Update on my health

robfosters

robfosters

robfosters

Caporegime
Joined
1 Dec 2010
Posts
53,697
Location
Welling, London
As many of you know, I’ve been battling a congenital heart condition my entire life. Well, things have moved on dramatically, so I thought I’d give you an update.

Last March, I went into a slow form of atrial tachycardia. An echo showed that due to weakening heart function, I had developed a clot in my right atrium, roughly the size of a pea. I was placed on heparin to reduce it. but had to stop taking it after severe nose bleeds. This meant they couldn’t put me back into sinus rhythm as the shock given to my heart could blow the clot out, causing massive stroke or embolism. Over time my condition has deteriorated, and I returned to the hospital yesterday. The clot has grown to the size of a grape and is starting to interfere slightly with blood flow through the heart which is making me feel worse. They are out of options though and cannot get rid of the clot without risking a stroke or embolism, both of which would probably kill me in my current state. The only way out is a transplant, which they have talked about for years, but I’ve never been ill enough to go on the list.

The Freeman hospital in Newcastle are aware of me and have asked for full liver works to be done as my liver is damaged from the years of poor circulation, and they need to make sure it is working well enough to withstand the strain on it after transplant. I will be having CT scans and other investigations soon, both at my regular hospital in London and the Freeman (not looking forward to the journeys coming up!). Hopefully, all will be OK and I will be placed on the list. If not, then my last hope is gone and I go on to palliative care to make me as comfortable as possible for the time I have left.

Also, my ICD, which protects against cardiac arrest is nearly out of battery, so I need another operation to replace that.

It’s a very scary time and I am honestly ******** myself, but I just have to smile and get on with things the best I can. I’m still feeling OK in myself when resting but am struggling to walk more than 20 yards now without breathlessness and a racing heart. The ticker has just done as much as it can, there’s no more left.

I’ll update this thread when there are further developments. It’s good for me to talk to people on here as I don’t get out much in my current state as you can imagine, so opportunities for talk are limited. Thanks for listening :)
 
Worthy said:
Really sorry to hear about this, I didn't know you suffered from health issues. Forgive my ignorance on the subject, but isn't there an operation available to remove the clot if they know where it is?

Wishing you all the best.
Click to expand...
Not in my case no. There are operations, but they are just too dangerous to perform on me in my current state, and even if they got rid of the clot, another one would likely form before too long.
 
dowie said:
So sorry to hear this. :( Best of luck mate - hope you can stay positive, hope the liver test comes back in your favour and you're eligible for a transplant :)



Presumably the arrhythmia likely persisting or coming back is part of the issue there, new clot would just reappear anyway. I had an atrial arrhythmia myself (AF in my case) after being under a load of stress and the first thing they did was give me an injection of an anticoagulant to prevent a clot, fortunately they were able to get me back into normal rhythm fairly quickly - that is the important thing as far as these things are concerned, I was told the longer you're in that state for the more likely it is to reoccur or persist - the short circuits the electrical impulses are taking become more and more permanent over time... chances of it persisting increase with age too.

Lots of old people live with a permanent arrhythmia that can't be treated, that can be fine, they just have to take anticoagulant meds permanently to prevent clots, rather unfortunate for the OP that he's not able to with the nose bleeds etc.. :(
Click to expand...

You’re on the right track. Problem with me is my right atria is very enlarged due to the hard work it’s had to do over the years. This has caused a lot of scar tissue to form on the heart, which is the biggest cause of those short circuits you talk of. I’ve had three ablations to try and help, but it just reoccurs constantly and will continue to do so. A clot would like reform anyway as the flow through my heart is so sluggish that the blood just pools in the right atrium, eventually clotting. I’m on warfarin. This is slowing the growth of the clot somewhat but no completely. They have told me that if it becomes a medical emergency and it’s obvious I won’t survive, then they will have to do something about it, but due to the funky way my hearts plumbed in, its very difficult and risky surgery.
 
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.
Click to expand...
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.
 
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.
Click to expand...
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.
 
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.
 
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.
Click to expand...
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.
 
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.
Click to expand...
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.
 
DampDog said:
How old are you, if you didn't mind me asking.

Yeah, I know what you mean about the tablets . I line em up with breakfast, lunch and bedtime.

That's a life changing defect. To be honest I've never heard of anything that severe.
Click to expand...
I’m 38. Had the original operation to keep me alive when I was 7. But it was always only a palliative operation that would fail one day. At least it gave me a really good childhood and young adulthood.
 
Another quick update. Procedure to have my ICD replaced has been postponed again!

Anaesthetists have said it’s too dangerous for me to have general anaesthetic unless I have the heavy duty life support gear which they just cannot do for a simple procedure. I now have to have it done under heavy sedation with a nerve block (whatever that is). I suppose it’s good that I’m having it done in a safer way, but I just don’t fancy being awake while being cut through to the ribs :(
 
DampDog said:
Good to hear they are prepared to do it though. It doesn't sound like I have the same device but I had my CRT-D implanted under a local with sedation. The procedure took around 2.5 hours yet I can only remember about 10mins of it right at the end when they were stitching me up. Apparently they were chatting to me all the way through but I remember nowt. (where is your device placed?)
Click to expand...
Left side of rib cage just under the armpit.
 
In hospital now. ICD all done and dusted, went very well, didn’t feel or notice a thing. Just a bit of propofol did the trick.

Getting a bit sore now the nerve blocks wearing off, but got some IV paracetamol to take the edge off. Just trying to relax and watch the football. Home tomorrow.
 
Over a week since the op now. Still in quite a bit of pain, but settling down. Still feels quite swollen but I’d imagine that’s normal when your muscles have been cut right through.

The spoils of victory lol

BP9AtRCl.jpg
 
Well I’m back from my transplant assessment. 3 days of test and talks. I feel pretty drained.

I won’t get an answer about my eligibility for a little while, but it looks as though I need a heart and liver transplant. I also would have to stay in hospital, up in newcastle, until a donor becomes available, which on average is over a year. Pretty harrowing stuff and a big decision to make as it will affect my family in a major way.

I’ll let you guys know when I get a decision.
 
Thought I’d address some of the points raised in the very kind replies.

My family is my mum and brother. Both have jobs they cannot give up, so moving north permanently is out of the question.

Hospitals nearer me do heart transplants, but the Freeman is the specialist hospital in the UK for transplanting patients with congenital heart disease, and the only hospital to have done a combined heart and liver on patients with the same condition as myself. They have done 2 so far, and both are alive and well and back in full time employment. Indeed, the first guy had around a week left to live when the organs came through. He’s not only back at work, but 6 months after leaving hospital, completed the Great North Run too.

The reason I would have to stay in hospital is nothing to do with being close if an organ becomes available. The hospital has many options for transport open to them for transplant patients, including air ambulances.

The reason is that there two lists for transplant, a routine list and a priority list. Your condition depends on which one you are on. Routine patients can stay at home, but priority patients have to remain in hospital until an organ becomes available.

Also. Being in hospital allows the docs to administer inotropes, which are IV medications that support and enhance cardiac function, keeping you alive and feeling as well as possible for longer.

I have to see what the final result is, but it could be without doubt the biggest decision I’ll ever have to make in life!

What would you do?
 
You must log in or register to reply here.
Back
Top Bottom