed that into adulthood?
I think I always knew to tell you the truth, I didn’t understand what was different about me but it was just something I knew. I could never play like the other kids. Gym was out of the question after about a few years into school. I always had friends, but I have to say that I was a bit of a loner a lot of the time. I don’t know if it was partly due to the fact I am an only child but I know that I spent a lot of time by myself trying to do things on my own when my friends were playing sports, or going to dance classes.
It was harder for me in high school, I guess the mindlessness of a teenager who thinks boys/girls, clothes, and TV and their lives revolved around it. There I was freshman in high school and had just spent 23 days in a hospital battling for my life. I had about a foot and half worth of scares on my body. I looked in a mirror and the girl I was gone. I have to say looking back high school was a bit of a depressing time where I acted most of the time. I pretended to care about all the stuff kids were supposed to care about.
In college I decided that I just need to live the life I wanted, and if I was going to be real I needed to try to find myself so to speak. I was always told by the doctors “we never know how long you have left” so I decided what I wanted and went for it. The great thing about college is students come from every place in the world every walk of life. One day I went with a friend to a party at a neighboring college and I was sitting talking to a guy I had met briefly at a bus stop the previous semester and we were talking about college stuff and he leaned in and whispered in my ear “ I know your secret” . He then grabbed my hand and said your nails are blue. He then lifted his shirt and there was a zipper scar down his chest. He was 6’3 man from Kenya and I was 5'2 from MA but we had the same story.
How open were your parents or doctors with you about teenage things...like experimenting with drugs, drinking, smoking, etc.
I can say I have never done any drugs, I had enough symptoms. I do drink I have never gotten intoxicated to the point I can’t walk or was sick because of it. I tried smoking a cigarette once just to see what it was all about. I already have a hard time breathing, common sense told me never to try it again. I think most patients with CHD are smart about not doing these things. I think we are already too tired, feel too much pain, and probably took way to much medication in our life to want to take more drugs. All my friends knew about my heart disease, and no one ever pressured me to do anything. I actually like the fact I was the sober one, because I always had the best stories I could tell my friends all the funny things they did.
I say to all kid out there. Tell everything you do to your doctor especially if it is an emergency situation, it could save your life. They aren't aloud to tell your parents and trust me if you parents find out you did something bad like take drugs well I think they will just be glad your alive.
As you got older were you less likely to talk to your parents about any symptoms you may be experiencing?
No, not really. I always would call my mother and tell her what was going on with me even when I moved away. In high school I think my symptoms were apparent, the symptoms got worse as I got older and some would come and go so I think parents sometimes have a hard time accepting things. Like you did that a month ago why can’t you do that now? Some of us have talked about how some people even people in our own families think we are lazy or even trying to use our CHD to our advantage I know since I have been a teenager I go through stages of feeling great , and then all I want to do is sleep.
At what point did you want to go to the doctor by yourself and not have your parents with you?
Well my mother went with me to all my appointment till I was out of college. I don’t drive so that was a big part of it. There weren’t too many adult cardiologists till recently, so I was still seeing a ped cardiologist. As soon as I got a job and lived on my own I started going to the doctors by myself. Any major surgery my parents come to talk to the doctors with me, but I don’t feel the need to have them with me, but I do not care if they want to come, the more the merrier.

My Story Part 1

2009-01-04T21:51:00.001-05:00

Teri
Age 30
Boston Ma
I was born with Hypoplastic Right Heart, Pulmonary Artesia with Intact Ventricular Septum and moderate Tricuspid Artesia. Surgeries: Waterston shunt 1978 at birth, Glenn shunt in 1992 and dozens of catherizations. Other surgeries AV fistula to improve oxygen blood flow to lungs (unsuccessful), Pacemaker (due to complete heart block) 1992, 1998, 2005, and partial claviculectomy on left side (bone was pushing down on my Glenn shunt ). Still cyanotic oxygen at rest in upper 70’s to lower 80’s.
Give a short description how you perceive your life or felt about as corresponding with the following three words
Past – Trying to find myself in the “normal world”. I was able to achieve the normal life, but it was very hard journey
Present- I know what I am passionate about and what is important to me. Just trying to accept my health issue and planning for how to deal with them
Future-Enjoying time doing things I love and trying things I always wanted to do
What is or are your greatest accomplishment(s) in life (so far)?
I was able to graduate from high school, went away to school, graduated college, and moved to the city, and live on my own and work full time. I have lived the life that every other child lives I just had a lot of more obstacles to overcome along the way.
Briefly share your story of growing up with CHD
I was born in 1978, my parents had no idea that I had CHD until birth, within hours I was having the Waterston shunt. My parents were told I would not survive. I remember as a child that I would often have to leave the doctor’s office and sit outside. It wasn’t until about 5th grade when I overheard my doctor mention that I could die to my parents( every year since then I have been pretty much told we don’t know how long you have left). I always knew I was different. I wasn’t allowed to play gym or even go play outside in the winter or really hot days. I remember sometimes I would sneak into a hallway and sit in the window next to the girl’s bathroom and watch my classmates play. Some people would call me smurf which at first I didn’t think much of since it was my favorite cartoon but as I got older I realized how different I was. It wasn’t till I was a pre-teen I started to notice how keeping up with my classmates was starting to get impossible.

When I was 14 years old I had just finished 8th grade and was about start my first year of high school. I was told I needed to have a surgery that summer something called the Glenn Shunt, to tell you the truth I didn’t really ask many questions I was wrapped up in being a teenager. I knew it was serious by the looks on the faces of my Mom and the doctors. Little did I know that a large portion of kids who received the Waterston Shunt operation were dying due to defects in the operation. I was told about 7 days in the hospital and a few weeks recovery. So I waited for the end of July to come around and I had my surgery well, 7 days turned into 23 days, 16 of which were in the ICU. I got out merely a week or two before freshman year of high school. I suffered complete heart block after the surgery had to have an emergency pacemaker implanted , due to all the stress I had bleeding ulcer and had to get it cauterized immediately (not a very pleasant experience). I was sent home and I started getting ready for school. As soon as I got home everything went back to normal, but it wasn’t, everyone went on with life as normal they thought I would do the same.

They say there are moments in life that you know when you life will never be the same. It was my first shower I took alone in months. I cleaned off the steamed mirror and didn’t recognize the girl staring back at me. It took me a long time to find who I became that summer. I ended up finishing high school, went away to college. It wasn’t until college I actually met people with CHD. None had a complex heart defect like me but I finally found someone to share stories with and as silly as it sound it was the first time I realized how to be OK with my disease.

After college, I moved to Boston, got my own apartment and work full time. Life is getting more challenging every day. I know I have achieved a lot, which most people with my condition never get to do. As I get older, I am focusing on what is important in life following my passions, and trying all the things I want to do, going places I always wanted to. I can’t control getting older or even how my health is being affected by age.

How has having CHD changed your life (other than the obvious health issues)?
When my classmates were taking dance classes, or participating in sports. I knew I wasn’t able to do any of them so I would spend hours in my room writing and drawing. I found, art and other creative outlets; my disease has shaped what I am passionate about.

My disease has taught me what it takes to have strength, and faith every day I get out of bed and every night I lay my head on the pillow. I have face my own mortality every day, I learned to live by what my heart tells me , I worry just like everyone does but I can only change what is right now but I have to have faith in what might be.

CHD taught me to listen to people and after years of covering up my pain and trying to pretend my life was normal among my friends and even family I can see things in people, I know when people are hiding or over compensating for something. I like to try to find the real person inside them.
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*This is just a portion of questions I will answer. I hope this will inspire others to participate too. I just wanted to thank all of the people who are willing to share theirs stories. For me telling what I have been through, and what I have learned about life with CHD has become a passion, but even more then that having CHD has taught me what is important in life, and I think from sharing where we came from, we can help each ,parents and children who are growing up just like us*

Welcome

2008-12-29T10:22:00.000-05:00

As one of my new years resolutions to myself, I thought I would start a blog of adults with Congenital Heart Disease. Instead of talking about their disease, talk more about the stories, and how they see life. I want to ask a series of questions and see what answers I get. Also I want to be able to let some of the first generation of survivors tell their stories. Together I hope to give hope to future generation of survivors, but also inspire each other to live life even in the face of such challenges.