transplant eligibility

[Bexbooboo]

Hi all, my hubby has got end stage liver disease as a result of Haemochromatosis and having drank alcohol not knowing he had this has accelerated the damage.

He’s currently in hospital he’s having to have his ascites drained regularly and his consultant has started doing the work up to refer him to a transplant centre.

So currently due to his pancreas being effected too he has lost a lot of weight and it has impacted his mobility and is currently not able to climb the stage. The doctor has said my hubby needs to build up his strength and mobility, he said as a rule of thumb the transplant centres normally require a fitness level where you can complete two sets of stairs to be able to have a transplant.

Did anyone else find this?

As it feels like he will never manage that and he’s only 34 bless him.

[AyrshireK]

The thing with transplant is you need to be ill enough to need one yet fit enough to get through the operation.

The test for fitness is about lung and heart health and anaesthetist plays a big part in saying whether or not someone is 'fit enough' to go through the operation. At Edinburgh the fitness assessement included an exercise bike with all sort of monitoring on the patient as they cycled - the assessor told my hubby that they frequently have to lift liver patients onto the bike (other centre's use a treadmill). There is a heart scan and a big lung function assessment. They can replicate the heart stress test (exercise bike) using drugs and I believe Miles on here had that instead of a physical exercise test

Part of the assessment process involves dietician involvement too - there is a assessement of physical health, muscle mass, grip strength and more and the dieticians are heavily involved in building the patient up so they are strong enough. Although my hubby was a good weight going into his assessement he had lost significant muscle mass and the dieticians put him on supplementary drinks and supplementary feeding (he ended up on an n/g tube) to build him up. [When he had his transplant and was in hospital for 18 days he lost a stone in weight so it demonstrated the need for the extra reserves).

If your hubby is found to not be well enough (yet) they will do all in their power to get him physically fit enough to have the operation. They did all they could to keep my hubby in the right percentile muscle/weight bracket to have his operation even when due to Hepatic Encephalopathy he ended up being totally unable to eat.

I can pm you a wee leaflet we were provided about keeping fit whilst awaiting transplant that has some tips for exercise - my hubby was doing some light arm exercises and standing up/sitting down (not using arms) and this all helped in his post-op rehabilitation.

Wishing you both all the best,

Katie

[AyrshireK in reply to AyrshireK]

Is hubby able to get out of bed and do some standing up, sitting down and have a short wander even if it's up and down the ward. Any exercise will help and also provide evidence that he's willing to do all he can to improve his chances.

[Bexbooboo in reply to AyrshireK]

Hi Katie,

Thanks so much for your reply and yes please that leaflet would be a great help!!

He’s under the dietitian the issue we are having at the minute is access to food whilst in hospital around meal times we’ve taken plenty of snacks in for him. He’s finally getting his appetite back a bit for main meals as he was finding it quite hard going so was concentrating on managing the pudding. Now he is having part of the main plus his pudding.

I’m just hoping we get him home next week so we can really work on building him up he’s spent 9 out of the last 10 weeks in hospital.

Yes he’s mobilising as much as he can around the ward and we have input from physio too.

[AyrshireK in reply to Bexbooboo]

My hubby ended up unable to eat solid food at all - he had bad HE, couldn't tolerate reinsertion of n/g tube after it came out, just chewed food unable to swallow and was throwing up. He ended up only able to (just about) tolerate 7 supplement drinks a day and that got him to transplant.

It sounds like your hubby is getting good support. See about prescribed dupplement drinks, if he's diabetic they'll threw his blood sugars sky high but diabetes team should become involved - my hubby got cirrhosis related diabetes towards the end and he went on to insulin (high doses).

Post t/p it took about 14 or so weeks for my hubbies appetite to come back and it has with gusto. Eating well and healthy, off supplement drinks and even potentially coming off insulin.

Keep on being positive, team will fight all the way to get him well enough.

Best wishes, Katie

[Ewife]

Hello,

Transplant team will assess your husbands strength and fitness in the light of being able to sustain the huge surgery and recovery. Each clinic visit they also do a Frailty test so that they can monitor this. (Weight, handgrip strength etc).

You will also be asigned dietician advice if needed - in your case, Id ask for it too. Both yours and your partners participation, drive and eagerness to improve will be noted and taken into consideration.

Having the transplant ahead of him gave my husband the motivation to get fitter. Once he was listed he worked so hard, daily walks etc, gradually improving the distance he could go, because one of the team had told him that the more he improved fitness, the less time he would spend in recovery! He improved so much he was actually de-listed briefly. He was successfully transplanted in May.

I hope all goes well for you,

Ewife

[Bexbooboo]

yes he’s on the fortisip compact protein 4 daily in addition to what ever diet he can manage. Thankfully they don’t mess too much with his blood sugars. And the ward after me nagging are finally giving his pancreatin with everything he has so he actually gets benefit out of it he’s only 52kg so we have some work to do but we will get him there.

I think it’ll be better once he’s home as he will have a greater access to different foods.

Thank you all for sharing your experiences

[Yellowsydney]

Hi, sorry to hear your husband is in this position, it's sounds as if you are doing all you can for him. I had my transplant assessment at Addenbrookes, there was no bike test, walking tests, they measured lung capacity by blowing into a machine and I had an ultrasound of my heart , although I was walking all over the hospital during assessment, I don't know of anyone else at Addenbrookes having bike or walking tests.If you use Facebook please feel free to join our friendly and knowledgeable Facebook page called liver transplant support uk, thousands of people that have been in your situation.

Good luck, keep encouraging him.

Hilary xx

[AyrshireK in reply to Yellowsydney]

Addenbrookes is the centre that does the heart stress test with drugs. Edinburgh does all the tests you describe plus the bike test. Miles was another Addenbrookes patient.

[Yellowsydney in reply to AyrshireK]

I never had any drugs for heart test, just ultrasound of my heart.

[lonmallin50]

There was no tests for fitness at Birmingham l could not walk that far myself with all the fluid in me l only had x ray scan. so it must be different every place

[Ubwa]

I think it depends on your general conditions and what the doctors think of your situation in deciding before what tests you need.

Prior to both my transplants I just had the chest x-ray, echo and lung function test, despite being described as "the sickest person on paper they had ever seen", but I was fully mobile and active, so it can be subjective.

This was in Birmingham. Each centre has their own slight different ways of doing the assessment.

[Bexbooboo]

that makes me feel a bit better that it could be in reach then as we will be Birmingham too.