Update on my health

Good luck, i couldn't imagine what it must be like in your position. If there's one thing to take from all of this everyone is enjoy your health while you have it ! also put yourself as a donor.. You never know what may happen one day, and well you'll be gone (hopefully not anytime soon mind) and in no need of any of it ! so may as well do something useful with your organs. If everyone became a donor, it would really help.
 
Indeed, I hope threads like this remind people just how important organ donation is and get them actually registering as it’s something that many people mean to do and just forget about.

I know I’m obviously biased, but we need the opt out system in England.
 
rebel rebel said:
Yes I think so, it's called Max's Law. I'm waiting for a kidney so will hopefully benefit from the change.
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Wow, I didn’t know that. Well all the best to you and hopefully we both benefit.

I’ve had to have my kidneys checked as well as you need good renal function for transplant. It’s quite amazing how many variables go into determining whether or not you’re suitable for transplant.
 
robfosters said:
Wow, I didn’t know that. Well all the best to you and hopefully we both benefit.

I’ve had to have my kidneys checked as well as you need good renal function for transplant. It’s quite amazing how many variables go into determining whether or not you’re suitable for transplant.
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Thanks mate! Yes here's hoping.

Its interesting you say that, I had to have my heart checked to make sure it would get through surgery.
 
rebel rebel said:
Thanks mate! Yes here's hoping.

Its interesting you say that, I had to have my heart checked to make sure it would get through surgery.
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It just seems like that there’s such a major strain on the body when an organ is changed that the whole body has to be up for it otherwise it’s just not gonna work.

Many of the heart transplant patients who die after surgery, die because of the liver function. Nothing to do with the transplanted heart, but the liver can’t take the strain of all the immunosuppressant drugs.
 
Blimey, all we see on these forums is a name, yet, behind that name can be a whole load of tribulations.

I really hope that you will get the help etc you need robfosters. You have my thoughts and best wishes.
 
robfosters said:
It just seems like that there’s such a major strain on the body when an organ is changed that the whole body has to be up for it otherwise it’s just not gonna work.

Many of the heart transplant patients who die after surgery, die because of the liver function. Nothing to do with the transplanted heart, but the liver can’t take the strain of all the immunosuppressant drugs.
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Yep everything is connected somehow. Luckily the Doctors are well on top of things. I tend to let them get on with it, I don't always want to hear the details. I find that helps to keep my stress levels down.
 
So I had my CT scan today to see if my liver is healthy enough to withstand a heart transplant. Needed the contrast dye via IV, but the first cannula hit a nerve, which was bloody painful. Second one went in ok though. Bit of a weird feeling when the dye goes in. Thought I’d ****** myself lol. Now I have a keep everything crossed nervous wait for the results.

Also had a preassessment for my ICD change which I will be having on 12 March.
 
Here's hoping the numbers are all in your favour.

Unfortunately I'm walking much the same path. I had a serious heart attack way back in 1998, which necessitated a triple-bypass. Apart from damaging the heart muscle it also screwed with my hearts conduction so I became bradycardic, pretty much overnight. I developed ischaemic cardiomyopathy and my ejection fraction fell away to 33%. Jump forwards to 2012/13 and I had two more small heart attacks in quick succession. That screwed up my conduction even more and left me with LBBB (left bundle branch block) and a irregular heart rhythm. Likewise in 2016 they stuck in a CRT-D to fix the bradycardia and dodgy rhythm. Unfortunately that didn't go to plan and it left me with a serious infection and severe runs of VT. July of last year I had an ablation to try and fix the VT's but that hasn't worked so I'm being assess for a second one at the moment. Meanwhile my ejection fraction has fallen away to 27.5% so I'm knocking on the door of severe heart failure too.

Sorry, all a bit long winded, but just wanted to share and let you know you're not walking the path alone, and know a least some of what you're going through, and my thoughts are with you. My path leads in the same direction. Some of the anti-arrythmetic drugs are pretty toxic and as you say, are tough on the liver.
 
DampDog said:
Here's hoping the numbers are all in your favour.

Unfortunately I'm walking much the same path. I had a serious heart attack way back in 1998, which necessitated a triple-bypass. Apart from damaging the heart muscle it also screwed with my hearts conduction so I became bradycardic, pretty much overnight. I developed ischaemic cardiomyopathy and my ejection fraction fell away to 33%. Jump forwards to 2012/13 and I had two more small heart attacks in quick succession. That screwed up my conduction even more and left me with LBBB (left bundle branch block) and a irregular heart rhythm. Likewise in 2016 they stuck in a CRT-D to fix the bradycardia and dodgy rhythm. Unfortunately that didn't go to plan and it left me with a serious infection and severe runs of VT. July of last year I had an ablation to try and fix the VT's but that hasn't worked so I'm being assess for a second one at the moment. Meanwhile my ejection fraction has fallen away to 27.5% so I'm knocking on the door of severe heart failure too.

Sorry, all a bit long winded, but just wanted to share and let you know you're not walking the path alone, and know a least some of what you're going through, and my thoughts are with you. My path leads in the same direction. Some of the anti-arrythmetic drugs are pretty toxic and as you say, are tough on the liver.
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Really sorry to hear that and I hope everything goes well for both of us. I’ve had one VT before and it was the only time I genuinely felt like I was dying. Absolutely awful.

My ejection fraction has sunk to around 15% or so now. I’m between stage 3 and 4 on the NYHA scale.
 
robfosters said:
Really sorry to hear that and I hope everything goes well for both of us. I’ve had one VT before and it was the only time I genuinely felt like I was dying. Absolutely awful.

My ejection fraction has sunk to around 15% or so now. I’m between stage 3 and 4 on the NYHA scale.
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3/4 NYHA is tough going, I feel for you. VT, can be scary. But they optimised my CRT-D much better about a month back, so up to now it jumps on the runs pretty quickly now. Plus they stuck me on Mexilitine.
I would imagine that you're like me and take so many meds you rattle when you walk.
 
DampDog said:
3/4 NYHA is tough going, I feel for you. VT, can be scary. But they optimised my CRT-D much better about a month back, so up to now it jumps on the runs pretty quickly now. Plus they stuck me on Mexilitine.
I would imagine that you're like me and take so many meds you rattle when you walk.
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Yeah, about 20 tablets a day. Bit of a rigmarole tbh.

Those CRT-D’s are good, but I can’t have one as I only have one ventricle. The wall never formed to create a left and right one.
 
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