Assessment.

Thank you all for responding to my question. My husband had a gastric bleed recently, spent 2 weeks in hospital and lost all the weight and muscle that we had worked so hard to build. He's now been home for 2 weeks and is still very weak. Having read all your responses, I'm now worried that he won't be strong enough to manage the physical side of the assessment. It's never-ending isn't it!

[AyrshireK]

Part of the transplant assessment process will be the intervention of liver specialist dietician, if they feel hubby is too weak currently they will look at what can be done to improve his dietary condition and weight situation whether that be introduction of more supplements or even nasal gastric feeding. They will do everything they can to check he is healthy enough for transplant and try to get him there if need be. There are alternatives to the actual physical bike tests etc. I believe Miles/TwoSmiles had his heart stress test using an injection of some sort of medication with monitoring rather than the usual physical exercise test of bike or treadmill.

They will give hubby a real good MOT and if they feel he isn't strong enough just now they will try and get him fit enough if at all possible. We've had members on here who have been given numerous chances to try and get up to a standard of health which will allow transplant to be an option.

Fingers crossed for you both, it is a hell of a journey. But he will be in good hand.

Much love, Katie x

[alfredthegreat in reply to AyrshireK]

Hi Katie. I had adrenaline injection instead of treadmill because I was not strong enough. Test had to be abandoned as my blood pressure plummeted and so it was unsafe to continue. I thought that this would remove me from the chance of transplant but here I am now 9 weeks post transplant! I was also very weak with huge muscle loss.

[Hidden in reply to AyrshireK]

Hi Katie and Catcher

Katie - What a memory you have - very very impressive! Yes I had a myocardial test instead of going on a dreaded - well it was for me at the time - treadmill....

“Myocardial perfusion imaging (MPI) is a non-invasive imaging test that shows how well blood flows through (perfuses) your heart muscle. It can show areas of the heart muscle that aren't getting enough blood flow. This test is often called a nuclear stress test. It can also show how well the heart muscle is pumping.”

It’s called a nuclear stress test because you are given some sort of radioactive (don’t panic - you won’t feel anything particularly odd!) injection and another injection that makes you heart supposedly race like you have run a marathon. I wish I coul feel like that after a marathon because I couldn’t even tell my heart was racing. Mind you I have never (yet haha), run a marathon so what do I know lol.

So Catcher, as Katie said, they’ll do everything possible for your husband. Plus the assessment isn’t physical in my opinion, lots of tests where you lie down, and if he’s like I was, fall asleep - embarrassing 😁.

Plus look at alfred, I mean, if he can get through, anyone can! I’m only joking alfred 😁😁.

All the best to you both Catcher.

Miles

🇧🇧

[alfredthegreat in reply to Hidden]

Many a true word spoken in jest Miles! lol. You and I had the same test. It was the adrenaline that was put in slowly to get your heart race. Think my BP dropped because it was already on the low side because of liver failure and no one had thought to take me off the tabs for high BP that I'd been on for donkeys years! I had become so weak and with pipe cleaner legs and arms that no one was more amazed than me when I got that call and I went through transplant. I don't think I'd have made this Christmas without it! Think somebody up there put me through hell for four years and then suddenly thought 'You know he's not such a bad chap after all!' Well I must do my best now to be a credit to my new organ and it's donor. I shall be ready for that race Miles, maybe not in a year but deffo by summer 2020! So get working out when you're ready and able. Hey we could get other post transplantees involved and have a mini marathon, if there is such an animal!! All the best to you Miles and everyone on here. Power to your elbows!! (and all other parts too!) Alfred.

[Hidden in reply to alfredthegreat]

Hehe alfred well some he hes 😀

I’ve only got pipecleaner calfs! He he one to me 😀👍😃🙂😂

I had an endoscope once which had to be aborted because the bp kept going down!

[alfredthegreat in reply to Hidden]

AAAAAGGGGHHHHH!! The endoscope. Just had it once thankfully and a few years ago. Be interesting to see how long it takes to get some muscle back, a good while I expect as we won't be doing anything too energetic whilst we heal. Think I might take up arm wrestling, lol.

[Hidden in reply to alfredthegreat]

Alfred, do you watch the Apprentice? Chap on there broke his shoulder doing arm wrestling !

So be careful : ummmmmm

[alfredthegreat in reply to Hidden]

Might just give arm wrestling a miss then! I've actually just received a scan app. because I have rotator cuff syndrome (can't lift my right arm above my shoulder) so arm wrestling is definitely out! lol. Just seen my transplant team this afternoon. My Tac has been reduced, so has my prednisolone. All with the liver is good. A scan is being arranged to try to find out why my back is hurting so much. District nurse came this morning. My wound is still bleeding slightly. So it's very slow but sure for me but I'll get there. Be racing you in 2020, .lol

[Hidden in reply to alfredthegreat]

Hey up chuck

Alfred - hate to say this (but of course you will be different) I had terrible back ache and pains before the tp. I was sent for an MRI scan and was told (in less than a week - impressive I thought!) that my spinal cord was being impacted by my spine right at the bottom and I’d need an op PDQ. But of course 2 + 2 was put together and I was told no op until after the tp and off most tablets 🤭

So when I get better I’ve got to have a back op (now that is scaring the heebbeejeeies out of me) and a cataract op (but that’s easy - one done already 😁). So I’m hoping it won’t be a wheelchair race lol 😁. No it won’t my glass is nearly 3/4 full 😁

Miles

[alfredthegreat in reply to Hidden]

My back probs didn't start until 4 weeks post transplant. I'm hoping I've just twisted something getting out of bed trying not to use my stomach muscles. Surgeon thinks it could be to do with losing bone density over last few years. Hopefully we will both get sorted out over next few months. We could have a wheelbarrow race in 2020, using a real wheelbarrow and taking turns with the pushing and riding, lol . Keep on trucking mate!

[Will3]

Hi Catcher,

I could barely stand and was on oxygen 24 hours a day when I did assessment, I did it as an inpatient. I had no treadmill or bike test and got through it.

All the very best

Will

[Hidden]

Catcher,

My journey started with bleeding variances, requiring surgery. 18 months in and out of local hospital, infected acaeties, regular drains, heart problems etc, etc. Once they got me well enough, onto the Royal Free, decompressed, alcoholic, cirrhosis. Assessment, got through etc, etc.

Good luck but everything will be done to get your partner transplanted.

[Hidden]

Why does spellcheck always change things, especially medical terms, frustrating. Read through before hitting send!

[alfredthegreat]

Hi Catcher, Like Miles said there really isn't a physical side to it unless he goes on the treadmill and they won't put him through that if they think he is not well enough. All the other tests are x rays and scans and bloods, all sitting or lying down sort of stuff so don't be worrying unduly. Easy for me to say I know because I'm through it now but at the time of assessment my wife was totally stressed out. After me failing the myocardial test she was crying all the way home and now with hindsight we realise that we were heaping more and more stress on ourselves with all the 'what if's'. So listen to all the caring folk on here and bring any worries here before stressing over them. All the very best. Alfred

[Dogschance]

I sympathise with your husband as I’m trying to decide whether I could cope with the assessment as I’m physically very week after a number of years with not just liver disease, but heart problems, back pain and various sorts of ulceration. Plus having to recover from various episodes in hospital that may have sorted the immediate problem, but left me more tired and less fit and less mobile than before. I have to watch my blood pressure as I’ve had falls and dizziness and can’t walk more than a few meters. Have now had to buy a wheelchair!

So the idea of having to travel to London for several long days to be poked, proded and scanned for hours is very scary. I’ve failed to find any clear info on what actually happens during the assessment or practical issues like if one has to stay in the hospital, need someone with you, transport/parking and cost. This ‘gap’ is worrying as is the lack of detail about people’s experiences of Kings College. Thanks for any resonses.