Liver transplant - Let's support each other

It is a rainy afternoon here in Kentucky. I'm following my own suggestion by pulling up a comfy chair, and sharing what is going on with me.

My transplant surgery was 12 years ago, and I am looking forward to beginning year #13 later in April. I wonder, sometimes, if others get as excited as I do about adding post transplant years? Now birthdays are a bit different - I don't like mentioning those unless I have to!

In a few months, I am scheduled for my annual evaluation and looking forward to the drive that my and my husband will split into 2 days. We take turns driving. It is a 1600 mile round trip for us, and we have the route memorized. It will be our first road trip since my evaluation at Mayo Rochester in June last year.
We are looking toward the future and hoping to be able to take our National Park trip that we had to cancel this past September. (Olympic NP and Mt Rainier NP). I know that since we both have not going to the gym, and have been sidetracked from our daily walks, that I have a lot of catching-up to do, if I want to do any serious hiking.

Does anyone, who transplanted at Mayo Rochester, know if Mayo still gives transplant recipients the dark green Mayo satchel? They were both handy, and a great way to spot other transplant recipients!

@rosemarya Wow, 12 years is a huge milestone for you! Congratulations. I sure hope you're able to get out more soon enough and ramp up those muscles for your road trip to the northwest! Gorgeous area out there!

You have quite a trek to get to Rochester and I know it can be little daunting with all the Covid necessities. But we've been finding on our trips, we just do what we've gotten used to with masks, hand sanitizers and being super cautious at rest stops or gas stations. We pack our own food in coolers or hit a drive through if necessary.

Do you spend a night in a hotel on the way? Hotels, at least those we've used, have all been extremely judicious with following protocols for Covid. Of course I still take a package of wipes to do all the doorknobs, light switches, remotes, horizontal surfaces, etc.. Years ago my husband used to tease me about that! Now he is the first to ask if I've packed the wipes! LOL My OCD pays off! For 20+ years in the dental clinic where I worked, I was the infection control coordinator. Attended way too many videos and 'germ' conferences to take hotel housekeeping at face value. eeeeew!

Yes, Mayo Rochester still gives the dark green Mayo backpack. Is that what you mean? It is handy!

Last fall it came to light my son had ruined his liver with alcohol. Through the holiday season his life expectancy was in months, at most. It would help to know more about the tradeoffs (full transplant versus living donor). Gratefully, his condition has improved and his doctors are talking about continued parcentesis versus diuretics, or TIPS. Some way of talking about it would be very helpful. Thank you.

@mditri, Welcome to Mayo Clinic Connect. I am a liver and kidney recipient and I am a mother. I am especially happy to meet you here in this discussion with other liver transplant patients.

It sounds like your son had a very close call a few months ago. I commend him for his efforts that have caused a reversal in his liver condition.

Here is information about liver disease to get you started to talking.
https://www.mayoclinic.org/diseases-conditions/liver-problems/symptoms-causes/syc-20374502
Has the doctor discussed a potential liver transplant with him, yet?

Thank you Rosemary, this link looks very helpful. I will study it. Yes there was a little talk about transplants--but it sounded like nothing serious until he could not drink for 6 months, which he did. Now, they are saying his health is good enough that he isn't eligible (which can't be anything but good). The doctors just recommended TIPS, his weight loss has been profound and they perform paracentesis about every two weeks. My hope was that they would want to wait another 6 months or so. He is in for paracentesis and blood work now. I'm sure you know what an emotional rollercoaster this can be. Thank you again, we sure appreciate your help. Mike.

Mike, I I have to say it again - I am thrilled that he has made such a successful turnaround in his liver condition! The liver is an amazing organ.

I had a transplant in 2009 when I was 60. And I was told early on that every patient can experience different symptoms, even if they have the same liver disease.
My disease was a progressive disease without a cure.
Having a paracentesis every 2 weeks, sounds like a good plan because as the fluid builds up, it gets extremely uncomfortable. If there is a good side, its not painful, just boring.

This is the Mayo Connect Transplant Blog where staff posts regularly.
https://connect.mayoclinic.org/blog/transplant/
Here are some articles I selected for you
https://www.mayoclinic.org/tests-procedures/liver-transplant/about/pac-20384842
https://www.mayoclinic.org/diseases-conditions/alcoholic-hepatitis/symptoms-causes/syc-20351388
Mike,
Yes, it is an emotional rollercoaster. It can also get to be a lonely journey. We are here anytime.
Do you have to travel far for treatment?

Thank you for the articles. I will read them--but it is very hard and discouraging.

He is in Seattle Washington and we are in Dalton Georgia (just south of Chattanooga), so he has had to go through it alone. With covid (and his condition) we couldn't go out there. It has been very stressful. He just texted me. He didn't give me his weight, but they took 8.5 liters (over 14 days). (I'm into measurements). That is 0.61 liters/day--down from 0.83. My guess is his weight will be down again ~137#s and he is a tall man. He just moved and can't find his scale. We (my wife Suzanne and I) are vaccinated and he got his first shot Monday. At least one of us should be able to get out there soon. Have a nice evening, Mike.

There is such a thing as too much information. And I think I sent you too much. Put the articles away until - or - if - they are ever needed.

It sounds like your son is on the right path. I was diagnosed in the summer of 2019 with an autoimmune disease which caused stage 3 liver cirrhosis. I developed varices and had several upper GI bleeds due to bursting varices, and had the TIPS procedure. If your son’s doctors suspect he may be in danger from varices, getting the TIPS will be beneficial. It’s a noninvasive surgery. Please keep encouraging your son to stay away from alcohol, eat well (lots of protein, fruit, veggies), and exercise (walking is great). The healthier he is, the better chance he has for forestalling the need for a transplant and doing well if he does need one. I agree with Rosemary that the liver can be amazingly resilient. While my disease is also incurable, I did reasonably well for nearly a year and received a liver transplant in August. Please let us know of your son’s progress.

Anybody here waiting for, or already been transplanted for HCC? Just curious what were, or if you had any symptoms pre TX?