HOPE! That is a BIG word with BIG Meaning!
The definition of Hope: "a virtue defined as the desire and search for a future good, difficult, but not impossible to attain" (taken from thefreedictionary.com)
Hope is something we all need and hold on to! Hope can be difficult but it is NEVER impossible and CHD Adults are living proof of that Hope!
I know you don't hear about CHD Adults in the CHD Community very much, but we are here! There are over 1 Million of us in the world! A little over 80% of CHDers make it to Adulthood AND over 50% of CHDer today are Adults!!
The True reason you don't hear from us much is despite all over our hardships, pain, and limitations we are busy living "Semi-Normal" Lives! AND that is an AWESOME and AMAZING thing!! We are told my many to live and LIVE we do despite any limitations!
Here is 17 faces and stories of HOPE starting from the youngest to the oldest (I'm included):
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Kenneth Castano, 22
CHD: HLHS (3 Open heart, 3 caths., 1 pacemaker in 2005)
My name is Kenneth and at the age of 22 years old I'm proud to say that I'm the first Northeastern SURVIVOR. They say I'm the first Latino nationwide....Who knows....First 16 years with NO meds whatsoever....Currently on 3 a day..Fontan and all other surgeries done by Dr. Norwood HIMSELF at CHOP..I am a recent graduate of the CNA program and will be an RN in 2 years and a half. I already have a job at a ER in my home-state, NJ....Die-hard NBA fan...Favorite team: NJ Nets....Huge NY Yankees fan....Huge sports fan period...
My main goal right now is to spread as much CHD Awareness as I possibly can. CHD Parents: Please allow your child to live a normal life. They will learn to adjust on themselves, however, knowing their limits. If they feel they need to stop and take a break, they MUST stop...I want parents to know they can reach me on Facebook and ask me anything they want. I always look forward to meeting new CHD parents and answering questions...In my area? Then I want to meet you! I would go pay you and your little one a visit....Oh yeah, one more thing.....CHD Parents and Dr.Norwood YOU ARE MY HEROES....
Contact Information for Kenny: Facebook page "KENNY- ADULT HLHS SURVIVOR" or add him on FB: Kenneth Castano
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Zoe Dickson, 23
CHD: Transposition of the Great Arteries (Senning procedure at 9 months, Pacemaker implanted at 22 due to a slow pulse of 30)
I work at southampton general hospital uk as a nursing assisstant.
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Lauren (aka me...since your reading my blog), 23
CHD: Tricuspid Atresia, HRHS (I've had 2 open heart surgeries (including the Fontan), 2 heart caths, 3 eye muscle surgeries..I have a few other medical issues...eye muscle disease, scoliosis, muscular skelio spaums, etc)
I wasn't diagnosed till I was 11 weeks old. My mom knew something was wrong as I was having all these symptoms and for 6 weeks the pediatrian blew her off till one day she demanded that he send a write up so she could take me to the ER and that's what happened. An intern at the ER had just learned about CHDs and knew that it was most likely my heart, he took me from my mom for an x-ray. The x-ray showed my heart very enlarged and most of the right side of my heart missing. I was in severe heart failure and they weren't sure I'd make it the transfer to the Children's Hospital, but I did. I surprised so many doctors and have thrived! My childhood was "semi-normal" minus meds, annual check-ups, some limitations, and a few bumps in the road. Growing up I was in plays, bowling, and enjoyed the simple things in life (still do). I never had many friends, but the ones I did have I kept close. I had many life experiences (minus my CHD) that I'm grateful I had and grateful to have had such a pretty happy & "semi-normal" childhood despite limitations like not being able to be outside when it was really hot, not being able to play contact sports, or not being able to have the energy that other kids my age had.
At 23, I'm over 21yrs Post-Fontan and doing pretty well. I do have some issues, but I continue to live to the fullest I can despite my limitations. I have a wonderful and amazing boyfriend, Chris, of over 2 years. I'm graduating college this December with a degree in Psychology and I want to be a Child Counselor for children with health issues. I love to hang out with my boyfriend and people that mean the most to me (close friends and family). I enjoy writing, reading, bowling, talking, laughing, eating, and just enjoying the simple things in life. I've seen and done many things in my life including a one year temporary move to California. I don't know what the future holds for me... it will most likely hold more surgeries, procedures, etc BUT I have many goals I plan on making like writing and publishing my own book, getting married, having children (whether through adoption and/or surrogacy if I can't carry my own), and enjoying more new "adventures". My life with a CHD hasn't been easy, but it's been full of many blessings. I'm grateful to all the doctors, surgeons, my amazing and strong parents, and God for everything in my life.
Advice to CHD parents: Give your CHD as "normal" as a life as you can despite limitations. If they can do something, then let them! Let them live as much as the can! No one is promised tomorrow, so where ever they are make the best and make memories. Don't focus or dwell on their CHD all the time and as they grow make it a point to tell them age appropriate things, yet teach them not to dwell either.
Contact information for Lauren: This blog (www.laurensheart.blogspot.com), e-mail: Sweeetie2516(at)aol(dot)com (Sweeetie with 3 e's), and you can find me on Facebook under: Lauren Celeskey
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Morgan, 24
CHD's: VSD, sub aortic stenosis, bicuspid aortic valve, malformed mitral valve, & coarctation of the aorta, (VSD Closure with Dacron Patch 4/21/88, Sub aortic resection via OHS 3/19/1991, and Radiofrequency Ablation for SVT 3/26/2009. I also have Asthma and GERD with Nissen Fundoplication 2/2006)
My name is Morgan, I am a 24 year old Congenital Heart Defect SURVIVOR! Yes, I've been through alot of stuff medically, 2 open heart surgeries, and an ablation among other things But first and foremost I am a Daughter, a Sister, a Girlfriend! I'm A Full Time Registered Respiratory Therapist! I love to listen to music (Think Dave Matthews, The Tragically Hip, O.A.R. I'm a product of the 90's) I'm happiest Sitting in front of a bon fire with friends and family or cooking out on the grill after a long summer day of puttering around outside. Yes, I have bad days! Everyone does. The trick is to roll with the punches, and to know how and when to listen to my body!
If there's anything I'd like CHD parents to know is that as hard as it seems early on, There is a big likelihood that your CHD kid will probably grow up to be a "normal" (wait, what is that?) kid! Don't forget this fact! It will pay off big in the long term. Don't smother your CHD'er more than likely they will be able to self regulate their activity. Teach them early on to do this! Teach them about their heart early on, let them know its ok, and you'll be there to answer all their questions! Teach them to make their way taking care of themselves. . . as hard as it may be for you to accept, they will eventually have to take their heart care into their own responsibility. . . and feel comfortable and confident doing this! Planning for the future is the easiest way to help this happen! Empower your CHD'er to ask questions, talk about the things that concern them about their CHD and to learn to live for the future! Just know, and teach them, that no matter what, there will always be support available
Contact infomation for Morgan: mtromblyrt@comcast.net
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Gabrielle, 25
CHD: Hypoplastic Left Heart Syndrome (Surgeries- 2 open heart before age of 2 Norwood stage one and Modern Hemi Fontan, Stent placed, Too many caths to count)
I'm 25 year old from Michigan. I grow up in a small town with my mom and brother. I have a 6 month old kitten named Simba he is a companion animal and helps reduce stress and helps keeps my blood pressure normal.
I currently live in a one bedroom apartment on my own in Flint Michigan with my cat. My favorite music is country and christian. However my theme song does not fall into either category that song is TubThumping by Chumbawamba, the lyrics sum up my life with HLHS well:
"I get knocked down, but I get up again
You nay ever gonna keep me down."
I feel them lines are good lines to live by. I have been knocked down but as my cardiologist says no one will ever keep me down.
I think I'm most proud of living my life. I don't let having a heart defect get in my way of living. We get only one shot at this life on earth we should live it. I also am proud of finishing a 10 mile race called the CRIM. It is this big thing in Flint and a friend one year said you should walk the CRIM. Doctors always said I would never go out and be in any marathon race so to prove him wrong I partook and finished a mini-marathon, took me over 3 hrs to finish, but I was not the last to finish, and I raised over $500 for Childrens Heart Foundation for finishing. I like to raise money and awareness for CHDs.
I do have a few goals one is to graduate from Michigan-Flint someday. I want to work for a heart organization and help research and other families. My dream is to see a reason why HLHS happens and find a cure for it once and for all in my lifetime.
Advice/tips for CHD Parents: We are always grateful for what you chose to do for us. You chose to give up a chance at life. Even when were growing up and teenagers and you have to say no to something we may not say were grateful we may ever say we wish we weren't sick, or other things. Remember we speak it out of anger not towards you, but towrds our peers, towrds ourselfs. We are angery right now because we are different and we haven't yet learned to accept it outwardly. It takes us time to accept being "different", accept being "sick". We don't like it anymore then you like seeing us sick. So even when we don't say it thank you for choosing life for us.
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Cortney, 25
CHD: Complex cyanotic heart disease including ventricular inversion with LTGA, a hypoplastic inverted right ventricle, & coarctation of the aorta (Has had a coarctation repair and a classical Fontan with an atriopulmonary connection - 2 open heart and 2 closed heart surgeries as well as an ablation)
I love fireworks, summer is my favorite season and kids make me smile. I dislike pure chocolate (I know, I’m crazy) and rollercoaster’s freak me out. I love my Fiance more than than anyone could imagine, I have amazing friends and as you can probably guess my family means the world to me. I am a picky eater, I have a congenital
heart defect and I am fluent in American Sign Language. I am a teacher for deaf and hard of hearing children, I am 25 years old and I love to travel. That is pretty much my life in a nutshell!
Shocked? Confused? I know, it seems odd that my congenital heart defect is right in the middle of being a picky eater and the fact that I am 25 years old. Believe it or not that is how I view my defect. It is simply part of who I am and what makes me, me! I have had 2 closed and 2 open heart surgeries, the last one was when I was 8 years old. Yes, of course, since then my life has been a rollercoaster (and I already told how much I dislike rollercoasters). Numerous medications, lots of doctor appointments, hiding my scars and not being able to run the mile in 4th grade has not been a breeze. But, being able to focus on the positives in my life and not making my defect the definition of who I am has made me enjoy life to the fullest.
I promise you that I have the best parents in the entire world. My mom knows me better than I know myself and my dad has made me an optimist (and if you have a congenital heart defect, you know, you MUST be an optimist). So you can’t hike to the top of a mountain? Believe me, taking a cable care up and not getting sweaty blistery feet is better anyways. So you have scars on your chest? At least you can appreciate every moment of your life. So you are the most fragile of all 4 siblings? At least you have brothers and sisters who worry and care about you. So you have a hallucination as you wake up from surgery that a little man, who looks exactly like the guy from the Monopoly board game, tells you not to give up because you have too much to lose? At least you have hope. Blaming your congenital heart defect for your patience, kindness and compassion isn’t so bad, right?!
It’s weird how I only remember certain things about being a kid with a congenital heart defect. I remember waking up in the ICU squeezing my Nonnie’s (grandma’s) finger. I remember the excitement I felt when I came home form the hospital and all of my neighborhood friends welcomed me with posters and balloons. I remember the little guitar that my grandparents bought me to cheer me up after surgery. And for that, I can honestly say that I am the luckiest girl in the world. I have more people who love and care about me than I could ever ask for.
Yes, I do know that my life will continue to have its ups and downs. Will I need to have another heart surgery? Will I be able to have children? How many times will I have to switch my medications? The list can go on. But one thing I do know is that I will always continue to focus on the positives. My Fiance and I are getting married in July and there is nothing that will stop me from smiling now. If there is a blip in my life I must listen to my dad, “that too will pass”. The same goes for you. Yes, you. No matter what happens in your life listen to the little Monopoly man, life is waiting for you!
Contact Information for Cortney -Email: cortneyambrose@gmail.com
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Yasmin, 25
CHD: Tetrology of Fallot (2 open heart surgeries)
Hey There. My name is Yasmin and I am 25 yrs old, and I was born with a heart condition callled Tetrology of Fallot. I have had two open heart surgeries and I had my first one at the age of 3 yrs old, and my second at the age of 20 yrs old.
When I was born, I was called a preemie which meant that I was premature and my parents were wondering why I wasn't a pink baby! I was a "blue baby" and I stayed blue for a very long time. My Drs ran all the tests such as X-rays, ECHOs, EKGs, and CT scans; they didn't find anything in the X-rays, but when they did the ECHO and the EKG they discovered that I had VSD (Ventrical Septal Defect also known as pinhole) and ToF (Tetralogy of Fallot).
I am the wife of a loving man, mom to three great lizards, sister, daughter and aunt. I am a high school graduate, working to become a nurse so that I can help families. I love my life the way that it is and wouldn't give it up for the world.
To any CHD parents: I would suggest that you let your child grow up as normal as possible, don't be over protective, just let them be a kid. As they get older and wonder why they have a scar down their chest, tell them, and don't sugar coat it.
Contact Information for Yasmin: If you want to contact me you can at: yasminsouthwood@yahoo.com
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Alexia, 25
CHD's- Double Outlet Right Ventricle, Multiple VSD's,Mild Pulmonary Stenosis
(Procedures-Pulmonary Artery Banding at 2 days old, BT Shunt at 6 months old, An experimental repai for the Double Outlet Right Ventricle at 4 1/2, An Aortic Valve Replacement at 12 years old, A 2nd Aortic Valve Replacement at 19 years old, 2 Cardioversions to return my heart to a "normal" rythm (1 in 2004 and another one in 2008), Countless caths, 1 cardiac CT)
I have had the same cardiologist since I was 2 years old.My mom and I had been living in Sacramento for six months when we found out there was a Pediatric Cardology practice just fifteen minutes away from our house.She doesn't remember much of that first meeting except feeling overwhelmed. My grandmother accompanied us and she was the one who from the begining bombarded the cardiologist with question after question.To this day he still avoids talking to her.In fact it's an old family joke that he's afraid of her.When I was 4 1/2 it was time for my 3rd OHS. It was supposed to be the Fontan,but the idea that I could need a heart transplant later in life scared my mom so she asked if there was another option. Well the team at UCLA worked on it and they came up with an experimental surgery.I don't even know the name of it,or if they do it anymore.But we went for it and it was August 1990 when I had that experimental repair.I was hospitalized for 3 weeks.I then had a cath when I was 7 and then another one when I was 10.At age 12 I went into Congestive Heart Failure. I was extremely sick and no one was sure I'd even make it off the operating table.I needed an Aortic Valve Replacement and fast.I made it through the surgery and I was put in a medically induced coma to let my body heal and after six weeks in the hospital (4 of which I was intubated) I was released. For my most recent surgery I was in much better shape and this time spent a record 8 days in the hospital following my 2nd Aortic Valve Replacement. I have had a few issues with arrhythmias,but nothing requiring hospitalization for nearly 3 years.
I think the thing that surprises people most often is how much of a coffee drinker I am.I am pretty sure I got that from my mom.I also hate the smell of bananas for some unknown reason.That is a recent development. Up until recently I had always had cats in my house. My favorite color is purple and in fact I cannot stand the colors orange or yellow. I seem to gravitate to the darker colors for some unknown reason.I love music and I am a huge movie buff.I was also engaged at one point,but I felt like I was too young to be making that kind of commitment to someone so I broke it off.To this day we are still friends which I am so greatful for.
I have obtained two degrees at my community college.One in Criminal Justice and one in Social Studies. I also technically graduated from the community college 2 years ago,but I am hanging around until I figure out my career path.I have really been struggling with figuring that out.I have yet to find my niche.I love to read and not just boring textbooks either but really good thrillers.Ones that have you on the edge of your seat.At this point I feel as though I am at a crossroads in my life. I don't know what I want in regards to my career or love. I know I want a career and I want to fall in love,but I am no hurry to rush any of that.I'd rather wait and know for sure that the choices I make regarding love and my career are the right ones for me.
The most important thing I think parents need to know is to trust their instincts. They know when something's not right with their child sooner than anyone else. They need to be their child's advocate. The second piece of advice I would give parents is to tell their child the truth. When something is going to hurt,tell them because they will remember for a long time if you lie to them.Another thing is not to let your child live in fear. Of course it's scary having something seriously wrong with the heart,but no one is promised tomorrow and even if they don't have a CHD,they should still live life to the fullest.Encourage your child to live life to the fullest,despite any limitations they may have.
Contact Information for Alexia: Email: amb.369@hotmail.com, Find me on Facebook under Alexia Boesen.
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Jason, 26
TGA, VSD, Pulmonary Stenosis (3 open heart surgeries and many Cath procedures)
I'm a 26 year old survivor of TGA with my right ventricle still doing all my pumping. When I was an infant, I had the senning procedure. It was still unsafe for them to do the switch at the time, because It was such a new procedure and a new thing. They only gave me a 20% chance of living, but I fought and 26 years later, i'm still here. I am married to my Beautiful wife Jennifer. We have been together for almost 8 years and almost married for one now. I got my nursing license and I am currently a treatment nurse at a local rehab hospital. It really keeps me on my toes. I try my best to enjoy my life as best as I can. My wife and I are expecting our fist baby, and we couldn't be more happier.
Hobbies- I love to go to car shows and drag racing. I love driving my car and just hitting the open road.
Goals-I would love to go back to school and get my RN and work at a cardiac center.
I am most proud of myself by getting my EMT license and my LVN-II license. Also proud of myself for just being here today.
My best tip for any CHD parent is don't let the CHD run the child's life, let the child live their life with a CHD. If the MD tells you it's ok for them to run or play sports, try your best to get them to play as many sports as you can. Let them swim, (if they are cleared to) and let them enjoy their life.
Contact Information for Jason: You can find him on Facebook under: Jason Riley
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Christopher, 26
CHD: Tricuspid & Pulmonary Atresia (Waterson Shunt Aged 12 Days &Various Other Surgeries Not Related To Heart) Had Heart & Double Lung Transplant Aged 22, Struggled With CHD For 22 years until i got my lifesaving transplant
Hobbies Are Watching Horse Racing & Wrestling Listening To Music also I Support Newcastle United Football club (Toon Army) I Love Playing Darts and going to Music Concerts
My Proudest Moments Are: How my mom has coped with my illness she has sacrificed most of her life to support me, Meeting Girls Aloud Before My Transplant It Was So Special, Proud To Be A Member Of An Exclusive Club CHD, Going To London And Having My Picture In A Gallery, Getting Out Of My Wheelchair And Living My Life After 20 Years Of Pain And Suffering
My Advice Is Never Give Hope As My Doctors Said I Would Not Survive Into My Teens HOW WRONG THEY WERE !!! And Always Have Faith In Your Children They Are Stronger Than You Think
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Jeni, 25
CHD: Hypoplastic Left Heart Syndrome (2 open hearts including the Fontan and a pacemaker)
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.
**Taken from her interview on another blog: http://inspiringhearts.blogspot.com/2010_01_01_archive.html
Contact Information for Jeni:You can add her on Facebook under: Jeni Busta, BUT please let her know who you are & why your adding her. Thanks.
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Stephanie A, 27
CHD: Perimembranous VSD, Sub-Aortic Membrane/Sub-Valvular Stenosis, Dilated left atrium with increased volume index, and cardiac rhythm issues. Fortunately, never any surgeries!
I'm 27 years old and live in Indiana. GO COLTS! :0) I am a Nurse Practitioner and work in cardiac care in the hospital setting and am pursuing my Doctorate degree at the present time. I am passionate about my cause and have lobbied on Capitol HIll with ACHA to help spread awareness for congenital heart disease. I ran my first marathon this past October, love my family and friends, and love traveling.
I would like to let CHD parents know to treat your child NORMALLY. My parents always made a point to not differentiate how I was treated from my two sisters. I attribute this as the reason why I was never held back by having a heart defect.
Contact Information for Stephanie A: Always available to talk to anyone in the CHD family. Facebook (Stephanie Arnold) and email are best. --Stephie21421@aol.com ****************************************
Stephanie V, 32
CHD: Congenital Heart Disease consisting of multiple heart defects, (L-transposition of the great arteries, single ventricle tricuspid atresia, pulmonary stenosis, atrial septal defect, right aortic arch and cyanosis... also born without a spleen (asplenia)...Surgeries that have been performed: Left Blalock Shunt at 6 months old, Glenn Shunt at the age of 10, followed by a Modified Fontan at age 14. *I love my scars!!!* I've recovered from 3 transient ischemic attacks (mini strokes) and have had too many tests to count. SO, clearly I am here for a reason!!!).
I'm now 32, and doing as well as can be expected physically and living a fairly normal life. Due to the heart problems, I'm unable to work, drive or have my own children. I'm trying to be more physically active to become healthier and stronger. 2010 was the first year that I've actually put on some weight and don't look so sickly. I enjoy being a 'home-maker' and taking care of the house and my fur-babies! (I have 2 dogs and a cat.) I enjoy reading, writing, and playing on the computer, I love camping, and being outdoors in the summer (if it's not too humid.)
Growing up with CHD was a struggle, I never felt like I fit in, as I was the only one in my hometown with a serious heart problem and would have to travel 2 hours or more to the cardiologist. I was often made fun of and would come home from school crying on a regular basis due to the teasing, because I had "purple lips". I missed a significant amount of school due to tests and surgeries, but managed to pass all of my classes. And when I thought grade school was tough, highschool was much harder as now there was a whole other larger group of kids to ruthlessly tease me. I fell into depression because of this, and became suicidal. My mom, who is my rock, gave me a wake up call, and I remember to this day what she said to me. She said " You are stronger than them, stronger than their ignorance and that I didn't try all these years to keep you alive for you to give up on yourself, you've made it so far, keep going..."
My words to all of you heart parents...Please, be strong, God won't give you anything you can't handle. It seems unfair, and you may not understand the reason for the illness, but if you spend your time worrying about why your child is ill, you will never have peace or be happy. Be there for your heart child, listen to them and take it one day at a time. Thank you for taking the time to read my story.
Contact Information for Stephanie V:You can contact me at Tess13@live.ca or find me on facebook, Stephanie.Voakes ...Please just put CHD in title or friend request.
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Christy, 33
CHD: Tetralogy of Fallot with VSD and PVS (My first surgery was in 1981 I was 2 years old, I had my pulmonary valve replacment when I was 30 in 2007)
Since my first surgery I was pretty normal. Did a lot of things that my brothers and sisters did. I also played sports in high school. I was a big time runner. still run today. but not as fast. I am also married to a wonderful man. hes been by my side though it all. The best thing that ever happen to me was becoming a mom. My son was also born with TOF. Doctors say it would be a 50/50 chance of passing it to my child.
I love to have fun. I am one for not letting life pass on by. u have one life so LIVE IT! I have over come alot in my 33 years. the worst news after living with only having one surgery was the though of having another one.
I am doing well as of today. I don't see my doctor until 2012. I was going yearly. I still am very active. I do have a part time job. and I am still running. a few days a week at the gym.
Contact Information for Christy: I do have a facebook page so feel free to add me: Christy Smith
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Angela (Angie), 35
CHD: Tricuspid Atresia (3 Open Heart Surgeries by the age of 8, One was the Fontan Procedure)... Heart Transplant in 2009
I was born with Tricuspid Atresia on 2/11/75. They doctors never found my disease until I was 6-8 weeks old. I didn't have my first surgery til I was 4 or 5 years old. They thought I was to little and not strong enough til then. My second surgery was the Fontan procedure. My third was to clean an artery or so they thought, they did not need to do this but fixed an artery. (I believe) I was well for a long time until I was 16. Then they talked of a pacemaker because of Atrial Flutter. That never happened. At 22 I got married and began having episodes of flutter again. Then the put a pacer in which caused more a-fib and I had to have two cariac ablations. I still remained ill, got divorced and moved back home with my family in 2002. I became ill again in 2005 and they replaced my pacemaker. 2006 I went in to A-fib again and was in so long it is believed I had a mini-Stroke. Feb 2007 I was told I needed a Heart Transplant! I was going through testing as I planned my wedding. They found a lump in my throat that had to be biopsied to be sure that I didn't have cancer... I had a peri-thyroid removed. The Monday after my wedding, and was placed on the list on Sept 12th, 2007. I waited for my Heart until Sept 28th, 2009. Now 1 year and 4 months later I feel better then I ever have and still wonder what I should. After never being able to do anything you are afraid to try new things.
Love Pittsburgh Penguin Hockey and Notre Dame Football. Goals: My family and I run a non-profit organization to help other CHD and Heart Transplant Patients with Medical Bills and Medications and raise awareness for CHD and Organ Donations. We also you our foundations to raise awareness of Peritoneal and Ovarian Cancer as my mother just past of this diagnoses!
What you want to let CHD parents know, tips, etc. I am now 35 years old... when I was born they never thought I would survive or that I could even be considered for a Heart Transplant. Technology is ALWAYS progressing... they found ways to keep me alive and I am 1 year and 4 months out from a Heart Transplant! Keep the faith that Doctors will come up with a way to keep your little one safe and going!
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Kathy, 36
CHD: Tricuspid Atresia and Pulmonary Stenosis includes ASD and VSD (Potts (1974), Central Shunt (1980), Reconstruction of the Potts/Modified B-T shunt (1989), Classic Glenn (1989))
Hello!!! I am one of those old heads with a heart defect. When I was born in 1974, the pediatric detect a heart murmur, but told my parents to take me home I would grow out of it. I am 36 and still waiting to grow out of it. I was sleeping through the night and not eating. At my 3 week check-up, my parents were told to take me to UVA. There they told them that they could see the blood going into my heart, but not exiting. I was to return at 7 weeks of age. At that time, a heart cath was preformed and it was discovered that I have Tricuspid Atresia. My parents were told that I would likely not survive, but if they wanted me to have a chance then they needed to operate. I had the Potts done at this time. (I do not believe this surgery is done anymore.) I came home after 2 weeks and started thriving. I was still slow to gain weight and I didn’t really walk or talk until I was almost 2 years of age. (Back then there was no speech therapy, physical therapy or feeding tubes.)
At the age of 5, I returned to UVA and had my second surgery, the Central Shunt. I remained in the hospital for 3 weeks and returned home to thrive some more. It took me a long time to learn to read and I was finally identified as Learning Disabled at age 10. I was removed from the program at age 13 because they couldn’t help me anymore. I also took Physical Education and hated every minute of it, but I did it.
During this time, it was noticed that my Left Pulmonary Artery (LPA) was very narrow and this limited the likelihood that I could have the Fontan. Finally, at the age of 15, I was taken to the Mayo clinic for reconstruction of the Potts in hopes of forcing my LPA open. It did not work and three weeks later, I had the Classic Glenn done. I made the decisions for these last two surgeries myself. I have studies the human body and heart for many years and my parents knew that I understood it better than they did.
In 2007, I had my last heart cath and it was discovered that I my LPA has closed off with a few collaterals feeding my left lung with blood. My prospects for future surgeries are limited. I have been offered a heart/lung transplant since I was 10, but I refuse. My oxygen stats run in the 80’s.
But what about me! I am happily married to a wonderful man and we have 2 cats as our children. (I didn’t want to take the risk.) I have a Master’s Degree in Chemistry and Life Science and I work as an Adjunct Professor at a local community college. I hope someday to teach while sitting on my sofa in my jammies. I love to learn, particularly human anatomy and physiology, psychology, cell biology and genetics. I tend to be rather nerdy. I love to drive and travel. I am learning to love to exercise. I love to drink hot mint tea and I think afternoon naps should be a requirement. Life is good!!!! The LORD has blessed me beyond my wildest dreams.
My motto: Tricuspid atresia has shaped my life, but I refuse to let it define me!!!
Contact Information for Kathy: kjware@shentel.net
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Cort, 37
CHD: TA, TR (3 open heart surgeries & pacemaker, 1977, March 1987, January 6, 2003 ... hernia repairs ... etc.)
-Hobbies, goals, things you've done that your proud of, etc just brag about yourself in about a 4-5sentences
...writing,
...taking pictures,
...road tripping,
...driving my family of cars,
...hosting radio shows when able,
...collecting (models, HO scale train, legos, etc.),
...baseball
...misc
I'm not exactly sure I'd call them goals, per se, but I completed college (4 years). And, this summer (June/July 2011), I will complete my travels of the different sections of the continuous 48 states. I can link you to my road trip info, if you want. Another goal I've accomplished ... owning one of each generation of the Monte Carlo. I have a 1972 for the first gen (1970-72), a 1976 for the 2nd gen (1973-77), a 1979 for the 3rd gen (1978-80) and a 1981 and 1987 for the 4th gen (1981-88).
As far as advice ... relax and have fun with your children. Enjoy them as much as possible, while watching out for them ... and letting them be them. And, where appropriate, discuss their CHDs.....
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Jan, 43
CHDs: ASD, VSD, PDA, Tricuspid Atresia, Pulmonary Hypertention... NO Surgeries!
I was born in 1968 with ASD, VSD, PDA, TA and PH. Although my parents were told that I would not live past a year, and that I would never hit the milestones any "normal" child would hit. Not only did I hit all the major milestones I surpassed them. I lived and thrived. I went to school and graduated.. I got a job, I learned to drive.. I do almost all the same things any other "normal" person can do. Sure I have my limitations.. I will never run a marathon or climb a mountain but that has not stopped me from doing the things I wanted to do. I have never had any surgeries or repairs.
My hobbies are reading, writing, jigsaw puzzles, spending time online. I started chatting with parents of children with CHD's back in 2004 and in 2007 I became Membership Director for HypoplasticRightHearts.org. A job that I truly love and enjoy doing. I am currently trying to get more involved in "off"line support groups as well, again working mostly with parents who have children with CHD's.
What I want to let CHD parents know, tips, etc: When I was born the drs. didn't know anything about CHD's and there was no internet so my parent's information was limited. This made my mother a "helicopter mom". Always trying to prtect me and never letting me do things by myself. My parents were told not to let me do to much physical activity as it would wear me out quickly and make me sick... We know so much more in 2011 than we did in 1968. I can't imagine how hard it is to be a parent but I can tell you how hard it is to grow up with a "helicopter mom". I used to tell my mother she didn't mother me she smothered me. I know she only had my well being in mind, and she did the very best she could with the information she had... but please...try to resist being one of those parents. We are smart kids and we need to figure out our own limitations. We will learn when to slow down and when to rest. Sure we will test those limitations every chance we get, but you need to let us otherwise we will never know what we can and can not do. We will all get scrapes and scratches.. broken bones and coughs and colds.. It won't be the end of the world if we do.
Contact Information for Jan: J.E.Pelrine@gmail.com
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Rita, 45
CHD single ventricle tricuspid atresia heart is 3times enlarged and have been diagnosed with Eisenmengers syndrome 4 yrs ago. (Surgery: Hanlan-blaylock, pulmanary shunt 1969, multiple cardiac caths, cardiac ablation twice)
I take quite a few meds but it doesnt really bother me b/c I have taken meds all my life.. I am pround of the heart GOD has given I feel that I have been specially chosen to take care of this heart and I do my best to do so . I am most pround of who I am and the woman I have become of my faith and my family they have strenghened me my whole life. I have never really been the kind of person not to do things I do what I like and if for some reason I cant accomplish the task then I work at it and make sure I get it done NO ONE better tell me I CANT b/c I'll die tring and show them I CAN!!! I am very independant. My family has alot to do with that my siblings always treated me like a little sister should be lol.. they teased me ,scared me ( even when dr's told them they shouldnt) but I was ok I am tuff!!! I am number 5 out of 6 kids I have an older sister 3 older brothers and 1 younger brother... my parents allowed me to do alot of different things driving, working, going away to camp with church, I had a great childhood and teen yrs.
Parents plz allow your children to do what they believe they can manage b/c they will learn themsleves what their bodies will let them accomplish and if they cant do it now they can grow into it and do it at a later time juwt give them encouragement and most of all LOVE>> you were chosen by GOD to care for these little angels.. plz remember to tell your children to talk to their hearts and to let you know how they feel b/c only they know b/c they live in their bodies not you.
I enjoy crafting , sewing, and walking my little dog SAMSON I do alot of sewing for children and my sister and mother and I have a little business so that is what I do now but I did go to college and I used to be RMA ( did my trianing at Valley Childrens Hospital Fresno with my own Pediatric Cardiologist which was a blast ) Phelbotomist, Med Tech, and trained as a Pediatric Nurse which I enjoyed very much but at the age of 23 yrs old I became to ill to sustained a 40 hrs work week and dr's suggested that I become dieabled so I have been disabled for the last 21 yrs .
Now I dedicate myself to my husband and my home and my step-children & grand children; since I never had children of my own dr's didnt think it would be a good idea for me b/c the size of my heart and the under-development of my lungs.
There is so much more I can say about me but just remember this I love ME b/c my heart and ME are one and GOD made ME just the way I like ME!!!! I am CHD
Contact Information for Rita:feel free to contact me at ritzy1966@hotmail.com if you have any questions thanks for your time and GOD BLESS!!
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Pam, 50
CHD: Tricuspid Atresia, ASD & VSD. Later, I was also diagnosed with Eisenmenger's Syndrome.... NO Surgeries!
I was born on Jan. 1, 1961. Six months after my birth, while my mother was feeding me, she noticed that as she held me, my heartbeat was irregular & was beating quite fast. She made an appt. with my pediatrician & when Mom & Dad took me for that appt. the suspicion was raised that something was wrong with my heart. My parents took me to MCV (Medical College of VA) & I was tested & found out that I had Tricuspid Atresia, ASD & VSD. Later, I was also diagnosed with Eisenmenger's Syndrome. They were given the option of heart surgery which was a 50/50 chance of survival or leave me alone & trust in God. They decided not to elect for surgery & put my life in God's hands. God has been good....I turned 50 years old a few weeks ago!!
I had a great childhood & had my limitations during PE classes & other activities. I had many friends & lived a pretty normal life. I adjusted my life to fit my heart defect. I was married 17 years. We adopted a son but sadly that marriage ended. I was fortunate to meet the most wonderful man & we've been married almost 11 years!!!
I love to read, scrapbooking, photography, travel & love my wonderful family. I have flown to Hawaii & went on a cruise, went to the Bahama's, Puerto Rico & a few other islands.
To parents: CHD isn't the end of the world. You're child will know their limits & please do not hold them back from their dreams. Let them follow their dreams but always be there if they fall. Let them know they are special & it is okay to be a little different. Keep good medical records.
Contact Information for Pam: If you have any questions, I am on Facebook under Pam Kendall Determan or pkdeterman@msn.com
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