Congenital heart defects

Hi I have only very recently joined this pacemaker club website. And in all honesty I really just stumbled across it (no offence to anyone) but anyway my only question is will I have to live with a pacemaker for my whole life or will I get a replacement heart?

Just to let you know I was born with a congenital heart defect and I had a hole in my heart and I hadon't some of the arteries (I think) in the wrong areas and sending blood to the wrong areas which meant I turned blue. Since then I've had 3 operations and my last one was around 9 years ago and with the last one I had a pacemaker inplanted I'm me. I'm now 17 so will turn 18 next year and I am getting referred to the adults hospital where they're talking of putting a new pacemaker in me. I'm happy to have a pacemaker in me cos I've lived with one all my life and have never had a problem with it but I was wondering, (not expecting doctors to respond mind you but I don't mind) wouldn't it be better for me to have a new heart? Or just have a more up to date pacemaker? Or a fake/real heart with a pacemaker to help?

In advance thankyou to anyone who replies and sorry if i dont reply immediately because I may forget. ( I looked up my heart problem and found out impaired memory was a development problem)

3 Comments

pacing

by Tracey_E - 2016-11-10 07:39:40

If pacing fixes what's wrong, they wouldn't even consider us for a transplant list. If some day the heart stops responding and other treatments don't work, then it's possible to end up on the transplant list. Transplant is always a very last resort due to risk of rejection and long term complications. 

We get a newer more up to date pacemaker every time we have a replacement. They don't just replace the battery, it's one sealed unit so we get the latest and greatest. I just got my 5th earlier this year and it has some nice features my old one did not, which I am loving at the gym. My stamina is better now. 

Adult Congenital Heart Association

by Good Dog - 2016-11-10 08:15:09

Here is a great organization that Tracey brought to light about a week ago.I think that they can provide the resources you need for specific information on your congenital problem. I think that they can provide all of the information and answer all of the questions you have:

https://www.achaheart.org/

No it would not be better

by Pacemum - 2016-11-10 19:50:43

Things to think about

Are you on any medication with your pacemaker?

Heart transplant patients have to take a huge amount of anti rejection drugs daily.

A heart transplant is a treatment not a cure.

Not all listed those patients listed get a transplant.

The demand for all transplant organs is higher than those offered for transplant.

No reputable medical person will list anyone for transplant if there are other alternatives.

Then ask yourself if it is better to be paced for life or transplant.  

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