Liver transplant - Let's support each other

@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?

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 .

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..

@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.

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!

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…

@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 ?

I just joined this group too. Congratulations on your transplant! I can certainly relate to the conflict of being grateful to be alive and well, but in despair at times that recovery can be slow and long. For me it’s easier now with better weather. I had my liver transplant 7 months ago and have had no big complication aside from a hospital admission for stomach flu dehydration. My liver disease wasn’t alcohol related, but I don’t see myself ever drinking alcohol again. Everyone is different. I’m more aware now how so much out there is very alcohol focused. I also feel- as I’m working to improve stamina and strength, drinking would slow me down. I understand completely feeling sensitive about people’s response to what you share. Right after transplant, when Omicron was raging and I had to wait 3 months to be boosted, I called myself The Bubble Girl Whose Ready To Pop. It can be so hard, even though your life has been saved.

This is my first time posting, I wasn’t ready for many reasons to talk about my transplant. I received a liver during the pandemic, in August of 2020. It was an emergency surgery that I was flown to Mayo and received because what they thought could turn around, didn’t. I was very healthy very active, rarely ever sick and one day they thought I had lime disease the next thing I know I was moved to the top of the list and given 24 hrs to get a liver! They still don’t know what caused mine to fail and may never know. Anyone else have this happen? I go through stages of anger for feeling guilty for feeling bad for myself to rejoicing that I’m here for my family! Question, it will be 2 years in August for me, when do blood draws slow to less than once a month? Tac and cellcept goes down or away? I had CMV and rejection, but in my head it never goes away…thoughts on alcohol?? Mine didn’t fail from it and really miss my margaritas,,, then the guilt comes in for even thinking I wanted to feel normal again and enjoy happy hour!! Ugh…anyone else feel like the boy in the bubble some days?? Thought…be nice…still sensitive to criticism…. Thanks….

Thank you Rosemary and congratulations on your 13th anniversary. It gives us newbies tremendous hope for the future.
SSC is very rare because most people don’t survive the organ failure. I was one of the lucky ones. My team at MGH said it was because my heart was so strong.
Thanks for the links to those 2 sites. I will check them out.
I will have my 4 month checkup at the end of June. Then I expect that the Docs will start to wean me off some of the drugs I’m taking so I can be on a long-term maintenance program.
Gerry