Update

[jules45]

Hello everyone and happy New year, I have two hepatologist, the one here in Wales an nd the team at q e Birmingham. Saw Welsh one new years eve and he explained his job is to get me as fit as possible for my case for transplant in Birmingham. Increased spironolactane to 200mg per day and furosimide to 8omg. Introduced high dose laxatives as I've had dreadful HE. Had à fall just before Xmas and bashed my kidney and was weeing pure blood so had catheter fitted for 4 days. Got told I'm end stage liver disease nòw? Ankles have slimmed but tummy huge. Going bà ck to birmgham 30th. Been told I'm a high risk surgical patièñt so working hard oñ my fitness. Ĺòvè to you all , julie xxx

[Jans1953]

Good Luck Julie. Have you been put on the transplant list yet or do you have to wait whilst you get fitter?

[Hidden in reply to Jans1953]

Hi

I hope you get put on the transplant list very soon. Please take care. Love and hugs Lynne xxxx

[jules45 in reply to Hidden]

Hi! I have to wait untìĺ I get fìittèŕ, seeing dietician at birmingham and consultant, love juĺie

[jules45 in reply to Jans1953]

Im under close scrutiny with fitness and ďiet for Birmingham so doing what they say xx julie

[Hidden]

Amazing how it works isnt it? They let you get so bad off before allowing you to be considered for a transplant and then they have to work to get you better before they will go through with it. Just blows me away the lack of logic. Aside of that you go get it love. You show them your fit and ready for action. I wish you all the best and you'll get there 😊❤

[jules45 in reply to Hidden]

Thanks very much for reply, best wishes love julie x

[Hidden]

Oh poor poor you jules

Like phoenix the seemingly illogical sequence is hard to follow. BUT jules, you go get it! Birmingham is FANTASTIC, that’s where I had my TP. You won’t believe the number of liver consultants there are - I think I’ve seen them all 😁

I used to laugh in the face of HE ( lost count of times hospitalisated) until Ayrshire Katie et al told me what it can do to you! Yoiks. But I’m still here and reckon I’m still compus mentis - although wife may not agree hahaha.

Good luck with assessment and getting fit - I couldn’t get fit because I could harly walk. Run? Haha I’ve not been able to run for about 4 years. All that and I still got on THE List. So please try and be optimistic 😁👍

Miles

🇧🇧

[jules45 in reply to Hidden]

Hi! Thankyou for reply, my sticking point is I had a small brain heamoreģ (cant spell), and i have spine disease which classes me as a high risk patient. Been told to lift dumbbells while watching telly. It's reassuring when you say Birmingham are good as I'm scared. Hep in Wales is tackling the HE and due for Birmingham 30th so I'll update agàìñ, thankyou love julie x

[AyrshireK]

Hope they can get you fit enough Jules, your situation has been ridiculous and you should have been assessed and listed ages ago before you got this poorly. Your situation is exactly why I often urge people earlier in their liver ill health to seek referral to transplant centre - even to touch base and get on the radar. Edinburgh's website in guidance to clinicians stipulates they would rather see people too early rather than too late.

My hubby was referred a whole year before he was assessed for transplant and even though he is no longer listed or being seen in transplant clinic one of the Edinburgh specialists has kept him on her books and is in overall charge of hubbies continuing care so that should he deteriorate any further he can be put back into the t/p system. Being under the care of transplant team meant they got the other specialists on board - the dieticians, a psychologist (when hubby was really struggling with adjustment depression).

I have got my fingers crossed for you Jules and hope you get better care now you are properly on Birmingham's radar.

Katie x

[jules45]

Thanks katie, you have always been there for much needed support. Wales and Birmingham are now working together and I've been assessed for mental health, next visit is dietician even though I've got one here I supoße its because I'm under a team. Had awful HE at Christmas that ambulance reported I was drunk!! Put my hepatologist in the picture and he said not many GPS or ambulance know much about it. Ànyway, happy New year and thankyou, love julie x

[Febeli57]

Sending prayers your way there will be a good healthy new liver for you!!! I want one too just writing it makes me happy i have a question how do you treat the ascites and what symptoms does it cause do you get out of breath easy?? I see those bulging under my tummy thx

[jules45]

Hi, nice to speak with you! Currently my as cities is being treated by hepatologist in the form of huge doses of duiretics, the main look is that you look pregnant and can't breath. Mine won't shift but my fluid on my anķles has gone. Hope this helps, good luck, juĺie x