liver transplant : build up

[Meanies]

hi everyone I’m really in need of some support. I’m 37 and have liver failure . I went to see my consultant in Belfast a few weeks ago and was my doctor when I attended Antrim hospital hospital. She was extremely direct and blunt with myself. She said my score is is high but didn’t tell me the range. I got a call from my doctors on Friday and they told me they are booking me in for vaccines , I enquired why and they said for liver transplant and should have been told this at my appointment. I have now two other appoints one is the fitness test and one is a ct scan of pelvic area etc. I’m not sure if I’m getting the transplant or not. Also not working so if I get the transplant and it takes place in London and I’m in Northern Ireland who pays for plane, place to stay for my partner etc. I’m also fighting to see my two young children have not saw them in two years and there daddy has custody also on top of that my husband thinks I shouldn’t get the transplant and just trust god so I don’t think the support is there. I’m just don’t know. Any advice is welcome.

[BritishLiverTrust1 Partner British Liver Trust]

Some of the questions you are asking can be answered by the RVH Liver Patient Support Group (Royal Victoria Hospital, Belfast) who can also offer you support plus signposting to other relevant organisations. You can contact them direct by:

Email: [e-mail] or phone: [phone]

Best wishes

British Liver Trust

[Yellowsydney]

Hi, if you use Facebook please feel free to join our friendly and knowledgeable group called liver transplant support uk, thousands of people that have been in your situation. I know there are several people in the group from Ireland that have been flown over to London for transplant, I believe all costs are met by the hospital.

Hilary.

[Meanies in reply to Yellowsydney]

Hilliay what is the group called on Facebook

[Meanies in reply to Yellowsydney]

sorry I read it again got the group

[Roy1955]

I think you need to ask if this is an assesment for transplant or just normal routine for liver disease.Vaccines for flu, covid, pneumonia etc are offered free of charge to all liver disease patients and a CT scan instead of ultrasound is not that unusual for 6 monthly check ups, my Dr sends me for MRI instead of ultrasound because I am overweight.

The "fitness test" sounds like part of the transplant assesment but you certainly need clarification!

As for your husbands comment.

You would not be offered a transplant unless it's to save your life.

Your husbands opinion is to choose death over the chance of a long and health life.

[Meanies in reply to Roy1955]

Thank you for this , I’m not sure who to ask as I’m not in contact with my anyone just keep getting letters for tests

[Roy1955 in reply to Meanies]

If your early on in your diagnosis this might be just routine tests.We all had them and then it goes on to 6 monthly repeat tests to keep an eye on things.

Unless you have severe symptoms you might have misunderstood what's happening.

First visit to the hepatolagist results in loads of seperate appointments for bloods, scans etc and then another follow up with the consultant to get the results.

[Meanies]

I have to see my consultant in march last saw was November. I have liver failure

[Roy1955]

I notice you said "end stage liver disease" in your other post.I hope your not thinking that is the same as liver failure.

[Meanies]

I actually thought it was.

[Roy1955 in reply to Meanies]

Have you had varices? (vomiting blood or passing blood in your poo)

Have you had ascities ( fluid retention that causes your belly to swell and needing treatment)

[Meanies]

yes my nose bled constantly and vomited blood very severe had to get fluid drained from stomach twice. Needed blood transfusions also. That was last year 2022 I have been fine this year 2023

[Meanies]

also on medication 3 times a day

Creon

Thiamine

Spicrolaton

Ompzeapele

Folic acid

Mult vitamin

Rifaxghan pink liver tablet

Names not spelt correctly

[Roy1955]

Sounds more like compensated now!A year without symptoms is a very good sign.

End stage liver disease is just another name for cirrhosis, it does not mean liver failure and does not mean end of life.

Do as BLT admin suggests and call that support group.

Hopefully they can explain things to you.

You will know more once the tests have been done but 12 months without problems sounds like a great recovery and quite a long way from liver failure.

[Meanies in reply to Roy1955]

Thank you the rvh support group are calling me tomorrow. I don’t understand why I have to go for the tests etc. I have worked hard this year no alcohol and positive mindset. I hoe your right

[McEwan1962]

hi, it really sounds like you need to get some support and a clear picture of what is happening. It would be good to get everything in a letter that explains what everything is and what all the tests are for. The RVH liver support group will certainly be good for support.

If you are being assessed for a transplant then that would explain the tests they want to do locally and then I think from Northern Ireland you usually go to King’s in London for final assessment and meet the team who explain everything to you. There may be funding available to help with travel, but I think it can vary and may be means tested. There is very cheap accommodation available called Listen Lodges at Kings which family can stay in and assessment there is usually 2/3 days.

I hope this might help a little👍

[Meanies in reply to McEwan1962]

Brilliant thank you. I got in contact with the liver support group so calling me tomorrow and will find out moe.

[Meanies in reply to McEwan1962]

Do you know why I would be getting the tests if that have not decided if I will get it or not

[McEwan1962 in reply to Meanies]

I can only say what it was like for me, every hospital works slightly differently and it’s great that you have contacted the local group. When I had my diagnosis there was constant testing to see if my liver was improving. I couldn’t have diuretics and was having regular drains. I saw a dietitian to help with eating the right foods and I had really good hepatology support and a few months on we had discussions about transplant. For me that meant two days of local tests and then a decision to refer me to Kings. Everything was put in letters for me so I knew exactly what was happening.

The hospital team will be trying their best for you, however as a long term patient I know that they sometimes I’m scared and don’t always talk to me in ways I understand.

[Meanies in reply to McEwan1962]

The support group called me Ken and he is amazing explained everything in so much detail. He also had a transplant. Did you get your transplant? Il find out I suppose when the times right I suppose. So much information to take in, really over whelming.

[McEwan1962 in reply to Meanies]

I am 4 years post transplant. I’m so pleased you have found support and someone who knows the process. It makes things easier to have someone who understands liver disease🫂👍

[Meanies in reply to McEwan1962]

Do my bilirubin is 69 so not sure what that means. Was 187 one year ago. Dont know anything about blood groups I think im rhesus negative but will find out tomorrow for definite