Tuesday, May 8, 2012

Pacemaker/Heart Transplant

Ridiculously pissed off! They wont change the damn pacemaker yet! I legit cried in front of them and it triggered an arrhythmia, but nope! They won't change it because it's not in the "safe mode" meaning I won't drop dead due it failing. but I am beyond upset. My current quality of life is CRAP! I can hardly leave my house anymore. If the simple act of crying causes A-Fib, you can imagine what actual exercise would do. but anyway, they say it has "1-5 months" so I'm stuck like this until PROBABLY August. Which infuriates me. But we are going to speak with my cardiologist to see if she can talk them into doing it, because the main problem right now is the Atrial wire. It's pretty much fried, and I've been having a FUCK ton of A-Fib.

My mom is at the point where she's ready to take me back to New York Presbyterian. I'm honestly gonna start a petition, not just for me, but for anyone with a pacemaker. It's not all about how it looks on paper but how I FEEL! Quality of life! Its absurd! Perhaps in old people they dont notice the lack of energy as much because well...they're old, and things have slowed down for them a bit anyway. But in young people, it makes a HUGE difference!

 While my mom was at a conference in New Orleans last week, she met with & had lunch with 2 DOCTORS. not lay people. but DOCTORS. She was telling them about whats going on with my pacemaker. One of the doctors asked her, "why don't they just do a heart transplant?". My mom was pretty much speechless.

 (If you are a lay person, and don't understand the reasoning, I shall explain: if I had a pacemaker & ICD and was still not doing well THEN they would resort to transplant. But as of now I don't even have an ICD. And for the most part.(except for when my battery / wire are fried.) I do Okay. (not including lung probs) To do a heart transplant would mean I'd be in for a lifetime of anti-rejection medication, I would never be able to have kids (due to these meds) would probably need another one about every 10 years. Chances are I would be dead by 40. at this rate I can live until 64. (although this is speaking strictly cardiac, and given my lungs & other events that may come into play, 64 is highly unlikely)

 anyway, theres the update.

1 comment:

Redspect said...

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