Congenital Heart Disease Support Group

I do not have a cardiomyopathy specialist any more. When my doc left for Cleveland, He told me my long term prognosis was poor. Was told I would get a rare form of heart failure.
I`m not realy sure what he ment, This was around 10 years ago. Now I`m much older and have not been feeling well off and on for several months. I can`t sleep, can not breath well and confussion is about ready to put me into a nut house. No HCM specialist around me I can find. This doc told me that my doc`s probably would not notice my type of HF. What is rare heart failure ?

I will answer this one myself. In 2005 Diastolic dysfunction was added to the list of heartfailure. It is Functional or Nonfunctional, It has the same symptoms of Left side HF.
At the time I typed my first post, I was making a transition to nonfunctional. First thing doc done was to try to start my Dual chamber pace maker, It failed because muscle is to thick. Had a heart cath soon after to reposition the leads for pacer, This failed also. Do to Diastolic dysfunction and HCM I have lost movement in the bottom of my heart (Apex).
My Doc started me on 25 mg Metropolo, I went on strickt diet no salt, 2 liters of fluid a day and I adjusted my exersices slowly. The worst of this was in Dec-Febuary, Sticking to this has made me feel alot better. Matter of fact better than I thought I would ever be again.
To any younger HCM`ers who have to go down my path. Do not let the words Heart Failure scare you. This is the tuff part keeping hydrated on a 2 liter fluid diet in the summer, To avoid arrytmias you have to stay hydrated.

I was born with a very complex congentital problem drs gave me little time to live but through researach and new developememts in the early 80's I was one of the first children operated on. I am now 30 and have a child of my own!

my brother has just passed away on 24/4/08 . he had a congenital transposition of the main vessels of the heart since birth,he was never operated on because the doctors told my parents that it was so complicated they didn't really want to touch him. He led a relatively normal life ,although he couldn't get mortgages,decent jobs etc because of the high risk insurance wise. This was his biggest gripe in life ,because you couldn't see his condition , people disbelieved him . His health only really started to deteriorate in the last few years , he developed asthma ,tacycardia and struggled up untill he caught a chest infection which wouldn't clear with antibiotics and he ended up with pneumonia .His heart couldn't take the strain and stopped, the doctors battled for 20 mins to resusitate him but couldn't. he was 34 and had only just been referred for talks about corrective surgery in london. As a family we are only just coping with the grief but most of all wondering if the surgery would have saved his life.I would like to say to anyone with chd's please don't take it lightly , if you want to know anything about your condition , push for answers and don't stop fighting for your rights , my brother fought until he became tired of it .He knew more about his condition than anyone i think.thanks for listening fiona (leicestershire uk)

I'm 31 and was born with Trcuspid Atresia. I've had 6 open heart surgeries to replace my artificial valve. I've had my years that I do great, and I've had my years that I'm ok. Overall I am greatful I'm here. I'm living proof that CHD patients can make it!!

when I was 6 ...I had heart surgery for a PDA...last year...I found out that I have EA..which only affects about 1 in 200,000 births...mine is a mild case...I am doing fine....almost 50 now....the EA wont have to be surgically corrected unless the valve starts leaking more...

At 6 weeks of age diagnosed with Scimitar or Liebow syndrome consisting of dextroposition of the heart, sequestration of the lower lobe of the right lung and anomalous arterial and venous supply to the sequestered lung. Left-to-right shunt (at atrial level) and in considerable heart failure.

Treatment at that time was a resection of the sesequestered lobe of the right lung.

After this treatment I was taking Digoxin 0.6 daily till age 5. At age 6 I was playing competitive ice hockey. And today I am the proud father of a very healthy 3 year old son.

Jeff

I have been witness to some incredible stories about congenital heart defects in the past month. My granddaughter was born a t U of M Motts Children's Hospital and went through the first stage HLHS surgery at 5 days old. It's rough, but she is starting to act like a normal newborn. A lot of these kids, Kylie included will be delayed until their cardiac output is improved and their general health is better but... Does anyone have any more info. Kylie looks incredibly good almost 5 weeks post surgery

I have been witness to some incredible stories about congenital heart defects in the past month. My granddaughter was born a t U of M Motts Children's Hospital and went through the first stage HLHS surgery at 5 days old. It's rough, but she is starting to act like a normal newborn. A lot of these kids, Kylie included will be delayed until their cardiac output is improved and their general health is better but... Does anyone have any more info. Kylie looks incredibly good almost 5 weeks post surgery