Liver Transplant - 2 Years On

Liver Transplant - 2 Years On

New to the site & only found it because I was looking for some travel advice (found that ). I had my transplant on 18 Aug 2014 and am now feeling a whole lot better than I did before the op. The first year was 'different' - taking all those medications, keeping a close eye on diet and coping with a huge scar which has now sorted itself out. Today, I'm 4 stone lighter than I was at the time of the op mainly due to exercising daily and eating healthy. When I left King's for the 1st year I was back on a regular basis which was very time consuming because I live in Christchurch (7 hour round trip). That was altered so that I could be monitored by Bournemouth Hospital (1 hour including waiting time!). Liver-wise I haven't had many problems since the transplant and I changed meds last year from Prograf to Advagraf. Started off at 4 mg of Prograf twice a day and now on Img Advagraf once a day (since Nov). The biggest problem I had was with Prograf side effect (ankle swelling). No adverse reaction to the Advagraf

I thought I'd join this site just to offer my info and any advice if anyone needs it. My problem was with jaundice, cirrhosis and a couple of small black spots on the liver; then a 3-week stay in Todd Ward fixed that! The cause of the disease wasn't alcohol although that is the first thing that comes to mind when people find out you've had the transplant. I got told by experts that I didn't drink enough to cause it! That keeps me happy. However, it has made me think a lot more about drinking. I've not had a pint since 6 months before the transplant. I can still go to the pub but not for too long - there's only so much Coke you can take.

26 Replies

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  • Hi there

    Well done for doing so well. My husband is nearly 5 years post transplant but had and still is getting lots of issues. We are in the process of arranging to see an autoimmune specialist.

    Did nobody actually diagnose why your liver gave up?

    Most unusual if not as there are lots of reasons and it should be discovered in case it is something that could recur.

  • Hello,

    No I've never been told what caused the problem - except that it definitely wasn't alcohol. I haven't had any info about the cancer in the old liver either. All I know was that I had 2 spots identified by CT which had grown (minimally) over a year. I can only say that I'm lucky not to have had any serious post-op problems.

  • Hi Buck, nice to meet you. I'm coming up to my 2nd anniversary in November. I also went to Kings and stayed on the Todd Ward and live in Bournemouth. I still go up there for my consultations, however I think that's probably because I signed up for a research program, and got a few extra drugs at the time of transplant (ATG en.wikipedia.org/wiki/Anti-... and some new T-Cell Therapy. So I gave up the prograf altogether, and I'm on 1mg/2mg of sirolimus alternatively once a day.

    I did also see Dr Al Shamar at Bournemouth but I think he's gone now.

    Like you mine wasn't alcohol, and after transplant they examined and did various tests with no solid outcomes. It'll always be a mystery I suppose.

  • Hello Joe, I think the only reason I was passed to Bournemouth was because of the travelling distance and that my results of scans, blood tests etc were all well over the first year. I was put on Advagraf by Dr Alluvihare at King's and I'm pretty sure that was in the early days of the drug. It's slow release so you only have to take it once a day instead of twice. I last saw Dr Al Sh back at the beginning of June so I don't know if he's still there or not but his staff there and the rest of the doctors are very good. Find out next month after I've had another CT scan. Last one was ultrasound about 5 months ago.

  • its just good to hear that your feeling a whole let better. makes my day to hear this. love grace xoxoxo

  • Great to hear good news from people post transplant. We have a lot to be grateful for.

  • Found this very interesting as husband about to be listed and so good to hear stories pre and post transplant 😀

  • Katherine, that's why I posted in the first place. Anything you're uncertain about - always ask the consultants. They are excellent and treat you as a friend rather than a patient. Better to know what's going on than wondering all the time. My wife has a list of the do's and don'ts and she makes very sure I keep to them.

  • Great to hear, make sure they've checked you for Haemochromatosis (iron overload), there are still many Drs not testing for this, it's massively underdiagnosed and will continue to attack your Liver if untreated (it is treatbale fortunately). It's beneficial to be proactive and check what bloods have be run, I learnt the hard way!! Best Wishes!!

  • Thanks Tommy, I've had more blood tests than you can shake a big stick at and no signs of iron overload. They did pick up a Mg definciency initially.

  • Good, I hope it's just one of them rare anomalies with your original liver and that you have a great future with your new one

  • pubs are pretty boring on coke indeed, also it makes me glad im not drinking when all my friends start to get drunk and act like kids, watching people get wasted when you are sober is a real eye opener!

  • I know what you mean but the alternative is staying away from all the people you know socially and that's definitely not a good thing. What you need to think is that they would still have been drunk had you been drinking so your stopping would have no effect on them - only you if you let it. You can still have fun and a social life without the alcohol. The only difference is that you can see what's going on when you're sober!

  • We have just learned this week that my husband has Cirrhosis of the liver, stage 4, cause is iron overload (hemochromatosis). His symptoms began in June. Stomach pain so bad he went to the ER. Since then he had to go down the list of different procedures. This week we received the liver biopsy results. We don't know anything other than reading online sites like Mayo Clinic & Web MD.

    He is tired, sometimes nausea and a lot of times diarrhea. From reading it says that at this stage transplant is the only option. So given that right now he is still functioning quite well, is it not possible to repair itself at all by eating well, meds, etc? His Appt is Tues but we would appreciate any info you can provide.

  • Good luck, let me know if you have any questions regarding Hemochromatosis, there's a great UK Society Fbook resource with about 3k members.

  • Apologies if I'm not permitted to reference other sites.

  • Probably a bit late with this but I'd just say that, unlike your husband, I never had any painful symptoms and the problems were only picked up from an annual 'well-man' check-up at the doctor's. Apparently I looked jaundiced so they sent me off for a blood test and that's where it all started.

  • Hi Buck

    I also live in Christchurch & was listed 6 weeks ago at Kings due to NASH cirrhosis possibly linked to having one haemochromatosis gene.

    Saw Dr. Al Shaama last week so is definitely still there.

    I will send you a message if OK since we know each other...small world!!!

  • Please do, thanks for the info on the doc - very re-assuring.

  • Likewise I have never learned how and why I ended up with cirrhosis and needed a transplant. Great to hear how well you are doing.

    Rather amusingly your post has been tagged "cocaine" presumable because of your reference to "coke in the pub"!

  • Maybe I should have spelt it with a capital C! It's down to the way people think these days I suppose.

  • well done. I've been switched to Advagraf due to my kidney function. Find less side effects. I just take 2 tablets in the morning. So much more gentle. Great to see you looking so well 😁

  • Hi Sherri, I found that any problems I had with the kidneys were removed when I switched to Advagraf,

    .

  • so far so good for me too. They did say that adaport was causing kidney problems with me too. After my transplant they shut down and i had to have dialyses for 4 days

  • Hi Sherri, I had 2 days of that immediately after the transplant but haven't had any problems at all since changing to the Advagraf. CT scan last Sat, waiting for next check-up appt.

  • best of luck to you. 🍀 🌠

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