What do you order when eating at a restaurant?

Hey Mike, certainly the meds are an adjustment. But peoples experience after their transplant vary widely. I’ve got autoimmune diseases causing additional health issues, but my liver is doing great!

The best thing I’d recommend, and certainly wish I’d found Connect before my transplant, is to read the various discussions. They can help you prepare for your journey. Stay positive, eat well, walk and/or exercise, and do whatever your transplant team recommends!

My transplant team asked us to put together mentoring tips on “what we wished we had known prior to our transplant.” I attach mine for your edification… Athena

Wow that's incredible, I am sure the pain really sucked through all that , Question how long were you in there before you went home ? I think my biggest worries is all the other stuff that's screwed up , my back is a disaster , frost bite in my hands , 13 broken bones in my right foot , sciatic nerve that that ruins my life , I run a horse ranch and try and work everyday but not sure can keep up with it , my feeling if I can't work I am dead ! Sorry to vent on you , that was great reading . Thank you Mike

I was in the hospital three weeks for upper GI bleeds and having the TIPs procedure to shunt my blood away from my esophagus. And, out of work for a week. I continued to work full time the next seven months, about a year after being diagnosed with Stage 3 liver cirrhosis. Then I got too ill and went to part time.

I was very blessed to receive my liver transplant a couple weeks later. I was in the hospital a month and a week, but I had a very bad reaction to prednisone, which caused additional complications. I also wasn’t getting enough protein, so had to be on a feeding tube. I had issues with ascites and I developed an infection. Then, stayed at a friends for two weeks as I live alone and they won’t release you unless you have some support.

But, again, the post transplant experience varies widely. Just try to stay as healthy as possible now. And, you would be wise to plan on training someone to manage your horse farm while you’re in the hospital and recovery.

There’s a tremendous amount to deal with beyond being sick, unfortunately. As I was rapidly declining in health and Covid was slowing down the whole transplant process I had to get a trust, medical papers in order, plan on what to do with my dog, condo, etc, And, since I was the only one who could do my job, my employer was amazing to keep me on staff until after my surgery. But, then I had to resign so they could hire a replacement.

But, I’m alive. And, while it was often a great struggle and it wasn’t always easy to stay positive through the last two years, I didn’t give up and I’m so very grateful that I made it!

Wow you have been to hell and back , that's hard for me to even imagine, my esophagus blew in 2018 and they put rubber bands around it to create scar tissue , so I guess I am lucky that nothing has happened since . I was in hospital for a week and was going nuts , your a brave human not sure I can do that . Yes I have my trust all done that was a worry to me , and I own the horse farm not even sure where to go with that , I don't have any family so makes it tough , thank you so much for sharing that , very brave ! Mike

I have great respect for the bravery of anyone with chronic health issues. You too are brave Mike, you’ve been struggling for several years now. Not having family around does, I think, add to the complications. It was tough and definitely isolating to be sick and living alone. My friends were great, but they had their family and jobs to get to. There’s a lot of guilt one feels though, burdening others, regardless of who you have as your caregivers. So, onward and be strong!

You are so right that's why I can't make a decision to try and go ahead or just let things happen , little things like someone taking care of my place , I don't know anyone would be a disaster, it's a huge decision! I think your a very brave person for doing what you have done , I am still on the fence , thank you very much . Mike

Hey @mikej, checking in to see how you are doing. I know it can be difficult keeping positive while being ill and uncertain about one’s future, especially around the holidays.

I’m a very analytical type person and by necessity very independent. I’ve always found it best to keep my options open, learn as much as possible about the paths I can take, weigh the costs and benefits for my wellbeing, plan for effective outcomes, and act.

I took full advantage of my medical providers and their knowledge, along with my own research. I encourage you to do the same and remain hopeful and positive. And, continue to reach out to those of us on Connect who have been where you are.

Athena

Oh bad days and not so bad days , can I ask you a question ? I am sure you have been through it all , was it worth it after everything you have been through ? Maybe I just have a poor attitude but been weighing both sides and having a hard time deciding if I want to fight this ! Thanks so much

Yup. I’m alive! For which I’m extremely grateful. I’m sure most anyone whose had a transplant would say the same thing. It doesn’t mean it’s going to be a walk in the park. I’m not generally the type to give up without a fight, though. And, I feel you’re the same.

My new liver is doing great. And, while I do suffer some side effects from the meds, I’m hopeful these will reduce; for now, they’re manageable. Most of my ongoing health issues are due to my autoimmune diseases. I get to see a rheumatologist and a neuromuscular MD at the hospital where my transplant was done, so hopefully I can have a coordinated treatment plan to better suit my needs.

I’d recommend Mike that you continue to chat with your transplant team. They’ll know if you’re a good candidate. Try to work on a plan for your horse farm while you’re grappling with this, take care of yourself, follow your doctors advice, invest in some good compression socks (they’re very stylish) and some comfortable shoes….about a size larger than your current size. And, breathe 🧘. Don’t worry about post transplant yet, you’ll have plenty of time for that.

Remember, many transplant patients live long reasonably happy and healthy lives. Which definitely beats the alternative! At least on Connect, I’ve found transplant recipients to be good people and very resilient.

Athena

Oh, for got to mention Mike. Check to see if your hospital has a liver disease/transplant support group. Unfortunately mine had stopped meeting due to Covid when I was getting pretty sick. But, they started meeting virtually, so I found it beneficial after an got out of the hospital.