What happens to me next!!

[Bookwormfanati]

Hi all! I am 40 years old and was diagnosed with PBC almost 3 years ago. Was originally told it would progress very slowly, but last month was told I need a Liver Transplant!! I have tests and awaiting a referral to Birmingham for an Assessment. But that is everything I know and the waiting and the not knowing anything about what's going to happen is driving me insane!! Any advice would be very very much appreciated right now xx

[Ktltel]

I'm so sorry to here this. Where did you start 3 years ago...I mean what stage were you diagnosed at 3 years ago. Most people do progress slowly. I know this must be so frightening. How do you feel? Any pain, nausea, jaundice? What have your labs been showing over this last 3 years. Were there no signs suggesting such a rapid progression?

Stella❤

[Bookwormfanati in reply to Ktltel]

I was told nothing 3 years ago other then I had PBC! A year later I saw a Consultant who described my insides like a tree and branches lol 2018 I was told it was progressing nicely (whatever that meant) and then last month was told it was showing as severe Cirrhosis (non alcoholic) on my bloods and I needed a Liver transplant! I have never ever itched so badly in my whole life and literally in the last 2 weeks have started turning yellow, have red palms and a stomach full of fluid. Just all a massive shock after being told it was slow progressing xx

[Hidden]

I'm sorry that you find yourself in this position with little advice on what to expect now.

You have been referred to one of the best places in the world. There are other people on this site, which is hosted by the PBC Foundation, who have been transplanted and who can give you great reassurance from their personal experience.

The PBC Foundation, if you are not a member, is free to join, was founded by Collette Thain who herself was diagnosed with PBC when a young woman. Her son Robert, whom you see in the icon under the Pinned Posts to the right of screen is a most knowledgeable and compassionate layperson in the community of world-experts in PBC. They are the most helpful and supportive patient advocates and educators you will find. They are very approachable and they have access to the most renowned hepatic professors. In fact one of these will likely be involved in some way in your care.

There is a load of support for you on this site from people who have had transplant, people waiting for assessment, and people listed for transplant.

Every aspect of what you may experience, someone among us, and often many, will be able to reassure you and you will not be alone.

Very best wishes

Phyllis Stein

[Bookwormfanati in reply to Hidden]

Thank you very much will join xx

[Hidden in reply to Bookwormfanati]

You are so welcome, you won't regret it. It is so typical that Huggy lands here right when you needed! Best wishes!

[butterflyEi]

I am sorry to read your post, it is a worrying time for you. PBC does progress slowly for a good many of us however some like yourself progress that bit quicker. The black hole of not knowing is very stressful and I wonder if you would like to look at a link I have found for you.

uhb.nhs.uk/liver-transplant...

Nothing beats talking to people who know so you may find a telephone call to the PBC Foundation very helpful. Their knowledge is invaluable at times like these.

I do hope this helps, please keep coming back to us for any support that we may be able to give you.

Hopefully someone with experience of transplant will also chip in, however I suspect that each individual case is unique to each person.

best wishes

[Bookwormfanati in reply to butterflyEi]

Thank you for the link explained more then the Doctors have! Xx

[Huggy7614]

Good morning Bookworm,

I normally lurk on the liver trust part of this site, an area I suspect could be of use to you.

I also have/had PBC. But, have recently had a transplant at .......Queen Elizabeth, Birmingham!! Firstly I would say that you will be referred to one of the best transplant centres in the world.

Firstly at Birmingham you’ll meet a hepatologist, in my case he said ‘you have pbc, you’re fit enough to cope with a transplant which is the only remedy, so we will put you in for assessment.

A month later I was back for a one day assessment which basically involves running around the hospital to various departments to have ct scan, x rays, heart checks, breathing tests and loads of blood taken.

A couple of weeks later you’ll go back for a two day assessment. This one will be mostly meeting people, surgeons, anaesthetists and the like, as well as someone who has had a transplant. These days will be on a Wednesday and Thursday, with the result on Friday afternoon when they will telephone you.

You will have lots going on between now and end of assessment process. But, it’s all quite positive. Do not fear any single part of it. It initially seems daunting but it is a very thorough process, with incredible support all the way through. The transplant co-ordinators are some of my favourite people. They will guide you all the way through.

Should all this be successful, then, from a personal experience, my transplant was quite literally life changing - in a good way. All previous symptoms pretty much disappeared overnight!! I remember on day one post tp, lying on my bed realising i didn’t feel cold - and I only had a hospital

Gown on!!

It is a very daunting thought, but please believe me, it is worth it. You will have a huge amount of support, Pre tp and post tp. My recovery has been great, out of hospital after 9 days, and now slowly back to work (physical work) after 3-4 months.

The only down side to the whole process was the food at qehb was horrendous!!! 😜

Relax, as the process moves on from here you will be well cared for and a huge amount of information will come your way.

Keep yourself as fit and healthy as possible - it’s hard to move up and down the bed post operation, the stronger you are the easier it is!!!

QEHB is a fantastic place and you’ll be well looked after. Ask lots of questions.

Good luck.

Andy.

[KevinHall10_ in reply to Huggy7614]

Hi Andy, does pbc make you cold?

[Huggy7614 in reply to KevinHall10_]

Hi Kevin,

Pbc doesn’t make you cold, but liver failure sure does!! I used to sit on a radiator heat on full, with a coat on, saying ‘god I’m frozen’ while everyone else was walking around in t shirts!! Apparently the liver acts as the body’s radiator!! For about 8 months Pre transplant I was frozen!!

Andy.

[KevinHall10_ in reply to Huggy7614]

I'm always cold, I'm in stage 2. I will be with a sweat shirt in the summer, with thick socks..lol

[Hidden in reply to Huggy7614]

PBC can interfere with our thermostats. It often goes undiagnosed in women because the majority of us are diagnosed in peri-menopause when hormones are rioting anyway.

[Bookwormfanati in reply to Huggy7614]

This reply must have taken you ages but thank you so very much it has made me feel more prepared! I will defo be packing some food to take with me lol I am so pleased you are doing so well I was expecting weeks in hospital and with being over a 100 miles away from home and 2 young boys it was terrifying me a bit! Xx

[Huggy7614 in reply to Bookwormfanati]

I thought I’d be in for 2-3 weeks, and then spend days in bed at home. We decorated our bedroom just before by chance, with the thought it would be a comfortable place to recuperate in. Put a tv on the wall, new lights, new carpet........didn’t use it once!! Tv has been on the wall 5 months and used twice - not by me!!! 😜😜

I spent my time sat in a chair downstairs and walking around doing stuff - lightly and carefully!! Went for a haircut in town the day after I came out!!!

Don’t fret about it, there are loads of us to chat to. There is no such thing as a silly question!!

We are 100 miles away too - in Wiltshire. But with older kids!! You will get it sorted, don’t worry.

Andy

Oh and yes it took bloody ages!! Sorry it was so long!!! 😆

[Bookwormfanati in reply to Huggy7614]

That's where I am! Under Salisbury District Hopsital xx

[Huggy7614 in reply to Bookwormfanati]

I’m at the RUH, live in Trowbridge!! 😀😀

[Melwoods]

Hi o also had pbc for 3 years and they transplanted me for irretractable itch on the 1/5 this year

You get lots of information at assessment

Birmingham is absolutely amazing

They have been fantastic with me as had a few set backs after transplant

Join the liver transplant support group

Queen Elizabeth Hospital Birmingham on Facebook

It’s a massive support and I have made some great friends through our transplant journeys.

I’m not going to lie it’s been a tough road and a massive emotional rollercoaster so just take one day at a time etc x

[Huggy7614 in reply to Melwoods]

Well put Mel. Just looked at how long my post was!!!ugh!!

Only remembered after to mention the support group.

Good luck on your recovery. Andy.

[Bookwormfanati in reply to Melwoods]

Thank you will add the group xx

[cazer]

Hi bookworm, I'm 56 and had my transplant at Queen e 2 years ago...

Don't panic...

You will go for some physical tests e. g... Breath test, ecg etc... Nothing horrible.. Just tests to make sure your body is up to the op.

Then on a separate visit you have 2/3 days about all the psychological stuff, you will meet someone who has had a transplant up there and chance to ask any questions you may have...

If all these 2 sessions are okay they will then decide if you are at the point where you go on the list to wait for a suitable organ...

This must be a huge shock for you... I was the other way round... Told I would need one in 5/10years originally and went 20!!!

Are you under qe already??

Even if your local consultant says you need one now... Qe may feel differently... They see people at every stage of damaged liver... So just bear that in mind that they may feel you are not quite a the right point for a transplant...

Once I was on the list I had my transplant after 6 weeks... Thought I would be months waiting... But was taken aback to get the call...

You can ask me whatever you like...

I was home after 10 days and yes it's a very big op but the transplant staff are amazing...

The assessment people are lovely so please don't be worried about that part...

Very very best wishes cazer. X

[Bookwormfanati in reply to cazer]

Thank you ever so much! I am under my local hospital still but my Consultant trained Dr ?? Something beginning with a S I have forgotten lol and calls him his mini me so I am really happy with that xx

[cazer]

Message me privately if you like x

[cazer]

Wait and see what qe think... They may have a different take on things..

Sounds like you have a nice consultant at the moment... But you will have both lots once you are under Birmingham... Which is great to make you feel more confident...

They are seeing pbc patients all the time.. So that's the difference...

My consultant in Somerset is nice but qe are in charge... Ha ha as they have all the knowledge.... Xx

[JaniceK]

Hi, I was diagnosed in 2004, and it is only this past 18 months that I now have varices, the Edinburgh consultant at the liver hospital does not think I need a liver transplant or would be put forward for such as my liver is good apart from the biliary ducts not working so hence why I have the varices. Happy for you to contact me on private mail with any questions. Janice

[Bookwormfanati in reply to JaniceK]

Varices is 1 of the only things they haven't found yet! You have done really well to have had it since 2004! I need to know your secret! Lol xx

[KevinHall10_]

Were you on urso?

[Bookwormfanati in reply to KevinHall10_]

I was put on it in December 2018 by a different Doctor who didn't understand why I wasn't already on it! Xx

[ninjagirlwebb in reply to Bookwormfanati]

I think part of the issue of why you also progressed quicker was that your doctor didn’t put you on urso right away. Urso slows down the progression.

I hope all goes well for you. This can’t be easy on you. We are all here for you. Hugs.

[KevinHall10_]

So you are in the latter stage it sounds like it? Good luck and take care...pat

[Bookwormfanati in reply to KevinHall10_]

I had the newer ELF blood test?? That was actually ordered by my GP who wasn't pleased with the way I was being treated and my score showed I was in the last stage of severe Cirrhosis.. still none the wiser! Xx

[Bookwormfanati]

Hi all! Hope you are all as well as can be. Does anyone have any ways or tips on how to calm down this horrendous itching???? I am so tired the tears keep coming and I don't want to cry in front of my children!!.🙈😥 xx