Liver transplant - Let's support each other

@goatgirl - I had the same thing happen to my kidneys while I was waiting for a liver transplant. They failed suddenly and the diagnosis was hepatorenal failure. I spent 5 days in ICU before I was stable enough to be accepted and flown to Mayo Rochester for possible cholangiocarcinoma diagnosis. I needed dialysis until I transplanted a liver and a kidney in April 2009.
Your blood draws will gradually be spaced farther apart. I have my labs every 3 months, and my immunosuppressant meds are at a lower level than they were earlier. Your doctors will be closely following your labs and your Tacrolimus level. The goal is to have a level that is high enough to protect your new liver from trejection, but not high enough to be toxic. It is a delicate balance. I also take cellcept, and it is measured with labs diring my annual evaluation. Immunosuppressant (antirejection) meds are to be taken for life.

I understand your anger, and your feeling guilty with anger, and your rejoicing. Believe me when I say that anything is possible as a reaction. It is possible that some of the feeling are magnified by medications. It is okay to mention this to your transplant team for their opinion.
Alcohol is a 'No' for liver transploant recipients. I have adjusted, although I do miss a cold beer with pizza! And I am the gal who has iced tea at a wine pairing dinner.

I'm happy that you have joined Connect. I hope that my brief message brings some comfort. What are some of the normal things that you used to do ?

Thank you for all the information on what to expect going forward. My family owns a very busy Swedish restaurant and bar and retail stores, I also own a small vacation resort,,,going on buying trips take all the energy I have, had trouble going all day to showrooms, I have cleaned solo for 22 years a house, suite and two cottages, can no longer do the house, just no strength, and working at the bar has left my anxiety around crowds now making me anti social where it was what I looked forward to doing every weekend! I ran 5k and 1/2 marathons, I now walk a 5k but hurt the next day…my boys are grown so thank goodness I don’t have little ones that I have to try and keep up to….I know it’s only been almost 2 years but life as I knew it will probably never return and this gets me depressed every time I think about it. Thanks for asking and listening…I don’t know if I’m the only one whose having trouble adjusting but I feel like I am…

I echo all that has been mentioned already. Very good points and perspectives.
I would like to weigh in on the alcohol discussion. As it is timely. I am having lunch with 3 girlfriends today. We’re all 50 something. We all used to enjoy our wine, beer , cocktails, etc. Now 3 of the 4 of us cannot drink due to medical issues (post transplant, diabetes and liver issue). My one friend has been trying several non-alcoholic wines and today is bringing several for us to sample. She’s also doing weight watchers so they are primarily low in sugar too. We’re excited to try these new beverages and looking forward to being able to have something in our hand at social events, besides water, tea or pop. There is a big movement in the non alcoholic beverage space for various reasons, but mostly medical. With the internet it is easy to research and find options. Good luck!

@jackiez, enjoy your lunch and beverage sampling with your girlfriends! That is a fantastic idea.
I will be having lunch with my 3 girlfriends later this month. When we celebrated our one friend’s engagement a few years ago, I notified the restaurant in advance and requested non-alcoholic champagne for our group. All of them appreciated my idea!

I think that you are on to something.

Yes, we have introduced many non alcoholic beverages, wine, beer, and cocktails to our menu at our bar and they are quite popular,,, pregnant women or as you said many medications. My liver did not fail because of alcohol so that is why it’s hard to hear what I do about not being able to ever have any… still adjusting..

I am a post liver transplant 1.5 years , it’s been difficult my liver is doing great most of my problems are caused by the medications . I have chronic kidney disease from my elevated blood pressure and my prograf. And osteopenia from prograf and stage 1 blood pressure from prograf I am on 3 mg in the am and 3 mg in the pm I have developed a bulge above my liver which is tender and I swell up in the evening in that area with fluid. When I wake up in the morning I am fine except I have to make at least 4 trips a night to eliminate fluid. Is anyone else having this issue .? I went to my new doctor he has recommended an mri . We will see .

@mggggrossman, Welcome to Connect and congratulations on your almost recent transplant. I also have a liver (and a kidney) I am 13 years post transplant.
You mentioned that your liver is doing well and that is so very good to hear! In spite of the difficulties that you are experiencing, you must be taking good care of your new liver. 🤍
It is true that our medications do come with a lengthy list of side effects, and each of us will likely have a different experience based on our own body's response (along with all of those medical things that I entrust to my doctors). To counteract my blood pressure, I take blood pressure meds that are monitored by my local Primary Care Doctor with the approval of my transplant team. My osteopoenia is checked every 2 years as part of my annual evaluation, and I have been directed to take calcium and to get exercise. Are your doctors monitoring your bone density, blood pressure and your kidney disease?
What do they say about the cause of the abdominal swelling? When will you have the MRI?

My husband is still in the evaluations process so he is not on the "list" for a liver transplant yet. What he is struggling with lately is fluid build up in his legs and hands. If he gets a scratch or any kind of puncture it leaks clear fluid. He has had a paracentesis and that helped for his belly swelling and we are actively involved with the team and coordinator but I would like to know if others have this problem pretransplant.

@gammie8 I had a lot of swelling and fluid build up pre-transplant. It was very uncomfortable. One two occasions it was "weeping." I never had fluid in my belly but mostly in my legs, ankles and feet. I could only fit into one pair of my sandals, and wore pants with elastic waists and dresses that were flowy. It was hard to move, though moving was one way to get rid of fluid. I took different diuretics at high doses but they had to be cautious to not disrupt electrolytes. It helped when I elevated my feet and legs while lying flat on my bed with a bunch of pillows so legs/feet were higher than my heart -- 30 minutes twice each day. I ate VERY little salt. But I was frustrated. After my transplant surgery, I lost all of the water within about 2 months - over 60 pounds. That is a lot for my small frame. I know how hard it is to manage all of that retained fluid. It will eventually come off. Though when I was pre-transplant people told me that and I didn't believe them! Best of care to you and your husband.

Thank you so much for replying. I read it to my husband because he needed to know from someone who has been through it and it gave him more hope for the outcome. Thanks again!