Post transplant questions

GWTWfan,
Welcome to the forum! I'm sure someone with transplant experience will be along shortly. You can check the resource folders to see if there might be something there or search the site for gurgling...maybe someone else has had it. Maybe it's some trapped air from the surgery? I dunno but I hope you figure it out so you don't worry.

As per high lab, it's good it's heading down. How high is high?

Hi GWTWfan! Welcome to HW/Hep and congratulations on your successful transplant! Although I have not had a liver transplant, I was caregiver to my fiance. So funny that you asked about a 'gurgling' feeling - Robert described the exact same thing. At the moment, I can't remember what his doctor said but I always wrote down any questions/answers we had, so I'll try to find where I wrote the answer to this one! Lol I want to say that it had something to do with the size of his donor liver (it was a large one), but I'm just not sure. I do know that it was nothing bad.

As for one of your enzymes being elevated, which one was it? It's normal for your various labs to fluctuate a bit, and the fact that it's already improving is good. Many things can affect certain lab results - something you ate, OTC medications, even stress. And usually, just one elevated enzyme doesn't mean something is going wrong. It sounds like your team is on top of it, so I wouldn't worry too much. I always say, "don't worry about something until you have something to worry about"!

And again, Welcome!

If you'd like to get the website of a good transplant forum, email me and I'll give you the address. There are more people there with transplants and they might be able to answer some of your questions.

Wow! First time I asked questions and so many kind people responded! I am surprised and grateful! Already my fears have lessened. I wish I would have joined immediately after surgery, as I see so many of you have experienced the same; but more importantly, what a huge support system you all are!! Thank you all for the encouragement regarding the elevated enzymes. Just a few weeks ago at my 9 mo. check up my doctor said my new liver was very happy in its new home. So the news things weren't quite right threw me for a loop. And, Splashdancer, thank you, it's so nice to know someone else in this world experienced the gurgling. Do you remember how long it lasted for Robert? The reason my doctor had the chest x-ray done was that I experienced it after some stretching of those muscles, but only with my breathing. Holding my breath would stop it. And the nurse wasn't specific as far as which enzyme was elevated. Excuse me for not knowing more. David, thank you for the phantom pain suggestion. I do wonder why at close to a year out I am still getting that kind of "stitch" pain. DGinSD, I believe the enzyme level was up to 100 and dropped to 70 when I had blood work done again. I believe the RN told me my last score of 50 was a "high normal." Worried daughter, I had just graduated to getting my blood drawn only once a month when this occurred. Tomorrow I'll be getting it drawn again for the 3rd time in a week. Yes, I am pleased the liver team stays on top of it. The hospital where I had the transplant surgery is well known for their outstanding post-surgery care. Themiz, prayers are being said for your husband. The transplant has been life changing for me, as I feel healthier than I have in a very long time. All my blessings to all of you for your kind words. Gratefully, GWTWfan

Hi again, GWTWfan! Although it wasn't as frequent as it was at first, he was still experiencing some 'gurgling' every so often up until he passed away on Feb.11th of this year. His transplant was on 11/04/2012. I'm still looking for where I wrote down what it was! But like I said, it wasn't anything bad - so please don't worry. I'm almost positive it had to do with the size of his new liver and air sometimes getting trapped when he moved certain ways. He also had a 'stitch' feeling and I'm not sure if the explanation was for that, or for the 'gurgling' - it may have been the explanation for both. In fact I think it might have been. See, Robert was a bit of a hypochondriac prior to his diagnosis, so during his illness and especially after his transplant, I was calling/emailing his TX team quite a bit with questions about all sorts of things - gurgling, pain, stitches, itches, aches, 'weird feelings', etc.. So I've got hundreds of little notes. Oh how he drove us all batty! Miss him lots.

I too am a GWTW fan :)

I'm sure Splash will track down the answer to your question as it's a new one on me. Best of luck to you and welcome to the forum!

Mae

Welcome GWTWfan,

I am 9 months post tx.

I have not had the raspy or gurgling feeling you mentioned.

My enzymes shot up in mid March one month after I was taken off Valcyte. I was exposed to CMV by my donor and came down with CMV hepatitis diagnosed by biopsy. My enzymes soared to nearly 300. Went back on double dose of Valcyte until mid April and now on 900 mg until end of July. Enzymes are now about 40.

I was told the other possible causes of my elevated enzymes were rejection and denovo autoimmune hepatitis. Biopsy showed CMV.

Again, welcome!

Susie

Hi again, GWTWfan! And Ziff, thank you for your kind words. To be honest, at first I wasn't sure if I'd be able to continue posting here - the pain of Robert's death was so deep and all-consuming. I really didn't know if I wanted, or could handle, reading about successful transplants and treatments. But then I realized that maybe it would help me to hear about other people kicking liver disease's arse. And it does. Yes, I wish Robert had beaten this evil, nasty disease - he came so close and been through so much - he DESERVED to beat it. But so many others deserve it too - and I need to do what I can to support them. And it's not just for me, I feel I owe it to Robert too - if that makes any sense. Ok, enough of that!

Alright GWTW, I found my notes (it was actually in an email). We were told that there might have been a little bit of fluid back there and/or it could have been from the fact that his new liver was larger than his own was. There also could have been some air getting trapped and movement was 'stirring things up'. Shortly after he mentioned the gurgling, he had a CT and and U/S - nothing was found. And this all began way before he got sick again - it had nothing to do with his recurrent illness. Well, hope that helps!

I don't want you to feel scared because of what happened to Robert - please don't. I'll briefly explain what happened with him - maybe it will help ease your mind. Robert had cirrhosis, HCC, and HepC. He received his new liver on 11/04/2012. He had several good months (2 very good months), but then the HepC returned fairly quickly and became VERY aggressive (not all strains do this). In September 2013, his doctors gave him 6 months. He was denied the opportunity of a 2nd transplant and subsequent treatment with the new meds (something I will never forgive TGH for, nor forget - but that's a whole other story). On Jan.31 he fell into a coma, in total renal failure. He was in a coma for 11 days and died on Feb.11. He was a wonderful, loving man - for 15 years we were lovers and best friends - I will miss him forever.

What happened to Robert was not the 'norm' and he could have been saved. Most transplant recipients do very well - I bet you'll be one of them!

I am happy to report my enzymes are once again in the normal range. I, of course, am very relieved. I am very grateful for those of you who were so encouraging. It really did help. Once again, Splashdancer, I am so sorry. I can't imagine going through all one must go through getting a transplant and not having better recovery. I cannot understand either why your partner was not allowed a second. Although personally, I'm not quite sure I'd want to go through it again. I'm sure you're grateful for the time you had together. And Deb, thanks for the welcome. And GWTW is a reference to Gone with the Wind. I have been a fan since I was a kid. My mom took me to the movie and I subsequently read the book when I was 12, reading it in 5 days. I later was an English major and Language Arts teacher. And I'm super fond of old movies.

Thanks again for lifting my spirits when they were low. Like "Annie" said, "I know I'm going to like it here!"

I'm so glad to hear that your labs are back to normal - I figured they would be! It's 'funny' that you mentioned not being sure if you'd want to do it all over again. For the longest time, Robert said that he wouldn't do it again. It wasn't until his doctors gave him 'the news' that he changed his mind. The thought of another transplant didn't exactly fill him with joy, but his will (his need) to live trumped his fears. And yes, I am deeply grateful for the time we did have - and to the anonymous hero who gave us an extra year and 2 months together.

Thank you for your condolences - they are very appreciated. And like I said, please don't let what happened to him cause you any fears. Robert got a raw deal (as did our beautiful Connie here on HW) and there is more to his story. It was a series of medical circumstances, in addition to a TX team that gave up on him much too soon. It sounds like you have a great team behind you - my money is on a long, healthy life for you.

GWTW...it sounds like you and my mom are going thru the exact same thing at the same time. She too will be scheduled for a biopsy if the enzymes continue to increase to rule out rejection. I think it's a good idea for you to exercise... Very good in many ways. However, I would be careful with the gardening. Our transplant team does not want their patients to garden ( play in the dirt ) until a year + post transplant. I think because the dirt has lots of germs as well as you need to be careful with sun exposure ( make sure to wear SPF) and bug bites. I assume that each transplant center has different protocols post transplant. Sounds like things are going very well for you.

Thank you WD. I hope your mom's biopsy is clear! It sounds like from what I've read and heard, the enzymes do bounce around quite a bit. But I do know how worrisome it can be. And more great info, Splashdancer! I did not know that. I will most definitely check that out.