Second Opinion Update

[Bs1524]

So it has been a little while so here is an update on my husband. After Cambridge declined to go any further with the assessment we were encouraged to go for a second opinion. We have been to Leeds and they saw no reason not to carry out the assesment which was encouraging. However they said they do not feel,able to support him through transplant due to his weight and level of fitness. All is not lost they are requesting his Heptologist keep talking to them and if he his liver function should worsen (they said it is too bad) and he has sustained weight loss and increased his fitness they would look at him again. Although that wouldn’t take away the surgical risk it would take away the anaesthetic risk. They said there was calcification but they would consider him. Also the consultant has offered to speak to an orthopaedic surgeon she works with who has experience with liver patients to see if he will give an opinion on his knees. His knees have rendered him with very little mobility and a whole lot of pain.

Kevin is very down but to me it is still positive they are not washing their hands of him not saying he is a lost cause but all along I couldn’t see how he would be capable of any operation. It is a bit annoying as for the past two years I have been bring up his weight and we have been told not to attempt to diet or well he isn’t very mobile.

So not great news but not all bad either. I think the biggest thing was that his liver function wasn’t too bad if we can improve his weight and fitness (exercise bike on its way) that will help his knees anyway.

Pam x

[Hidden]

HI

Its not at all easy for you both, but I agree the door is at least still open

When i was in hospital a couple came in where the man really was not well enough, but within a few weeks they got it turned around and with his liver getting worse they carried out the transplant successfully (Its a longer story that included them getting married in the hospital)

Focus on getting the fitness going in what every way you can. it all about convincing them that you will do whatever it takes, that way they will use a very valuable donor liver.

I hope you can both re-focus and get the chance for a transplant, my thoughts are with you both, keep pushing them!

David

[Bs1524 in reply to Hidden]

Thank you well he has lost half a stone already we are still waiting on delivery of the exercise bike. His Dad got involved as he wanted to help in some way now we have no idea when it is coming. All last week he said any day now.

I really couldn’t see how he could have gone on the list how he is for any op to be honest but I am miffed that all the times I mentioned his weight and his knees I was dismissed or told he mustn’t lose weight it is dangerous. They also kept saying it was fluid well it wasn’t it is fat.

I wish we were still going back to Leeds to check ups though despite the journey to get there.

Thanks for your words of encouragement we really need them

Pam x

[Ewife in reply to Bs1524]

Hello! Glad you have some hope and positivity to focus on. My husband has had rheumatic/gout type symptoms for years, he ended up living on strong anti-inflamatories which eventually helped cause his cirrhosis. However, since being on the transplant register, he has become determined to increase his fitness (=quicker recovery, less time in intensive care). He has lost weight, and pushed through the pain barrier, and is now able to do long distance walks and go to the gym - something he hasn't been able to do for years! He started off with an online physiotherapy course and progressed from there. I hope this will encourage your husband to persevere a bit more. Interestingly, they are now investigating whether the joint pain is a rare form of haemochromatosis - I'm sure Leeds will pick this up if there's any likelihood of this in your husbands case.ATB,

Ewife xx

[Bs1524 in reply to Ewife]

Thanks his fitness is hampered by him needing two new knees at the moment he can only hobble. Losing weight snd getting fitter can only help in so that s what we will do. We have been warned against rapid weight loss but he had lost half a stone already so going the right way.

Pam x