Frustrated & losing hope.

A place for GUCH Patients and their families to exchange experiences and gain support. So please feel free to ask any questions you may have.

Moderators: Moderator6, Moderator2, Moderator5, Moderator1, Moderator3

Frustrated & losing hope.

Postby Dani08 » Thu Aug 28, 2014 8:02 am

Hi, I'm new to this message board, I'm 31 and live in Australia and sorry in advance for my life story. :oops:
I was never really told the technical names for what is wrong with me so I will just tell you what I know. I was born with the left two chambers of my heart only, the doctors didn't think I would make it and told my mother I would be dead in 3 days. When that didn't happen at 11 months old they decided to put a shunt in between my heart and lungs, and then at age 5 I had a Fontan repair. Everything had been going fairly well for me except usual hospital trips.

I had my appendix out in 2005 and as far as I'm concerned the doctors did something wrong, my problems started there. They left me in the emergency room for at least 14 hours in pain, until my appendix perforated and then they finally operated, but ever since then my stomach has never been right. I found out I had two brain aneurysms in 2008 and had to have surgery to coil them.

After that things seemed to calm down for a while but last year things started to get worse. One night my heart started beating super fast, I thought it would go away, but the next morning it was still there, so I took myself to hospital and found out my heart was in AF. They tried drugs to slow it down, but ended up cardio verting me, which was fine as it stabilized after that. Then I had this unusual cough for 3 months and my legs were swelling everyday, my GP said it would go away but when it didn't I sought a second opinion. We found out that most of my lungs were full of fluid (hence the coughing) and the AF had come back. I was put onto diuretics immediately, but eventually I ended up in hospital, where they told me my heart wasn't working as effectively as it used to, I was in there for two weeks, put on to a myriad of drugs and ended up losing 20 kilos of fluid. The AF drug Sotalol that they put me on wasn't working, so they ended up switching to a harsher drug amiodarone, which I hated as I got really bad side effects and it didn't help either. They decided that they would insert a pacemaker and told me that it would help me immensely as by this time I was always really breathless and couldn't do much (I had to quit my job). They scheduled the operation, but before the appointment I ended up in a coma for a week, hospital for two weeks. The doctors are still not sure why, I believe it was all the drugs I was on, because while I was in the coma they took me off all drugs and my heart was the best it had been all year. Anyway, they did the pacemaker operation, but by that time my heart had gone back into AF, which was not good. The hospital screwed me around for like 5 months before they cardio verted me again. Now before they did this, yes my heart was out of rhythm, but I had no fluid build up and while still tired all the time, was ok. After they did last month, I have been getting massive fluid build up again, am just as tired as I was before and my heart keeps going in and out of AF again.

I have always handled my medical problems fairly well, but ever since all this started happening, I just keep losing hope and am at the end of my rope. I'm so frustrated and am getting depressed that I will never go back to the way I was. I feel like I can't do anything anymore and I hate having to keep searching for a way to fix it, it seems like I am going to be this way for the rest of my life. My family has always been a great support, but I feel like they have no clue what I'm going through and even though they constantly say it will be alright it will get better...they don't know that. So I know this is a massive post and I am sorry, but I would like to know if anyone has gone through anything similar, and if there is a light at the end of the tunnel. Thanks for having a place I can vent and for any help I get.
Never really told technical terms of CHD.
Born with only left 2 chambers of heart, had shunt put in at 11months old, Fontan repair when I was 5.
Have a leaking valve. Had two brain aneurysms coiled in 2008/09. AF started 2013, pacemaker inserted 2014.
Posts: 1
Joined: Thu Aug 28, 2014 7:22 am
Location: Sunehine Coast, QLD, Australia

Re: Frustrated & losing hope.

Postby mysteryman » Thu Sep 11, 2014 10:24 am

Have sent you PM.
Tricuspid Atresia (ASD, VSD)
Glenn Procedure
Fontan Procedure
SVT, AF, Flutter
Liver Cirrhosis
Posts: 48
Joined: Fri Aug 01, 2008 10:57 pm

Return to General Discussion Group

Who is online

Users browsing this forum: No registered users and 1 guest