PBC Foundation
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Pbc post transplant

Hi, this is my first post, I had a transplant for PBC in 2010. Things went reasonably well. Almost 8 years later I have been diagnosed with recurrent PBC. It is generally accepted that 30% of transplantees will be diagnosed with it again. I haven’t read any posts from anyone so far with the same infuriating problem. I was very upset when I was told but I’m trying to accept. Anyone else?

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I've met a few patients with recurring PBC. They are doing well, on the whole.

Technically, it never goes away and transplant isn't a cure. In general terms, the time taken for the PBC to progress in the new liver is so long that it generally doesn't create too many problems. Of course, there are exceptions and it is important to be monitored and to go back onto Urso (if not already on it). If you were a non-responder before, you may be able to go onto OCA for all I am not sure of the protocols for transplanted patients. It is worth asking about.

If you are a member of the Foundation, I am sure there are post-transplant patients who would be happy to speak with you.

Robert.

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Thankyou for your response, I am back on urso. Yes it’s seems there are many differing opinions on the likelihood of pbc recurrence. My consultant at Kings says 30%. Like you say transplant isn’t a cure but I think it only becomes active again in that 30% and maybe the rest is dormant in the genes. I’d like to get in contact with Pbc people. I still get your magazine have for years. Thanks everso, very glad of your support. Lorna.

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hi i had my txp last year... had symptomatic pbc for 19years.

i was told pre txp that the pbc is always there as it is an autoimmune disorder... it is the rate at which it fights the liver that will vary between people.

i was also told that they make no promises about the fatigue that it may remain along with other symptoms.

it probably took a long time to get to txp stage originally... so don't be too worried. you can go back on urso... ive already got it although not taking at present...

hope you are feeling okay in yourself thats the main thing.

best wishes cazer

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Hi cater, thanks for your message, I became symptomatic 4 years after diagnosis in 2001. Pretty full on for next 5 years, variscile bleeding, ascities, v low platelets etc. Relieved to be transplanted in 2010. Yes it was always at the back of my mind it might recurr with symptoms. Just got full on exhaustion at moment seems worse than first time, it may just be the shock of how my whole system feels messed up again. One day at a time, I do hope your recovering, I hope you have a wonderful time getting back to health. Lorna

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Hi Doty

I had a transplant for pbc in 2012, and was told there was a small risk of the disease becoming active again in the new liver. They didn’t give me any statistics, but my consultant said to watch for signs myself - am guessing they mean itching etc. So far I seem to be OK and was wondering how your recurrence was detected? Was it through bloods or did you have recurring previous symptoms.

I am sure you must be feeling very frustrated, am hoping you find someone else on this forum with a similar experience for support. I was told by my consultant that if it did recur in the transplanted liver, from previous experience, they felt they would be able to manage it well.

Angie x

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Hi thanks for your response, I just sent you a message God knows where it went. It took 9 years from diagnosis to transplant first time round. Last 4 years so many emergency admissions I was so glad to be transplanted. What led up to it was i think getting ill with flu, chest infection and a uti all at same time February this year. By time I went for my 6 month check up I felt exhausted with a swollen feeling around my liver as if cholestatic. They thought liver rejection, I thought pbc. The later was so. Confirmed with antibody blood test. Back on urso, pray it’s slower less aggressive this time. I wish you all the very best, enjoy life. Lorna

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Gosh it sounds like you have been on a roller coaster ride with all the infections and admissions. I really hope they can get you stabilised and it’s less aggressive this time.

Sending you my best wishes

Angie

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Thanks everso, I wish you all the best, I don’t think many of us have had it easy, you too have had your fair share. I look forward to hearing more about your journey very best Lorna.

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Hello Angie

Very pleased to hear from you and looking so well in your photo. I notice you have retired and remember you went back to work after your transplant. Would you consider sharing your experience with work and the ultimate decision to retire? I recall so enjoying your wonderful blog !

With very best wishes from Downunder

Karen

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Karaliz...haven’t seen you here in a while. Are you still participating in the OCA trial? Last you posted you were doing well & were having ultrasound.

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Hi gwillistexas - how are you?

Yes, I am on the LTSE ( long term safety extension ) arm of the OCA trial which is ongoing. Docs are not sure how long it will go for - there are only a couple of us in Australia who are part of this study and as I mentioned earlier, the drug is not available yet. Hopefully the trial will continue at least until OCA is commercially available here in Aus.

You have a good memory re the US! As my liver is cirrhotic, the 6 monthly ultrasounds are standard of care due to increased risk of liver cancer. No change in US although my liver has such a marked "heterogeneous echotexture, it can be difficult to identify new lesions" - the joys of cirrhosis !

Hope you're feeling well and OCA continues to keep you on track.

Karen

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Thank you! Yes, I have thought of you many times. Glad you’re hanging In there & continuing in the trial. I’ll keep you & your health in my prayers. Yes, thus far I am doing well. Labs July 5th. 🙏🏻🦋

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That's very kind - thank you so much.

Good luck for July 5th - I'm sure all will be well.

Karen

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You’re welcome 😉

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Hi there

So sorry for the delayed reply, hope you are keeping well?

I did go back to work, and managed really well and was quite happy but felt I had changed my life priorities after my transplant especially after being so ill beforehand. So after working for over 3 years they were offering voluntary redundancy at work. I was a lecturer and could take my pension at 55 anyway, so with one year to go ( I was 54) I decided to take the voluntary redundancy and go early as I only had a year till I could get my pension.

I have to say it’s the best decision I ever made, I was managing to work ok but it was stressful at times ( was finishing a PhD) and also I am the main carer for my elderly mother.

Now I am not as stressed, I have time to focus on me and my health, and overall I just feel so much better, happier and healthier.

Hope you are doing ok as well?

Take care xxx

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Thanks for your reply Angie. Sounds as though your decision to retire was timely and given what you have been through, the absolutely right decision. I hope your health continues to benefit.

I have significant cirrhosis and was on a downward trajectory until recruited into the OCA trial. OCA has stabilised me and bought me time which I'm very grateful for, particularly as it is not yet available here in Australia.

I work 3 long days as a nurse/case manger for one of our public hospitals.....feel exhausted most of the time but really enjoy my job, need to work financially and have a wonderful husband and 4 beautiful ( grown) children who keep me afloat !

Take care

Karen xx

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I am really pleased you are on the trial and it’s having benefits for you. If you are enjoying the work that’s great, acts as a sort of “distraction” doesn’t it when you enjoy it. Work as a health care professional can be physically and emotionally exhausting even for someone with no health issues, so you take care of yourself too. Three days sounds like a good balance.

Sending you all the best vibes across the water!

Angie x

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Thanks Angie. Yes this is my 5th year on the active drug so feel very fortunate.

How do you find the anti rejection drugs and do you find the fatigue of undergoing such an ordeal persists ? I understand if you'd rather not answer these questions.

Best to you too from the land of Oz!

Karen xx

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Hi

I don’t mind you asking at all, it’s good we can all share and learn from each other on these forums.

It took a while to get the balance of drugs right for me, WBC too low etc but seem to have a balance now as been ion the same dose for 2-3 years. One problem I do have is with my kidney function, nothing drastic that needs intervention yet but it’s at the top end of “normal range” - the tacrolimus is hard on kidney function and you are warned of this. To be honest pre Tx I was going into renal failure and in the immediate 48 hours post Tx they were worried I might need dialysis but the kidneys rallied in the end. The body is an amazing thing isn’t it, especially how much the liver effects the overall running of the body.

Other than that I have had few real issues, suppressed immune system led to a couple of nasty chest infections which cleared up with antibiotics.

Only other thing was I was told there are few “thin” patients post Tx as the meds can lead to weight gain. I have put on about a stone which I have trouble shifting. I was only on steroids (low dose) for a couple of months after so it’s not them. Guess it could be related a bit to kidney function and fluid retention? It’s not a big deal I try to eat healthily and exercise regularly, some of my friends from transplant have gained up to 3 stone so I consider myself lucky.

You take care now xx

Angie

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Thank you for sharing your story Angie. I remember your husband describing the toll your kidneys took in your blog post transplant. You sound pretty well on top of just about everything and i truly admire your attitude. Yes, I suppose fluid retention can always add a bit of weight that is not actual "weight" as such .....as you say, not really a big deal when you're doing so well.

Best wishes and thanks again

Karen xx

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Hi Lorna , I’m in a similar position to yourself I was transplanted for pbc September 2015, things have been a bit up and down health wise with one thing and another and I had a biopsy in January this year, this confirmed that I have a recurrence of pbc and I have been put back on urso not really given much advice other than hopefully it will take a long time to progress, feel free to message me anytime and take care of yourself 🌸🌸

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Thanks for your response, yes that’s about all they said to me too. I’m sorry you were rediagnosed so quickly, and I hope you don’t have too bad symptoms. They said there was no need for a biopsy as blood serum positive and that’s enough they say. I hope you too feel free to message me, I’m feeling sorry for myself on and off at mo, but I hope I get some better perspective on it soon. Take care Lorna

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Hi, Dotty I was diagnosed with PBC over twenty years ago. Always felt a fraud because I have pbc though none of the symptoms!

In twenty fourteen I was diagnosed with NASH and HCC. I only went for a liver scan (because there was nothing wrong with me!) I found out that primary liver cancer has been linked to cirrhosis.

Fortunately I was put on the tx list. Everything went well for the first twelve months! Then they found a blood disorder. Had a scan and a biopsy. Told the Pbc had returned. Don't I know it. Lethargy, dry eyes, itch has caused more problems this time, than the previous years.

The whole experience has taught me to be more proactive with my health. I'm making sure that don't need the services of another transplant team.

I've been given a gift that I want to look after.

I'm healthier now than I have been for years. I'll put up the annoying symptoms and work around.

I'm 72 and I go to the gym! At least nine times a month.

Take care

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