Update on my health

Just a quick update guys and not a good one I’m afraid.

Transplant is a no go. I have too many issues and the chances of survival to transplant and recovery is only rated at 10% and they do not want to list me with those chances.

There’s no more they can do for me and I’m now officially terminally ill. Their focus will be on keeping me as comfortable as possible now. It’s hard for them to give a timescale, but they believe it will probably be under a year before I go to the big Overclockers forum in the sky. They also want me to think about signing a DNR form and switching off my ICD so it won’t save me.

In a bit of a daze atm, but I’m a positive person so I’m sure I’ll muddle through somehow. On a more positive note, I’ve been given free reign to do whatever I want to do now. So no more feeling guilty about having one too many beers lol :D

I may post more in due course about how things are going. I’ll make a point of being active on the forum every day, so if I suddenly disappear for a week or so, you’ll know that it’s all over. Thanks. Love you all.
 
For what it's worth, that made me properly lol! Shame otherwise we'd have a whip round for champagne and "complimentary therapy" services!

Sorry if I missed it but are you having to shield given the Bat AIDS situation? I just hope whatever is going on that you find a way to get some enjoyment after that news buddy.
Yes I’m shielding. Covid would definitely kill me off.
 
Sorry to hear that. I’m not sure what else there is to say to be honest. I’ve got no idea how one would process that or even begin to deal with it
What else do I do? Shrivel up and die?

I was born with this. My entire life from the first hour has been one long war with many battles along the way. Heart surgeries, spinal surgeries, arrhythmias, strokes. Everyone has been a battle that I’ve had to face and win, and I did.

I always knew it was likely that I’d lose this war eventually, but in my mind this is the final battle. I will not win it, but I will fight to the very last with everything I have.

I refuse to shrivel up and die. I will keep fighting and making the best of however long it takes. We’re only here once, some longer than others, but everyone has to play the hand they’ve been dealt and fight to enjoy every last second of the miracle life they’ve been given. There are no second chances.
 
Thanks for your concern guys, sorry I haven’t updated this thread in a while. Don’t worry about what Chinchilla says. I took it as a joke and nothing else. We joke like a lot at home too. Very black humour my lot has. I use it as an excuse anyway for things like getting the last roast potato or piece of KFC. I think they’re starting to get wise to it now.

At the beginning of 2021, I ended up back in hospital for a few days as I was suffering badly from ascites and pulmonary oedema. My belly was swollen with water so I couldn’t eat properly but was still putting weight on with the water. At one point I had just under 5Kg of fluid in my abdominal cavity. Not pleasant at all. At night the water filled my lungs and I was waking up gasping like I was drowning (which I effectively was). I ended up trying to sleep sitting up every night. In hospital, I was loaded again with lots of furosemide to get it all out. I was sent home on a higher dose of meds and it’s all been very well controlled since. The first night of being able to lie flat in my own bed and breath easily was bliss. One of those things you take for granted.

The doctors are very happy with my progress. My blood tests are showing that my body is coping well and adjusting to the situation. Only minor drawback is that I am now prediabetic.

I have difficulty moving about a lot and constantly feel weak and off balance when standing or sitting up, but the docs think this is something that can be helped. They’ve told me that my long inactivity has led to a loss of core strength. Which is what people need to feel normal and balanced, and I have lost a lot of muscle mass in my legs and lower back. My aim for the new year is to try and get that back. I am being supplied an NHS physio to help me. I’ll set myself little targets at a time and see how far I can get.

I still haven’t signed a DNR form, I just can’t bring myself too, and since it became clear I was lasting longer than they expected, they have now stopped asking.

I’m just going along as best as I can. Eating a lot better now and actually putting on a bit of timber, which is a good sign. Still enjoying my beers and watching football and arguing with people on here. And of course, I have my 3080 which OCUK very kindly made sure I got last year.

I know I will take a turn for the worse one day soon enough, but until then, I’ll keep positive and do what I can to prolong whatever time I have left. Thanks all and happy Christmas!
 
What’s the latest @robfosters? You’ve made it through another year. You’ll outlast me at this rate ;)
Not great atm I’m afraid. I’m now developing bad gastro problems due to cirrhosis and am finding it hard to eat enough calories. I also have cachexia which is causing muscle wastage and weight loss. I’m finding it very difficult to walk unaided.

I’ll be very surprised if I see the year out tbh, but I’m at the point now where I don’t really care now. Whatever happens, happens. But I’m still at home with family and all my creature comforts, so in general my mood is still good and the hospital have promised me they will do everything they can to allow me to stay at home.

I've just got to get on with it really, nothing can be changed, what’s done is done.

Thanks for asking mate, all the best to you.
 
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