Update on my health

dirtychinchilla said:
Sounds awful mate, hope it works out for you.

Reflecting on some of the posts here, wouldn't it be better for you to move up there and live nearby instead of living in the hospital?
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Uproot his family (if he has one) meaning sell family home, himself and wife have to find new jobs. Wouldn't of thought that was even an option.
 
robfosters said:
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.
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Good luck Rob. Staying in hospital for up to a year doesn't sound too appealing but then again if it gives you a shot at a transplant that might dramatically improve your quality of life then...

On the other hand - I've been in hospital on a ward where one bloke had been there for months - he had everything set up nicely for himself... had a bed by the window, his own TV brought in and set up on a ledge - literally every nurse who came on shift knew him/was his mate etc... the guy seemed to have adapted/got used to it etc...

Bit baffling why you need to actually stay in hospital before they've even done anything tho...? Like if you weren't going to opt for the transplant would you still be at home? Is it some critical timing thing - like if/when a heart becomes available they need to transplant it in some short timeframe?

I guess if it is just a waiting thing then at least you're not lying around for months with tubes/cannulas stuck in you and some little stand with drips/pain killers and the associated little machines on it etc... to drag around everywhere you go.

Bit odd that it's Newcastle if you're living in London - I thought the Royal Brompton in Chelsea was supposed to be the top heart related hospital in the UK, it's like their speciality - they do transplants etc... there.
 
dowie said:
Bit odd that it's Newcastle if you're living in London - I thought the Royal Brompton in Chelsea was supposed to be the top heart related hospital in the UK, it's like their speciality - they do transplants etc... there.
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Yeah that's my wifes hospital, surprised they aren't involved tbh.
 
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?
 
I don't think it's really a decision. If it saves your life then for me it's a no brainer.

I suppose the alternative is that if no organs become available, then you might regret spending however long (think you've suggested <1year in other threads?) sat in a hospital bed. But i'd definitely be making that call, it might help you survive to see Arsenal become a decent team again :p

As @dowie mentioned, it's a long time but i imagine you'd get very friendly with the staff and other long term patients which might make it more tolerable.
 
robfosters said:
What would you do?
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I guess the first "win" is assuming you meet the criteria and continue to be well enough, you will have a choice to make! "They could have said sorry, it's the end of the road."

As hard as that may be on yourself, these things can be as tough on those close to you. But it is a choice that may well be life saving and life changing. Talk to those around you and try not to bare the full weight of the decision alone as it will impact those around you regardless of your choice.

I've had heart problems myself for over 20 years and while I've not been in hospital for anything like a year, I have spent weeks at a time and shared some time with a chap who had been there for close to 5 months or so. He was also some distance away from his family. As has been mentioned above, when you are in for any length of time, you set up camp so to speak. You gather the things around you that you need and because you are in there for so long, form a better relationship with the nurses/doctors/staff than you do on a quick in and out. Likewise as you have mentioned being in hospital will give them the opportunity to monitor and support you until a donor becomes available.

Now I don't know how large your immediate family is, but I'm sure they would all be eager to spread the load of visiting as and when they can. I'm sure when the time comes the hospital will also support you on that side of things too. I'm sure if you speak to your family their answer would be "don't worry about it, we'll sort it, one way or another"

Regardless, I wish you the very best.
 
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robfosters said:
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?
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I genuinely wish you all the best and cannot imagine how difficult it is. If it was me, I would probably stay in the hospital. It will become a second home soon enough and when the time comes for the transplant you will comfortable in your surroundings and know all the staff. It also sounds like the best place for it on a pure level of expertise basis.

We have a friend who had to stay for 3months during her pregnancy, she said it was hard, but the staff looked after her and she basically became queen of the ward, like some kind of prison situation where she was the big cheese.
 
robfosters said:
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.
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Would you be in hospital otherwise? I mean it just seems a bit odd that if you opt to not have the transplant then you might otherwise be at home (without the IV medications etc...) but if you opt to have the transplant (a future event), you're still in the same condition medically (that would otherwise leave you at home) but for some reason need to be in hospital and that reason isn't related to being nearby if an organ is available. I mean it comes across from what you've said as though you choose the transplant and the NHS will take you in cos you're vulnerable and need to be in hospital 24/7 now... but if you don't choose the transplant then they'll leave you to fend for yourself at home even though you're in the same (current) state medically irrespective of your personal choice?

I hope you don't have to be hooked up to too much equipment... I mean if you can chill in a chair for most of the day, have some mobility and have books, laptop, tablet etc.. with you then perhaps not so bad. Hopefully they'll have facilities for long term patients - cinema, activities etc.. gardens and shops downstairs etc... :)

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?
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Well if they think they can do it successfully and the last bloke just completed the great north run, and if that offers a massive improvement in terms of quality of life and/or improves your life expectancy etc.. and if that was otherwise looking a bit grim then I'd be inclined to go for it! I mean technology is improving all the time, get through this stage and you might well have some other devices available to support heart function etc.. in years to come too.

Wish you the best of luck with it all. :)
 
Personally I'd get myself a gaming laptop, a phone contract with unlimited tethering data and a train ticket up north.

You're 38, if you were 78 then I could see why you would consider spending your time at home with love ones.

This is your best chance, grab it with both hands! Family are sure to visit you for weekends, I'd imagine they'd be unimpressed if you didn't 100% go for this.
 
Amazing to hear about the recovery of the previous patients that had both organs transplanted. That could be you in 12 months time.
So go for it and fight with everything you have. You would clearly be in the best hands. And remember Max and Kiera's Law comes into effect soon, so waiting times may go down.

All being well I could have a new kidney and you a new heart and liver this time next year.
 
The Freeman is absolutely the right choice for the operation you require, even if you’re 40 by the time you recover, you then have many years ahead of you to start enjoying life again.

From your previous posts on here it sounds like your quality of life is already rather poor and how long would you have to live if you refuse this opportunity? It will absolutely be nerve wracking and you’ll likely be anxious every single day up until the time comes but it’s a small price to pay if you get another 38 years!
 
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