Post Transplant Issues

I had a liver transplant back in March 2014. Once I got over the initial pain of the operation I then developed aching in my back, sternum, rib cage and in some of my joints. The rheumatologist has said that he believes that the aching is due to trauma of the operation. Liver surgeon says it is definitely not from the operation and when I mentioned possible drug side affects he wasn't sure about that either.

I am on 6 mg of Tacrolimis and 75 mg Azathiaprine.

Has anyone suffered similar issues as this is stopping me moving on with my life - have been unable to return to work due to this issue and the fatigue it causes.

Many thanks

27 Replies

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  • I get pain in liver are and sternum. I was told probably due to adhesions for liver area. As for sternum not sure. Have other health issues too so can be difficult to know what is causing each issue. Fatigue however has increased since transplant. Had mine in 2010 acute liver failure. Hope you find solution.

  • Thanks Anita, that is the problem, we never just have one issue!!

  • Sometime after my 2006 transplant, I got some internal aches but not of a serious nature. I did ask about them at liver clinic and the doctor said that your insides are pretty much like a bomb site after a transplant and it's probably due to adhesions. Overtime, my aches have virtually disappeared. Hope that your pains resolve soon.

  • Thanks Peter, how long did it take for your aches to go?

  • Hi Catseye

    Well sorry to hear this but my husband is in exactly the same boat. Transplant Dec 11 joint issues ever since. I think he has been unlucky because he has developed lots of problems since the TP. We have to go to Dermatology, Rheumatology, Spinal Consultant.Respiratory . Kidneys have never been A1 since.

    One diagnosis for the ankle pain, another one for his knees and yet another for his neck and shoulders. I don't buy this. All tests for inflammatory diseases are negative. But neither of us getting full nights sleep at present as the pains wake him in the night.

    He also had several visits to have a stent fitted in his bile duct for 18 months after the TP and had 6 bouts of sepsis. These were after his TP and again after the operation to repair the hernias caused by the Liver Surgery

    It's almost like when a car has a new part the strain of a good part against the wearing bits causes strain

    of some kind. But all you get is "Well you are still here"

    What was your reason for the TP. Mikes was Alpha 1 Anti Trypsin Deficiency and I firmly believe that all his problems probably relate from that rather than the TP.

    But I don't think we will ever get to the bottom of all these issues

  • Hi Carmik, thanks for your reply, really sorry to hear of all the issues your husband has. My reasons for TP was that I have always had polycystic kidney disease but a couple of years ago, my liver started to develop cysts and increased rapidly in size from a normal liver to a huge size, it pushed up my diaphragm and one of my lungs, it also grew down to my hips and just kept growing (it was 18 pounds in weight when they removed it). So mine was a mechanical issue rather than the liver function. I think it is the drugs myself but the doctors don't know and I am not sure they will ever know.

    Regards

    Rachel

  • Hope things get better for you both. I too have had serious complications after liver transplant. It has always been hard to get a straight answer from TP doctors. But liver function tests show serious decline in liver function. And you're right, I hear "Well, you're alive?" alot. Well, yes, I am, however, additional meds, additional costs, and lack of support from medical community (on top of feeling like crap - nausea) has seriously compromised quality of life. Hope things will improve for your husband.

  • Those of us with AIH who are on immunosuppressants like Aza also suffer joint pain. Nobody really knows if its the Autoimmune condition or the meds.

  • Thanks Bolly

  • Right. Two years after a liver transplant in 2011 for Chronic Hep B, my liver function tests (required monthly) showed extreme malfunction of new liver and I was told after a battery of tests, that my new liver was cirrhotic - for some unknown reason, I developed Autoimmune Hepatitis after the transplant and am being treated with 75 mg azathioprine and 20 mg prednisone for the AIH, along with 6 mgs tacrolimus daily. I suffer joint pain since the AIH diagnosis, and I do remember back pain right after the transplant. The doctors did not take that complaint seriously, but I do think that tacrolimus and the transplant itself are the reason. It can be very difficult to determine what is causing what...is it the de novo AIH, or the meds, or the trauma of transplant or all those "playing out itself"? I have found transplant to be very difficult. 3+ years later, I feel worse than I ever have. Transplant doctors (here in the US) are not always reassuring. I am now being told the Hep B has recurred. They have insisted on re-transplant, but that offer was retracted later. I had to stop trying to figure it all out.

  • Just a quick question Lola as I have Hep B. Why has the Hep B recurred, were you not put on medication to suppress the Hep B post transplant?

  • Yes, I remained on entecavir and received HbIg infusions for year. Pre-tx, I signed a form which would, the drs. said, widen the liver/graft pool for me, as it authorized allowing a donor organ that had been exposed to Hep B virus at a low level. Since, the Hep B virus will never go away for me anyway, it made sense. 2 years post-tx (tx was in 2011), I had complications which they diagnosed as AIH. I was informed of the Hep B recurrence this past week, but my medical record said it was detected in 2013. So, to answer your question, I really don't know what's going on. My ALT/AST are 114/192, my GGT is 1018 and my alkaline phosphatase is 216. Thanks for asking.

  • If the entecavir is not keeping the Hep B undetectable then you could ask whether you can switch to one of the newer drugs. Are you saying that you stopped taking the entecavir in 2013? Once on Hep B meds you can NEVER stop taking them, not even for a day, or the virus will come back. I'm on Viread/Tenofovir and it keeps my Hep B undetectable. I also have AIH. Unfortunately the treatment for AIH which is to keep you immunosuppressed means that the Hep B is able to multiply again, which is why you must have effective medication for the Hep B at the same time as you are on meds for the AIH. Your liver enzymes are quite high, sometimes the meds for the AIH can cause that, which medication are you on for AIH and how long have you been on medication for it.

  • The transplant drs. took me off entecavir w/in 1 yr of transplant. 2 yrs post tx, when liver enzymes soared to 400/500, they said I had AIH and put me on azathioprine and prednisone. Now, in 2015, they are doing Hep B antigen/antibody/DNA tests. Those meds, along with tacrolimus (which they keep increasing) and ursodiol are all they have me on. Thanks for the info and help. I think I have a clearer sense of what's going on. They claim to be "baffled" by what's going on...I'm an "enigma" they say. What I do know for sure is my new liver is terrifically damaged and the damage is continuing.

  • I'm baffled why you were taken off entecavir. I understand that your transplanted liver was free of the HBV virus, but your blood and other body cells were not. Hep B can NEVER be cleared from the body, there is no treatment that can do that. All the meds do is stop the viral cells multiplying and keep the virus at a level where it cant do serious damage to your liver. I would have thought you should have been put straight back on entecavir (or a different Hep B) med, as soon after the transplant as you were well enough. No wonder the virus is back. Azathioprine will have suppressed your natural immune system, and the Hep B virus will say 'whoopee, fantastic, I can multiply like mad as this patient has no natural immune system to stop my viral cells multiplying'. I'm on BOTH Tenofovir (for the Hep B) and Aza for the AIH, (was on prednisone but came off that once enzyme levels stabilised) and will be on both for life. Tacrolimus will suppress the AIH, so you should be able to be on that (no Aza needed while on Tac) and a medication for the Hep B. I would avoid going back on entecavir but ask to be put on a different one, once you stop a Hep B med its not good to start again on the same one.

  • Thank you, Bolly. The decision to stop the entecavir was not a good one. I will pursue the route you suggest.

  • I can't understand how doctors who have the knowledge to give you a liver transplant seem to not understand how to treat Hepatitis B! It used to be that if the viral load was below 3,000 units then the protocol was don't treat. I fell in to that category and was not treated and so got liver cancer. Now the protocol (in the UK anyway) is treat everyone. It's such a waste of a liver donation, to let it be destroyed so quickly by a virus that an be suppressed by one tablet a day!

  • The transplant doctors took me off treatment for the Hep B despite admonitions not to do so from my gastroenterologist. It certainly wouldn't have hurt for me to continue to take the entecavir. It certainly did hurt to take me off it, and now I really think they're trying to cover their arses.

  • Hi

    I had a liver tx August 2014. I have aching joints. My back and knee are the worst. Also have a problem with colds and urine infections. I have been told that it's my meds controlling my immune system. My med are changed on a monthly basis.

    I have returned to work part time, I want to do more, but my body won't allow it yet.

    Do you have problems sleeping at night

    Lovely to hear from you

    Michelle x

  • Hi Michelle, thanks for your reply, that's my thoughts as the aching developed a few months after my TP enough time for the drugs to build up and cause issues. I do have issues at night but only occasionally. I have been told by our company's occupational health doctor that I will only be able to work part time in the future and in his opinion I can't work at all at the moment.

    Do you take any painkillers for the aching?

    Rachel x

  • Hi Sarah

    I take Paracetamol occasionally. I start Yoga on Monday, I'm hoping that may help

    I work 18 hours per week, I do find it takes your mind off your aches and pains. It gives you something else to think about

    I think I thought I would be back to normal by now. Perhaps Im a little impatient

    Michelle x

  • Thanks Michelle x

  • Dear Catseye123,

    I was sorry to learn that you're suffering from post-transplant discomfort, it must be so frustrating for you!

    I'm sure you've found all of the comments above most helpful, and no doubt you will receive plenty more!

    If there is anything I can do to help support you, then please don't hesitate in contacting me either via email or HealthUnlocked, OR the Helpline number (please see contact details at the bottom). In the meantime, very best wishes to you and I do sincerely hope that your symptoms will improve.

    Also, just to let you know, I've recently put a 'Post' on the Liver4Life community, in the hope that we'll receive some responses.....I thought it might be of interest to you, and of course anyone else here on HealthUnlocked.

    This is what I've written:

    Hi everyone……could I ask for your assistance please? We have been approached by Astellas to reach out to people who have had a liver transplant, to share their story. This would coincide with data that is being published by the European Liver Transplant Register. The data is likely to be about how a 'ONCE a day' pill is the same, or slightly better, than taking an immuno-suppressant TWICE a day.

    At this stage, we are just collating details of people who are interested and willing to share their story with the media.

    Therefore, I’d be very grateful if you could email me with brief details of your story, and also if you could let me know:

    1. the name of the anti-rejection medicine you are on

    2. your age

    3. what life is like now, post-transplant

    4. how receiving a new liver has affected your life

    5. medications that you still need to take

    6. the impact it has had on your friends and family

    7. your location in the UK

    8. your availability during the second week in February.

    As you may already be aware, Astellas are the leading manufacturers of liver transplantation anti-rejection treatment. Their medicine is tacrolimus, which is also known as either ‘Prograf ’or ‘Advagraf’ - Prograf is taken twice a day, and Advagraf is taken only once a day. They will be conducting the media outreach around the new data.

    I will look forward to hearing from you, and whether you would like to help us with this.

    Please email me at: sarah.tattersall@Liver4Life.org.uk

    Many thanks as always,

    Sarah

    Helpline Manager

    Liver4Life

    Helpline: 08000 74 34 94 (Mon to Fri, 10am - 3pm)

    Liver4Life.org.uk

  • Hi my sister had her liver transplant 9th March 2014 .( she had been in hospital since ( feb 14) She only came home CHRISTMAS eve . Was on ICU nearly 6 months over the 11 months in hospital , every thing that could have gone wrong did she was on life support 3 times , she had internal bleed twice so needed stents , phnomia numerous times , pancrotitus , heart failer 3 times , pacemaker fitted , fungus , sepsis 11times, dialysis nearly the whole time she spent in hospital ,and ended up having kidney stones that needed a stent in , TPN feed, she needs a hystorctomy but can not have it done ,as her womb is stuck to other organs ,plus other things went wrong , a stroke down her left side , in October she had a bowl op as she had chroans 29 years that was stopping her from getting better so it was decided she needed a op, 6 1/2 hours later all we was told was she was alive !!!! , she has ended up with a stoma , something she has dreaded for 29 years, 10 days after her op while still in ICU she developed 2 fistulas ,which held her back and was very ill again ,her stoma didn't work for the first 4 weeks , we had been taken into the family room 7 times to be told Dr's didn't think she would make it , but thankfully we know have her home , she is learning to walk again , she is now off TPN and eating more than she has ever eaten , she still has fistulas that can take months if not longer to heal infact she has 7 holes along her scar , the district nurse comes everyday to clean and dress it, and will need To go back in hospital for a little op to clean her wounds out , but she is alive, she still gets lots of aches and pains the drugs do this to her ,all her joints hurt , plus we was told she now has cataracts in both eyes

    Dr said this was brought on by lots of trauma , my sister has been called a mirical and a legend ,by the whole medical team and will give so many patents hope all I say is NEVER give up hope xxx

  • Hi Karlacairns, oh my goodness what a year you have had, must have been an extremely worrying time for you all. I am so pleased for you and your sister that she is now home. I do hope that things improve and thank you for your message xxx

  • Help!!!...Liver transplant July 1 2015....kidneys and lungs shut down...had complications after transplant...post 8 months....belly is swollen in the uppermost part of my abdomen...pain swelling nerve pain the whole Mercedes sign hurts....developed Staph after my staples were taken out. ..had to have my wound debrided. ..4 weeks after transplant....had an umbilical hernia repair nov 21 2015 without mesh....with sutures. ..MRI jus showed that I have another hernia...help what can be causing my body to feel like two seperate body....like I have a cutting feeling...pain 24/7...my incision did have to be packed because it didnt heal properly. ..and had to heal from the inside out....please help if u experience the tightness pressure big belly

  • Northoakgirl it might help if you started a new thread with this post as with your comment being at the bottom of a thread that is over a year old it may not get the support you are hoping for.

    Just click on the green "write a post" button at the top right of the screen.

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