Hi, I need some advice… I’m 36 years old, I have congenital heart disease – truncus arteriosus – type 4. I have never had surgery or some repairs, actually I have never been in hospital till now (thanks God!) BUT all my life I tire a lot very quick, cannot walk more, must rest, no any physical activity, I have never worked, even I have never had any home work… Just take pills for heart rhytm. Well, in some way I was resigned to live like that… BUT now the secondary pulmonary hypertension (that I had from before because of the heart illness) starting get worse I think. I tire more, even from walking 20 metres, must rest, but have feeling like somebody hit my chest and cannot breath… Before I tired, but didn’t had so much problem with taking breath… Now my haemoglobin is more high, I feel weak most of the time. So my question is – would you advice me to put myself to transplant journey (would be double lung/ heart transplant), or to try new pills or some other solution if is possibly, or continue live like that? I’m from Bulgaria, here not such transplants, so maybe would be in Austria, and my worries are that all will be very expensive, about complications or rejections, and later how I’ll care for myself when the team will be in other country (here we don’t have so much doctors about transplant patients, and usually they give you the pills that cost less, no mater if they will be effective for you and they just don’t care so much…), and noone who can make screening because of high risk of cancer or other complications… Most of people here tell me to don’t do transplant… but sometimes I ask myself – how long can continue like that (actually my mother think that if I lived till now like that, can continue at same way :D ). Here if you don’t press doctors, they will not put you on transplant list… So I don’t know if to press them, or stay things like that… In other side- I fear that later can get worse or to be late for it, as the waiting is more (because you must wait for other country and always will be like reserve…). Sorry for the long post and if I made mistakes (my English isnt very good). P.S. I know that transplant isnt a cure, so is it worth...
Posted on: Sat, 24 Jan 2015 13:28:09 +0000
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