doc need listining to me :(

[Hollyjane]

fatigue amd back pain..i cant cope! i have only managed 8hrs this week at work and yesterday i couldnt walk..my heptologist just shrugs and says pain is expected..yet at the same time says im stable...despite needing 2x fluid tablets to keep ascities away, jaundice ,cramp (severe), and shaking hands (but doc says he sees no sign of HE during a 15min appointment...again this is post a stay in critical care with HE . and on lactalose to try to manage...i feel i need to be on tranaplnt list because i cant keep goinglike this..im 33 and feel 90 😭😭😭

[AyrshireK]

Are you being treated at one of the Transplant Centres? If not I would ask (in writing) to your consultant for a referral to at least touch base with a liver transplant unit. My hubby was referred a year before he was finally assessed for transplant and they took over his care so much so that after 10 months on the list he was deemed stable enough to not require listing at this time. He continues to be monitored both locally and at Edinburgh even though he isn't on the t/p list.

Transplant units do say they would prefer to see people too early rather than too late. At 33 you want to be living life not merely going through the motions.

If you don't mind me asking, what has caused your cirrhosis? Sometimes that might cause a delay to referral to t/p centre.

Katie

[Hollyjane in reply to AyrshireK]

i have a rare liver diseasewhich caused the hepatic and portal veins in my liver to conpletly block off so needed a shunt..still havea hemangioma and increase portal hypertension x

[G2018 in reply to Hollyjane]

Hi Hollyjane - I’ve got a shunt due to Budd-Chiari. Most days I’m fine but the bad days just knock me completely. I find I stiffen up and my co-ordination and concentration go, everything is just a struggle. Comes on very quickly and goes like a cold or 24 hour bug would.

[Hollyjane in reply to G2018]

i have BCS

[G2018 in reply to Hollyjane]

I’ve just turned 28 and was diagnosed the start of the year. Treated at QEHB.

I’ve only spoke to a couple of people with it. I went down a few paths before finding out it was BCS.

[Hollyjane in reply to G2018]

i was diagnosed in december..also treated in QEBH...are u on the facebook support page? how do you manage work? i NEED to be able to do nearly fulltime but my pain level and fatigue is such an issue..i feel i must be such a wuss

[G2018 in reply to Hollyjane]

Not on the Facebook page. Work is interesting - it’s difficukt to explain what’s going on. I do 4 1/2 days a week but it’s catching up with me.

[Brett11]

I’m exactly the same Holly.

Unfortunately your doctor is correct. Fatigue and pain etc go hand in hand with cirrhosis. Your liver sounds compensated at the moment which means that it is coping with a little help from the drugs you take. I’ve been told that a transplant is still not a miracle cure. It will take away the cirrhosis but you could get other problems.

I take every day as it comes and am thankful that the 20% of my liver that almost works is compensated at the moment.

Cheers,

Brett

[Hidden]

Am sorry to hear of your circumstances in fact my heart goes out to ALL these fighting liver disease. But do you have someone who would give you part of their liver.. I was told it helps. Check into it. Prayers to you. Also cant you take a leave from work to look into what you need to do to keep at least more mobile and healthy?