This and That and Talk - My Transplant

@jackiez I now live in Cedar Rapids, IA, but I spent my teen years in the Iowa QC.
Congratulations on your Transplantaversary!!

@bjintn, Hi Betty. I want to welcome you to Connect. I looked at your profile, and I am deeply touched by what you have been going through. I can tell that you are a strong person, and that is going to be your strength.
By way of introduction, I am 2 years older than you. I lived with liver disease for nearly 8 years before I progressed to endstage liver failure and was listed for a liver transplant. I received my transplant in2009. I only had one bout of esophageal varices, and they were oozing rather that bleeding, so I did not require emergency treatment. Mine were banded with an ERCP procedure. It was not something I would like to do again. I hurt, just reading your experience. My doctors were very careful to monitor my blood pressure to give me every bit of help to avoid bleeding again. I also remember being on medication for blood pressure.
Betty, you are NOT imagining feeling miserable. Liver disease and cirrhosis do have awful symptoms, and each of us will experience one, some, or all of those.
Here is some information about Nonalcoholic Fatty Liver Disease from the Mayo Clinic Patient Care and Health information: Diseases and Conditions.
https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/symptoms-causes/

I am quite confused and concerned that your GI is only going to see you annually. Do you have a primary care doctor who is monitoring you?

Ahhhh, yes. Comfort? I’m not sure. But hope? Yes, of course.

At the end stage, I was in ICU, kept alive with only machinery and drugs, bouncing back and forth between too sick to be operated on and 1A, top of the list. Why am I here then? My caregivers, Mayo Clinic, my anonymous donor, stars aligned, blind luck—some combination thereof. I had to have a simultaneous liver and kidney transplant; hepatorenal syndrome had done my kidneys a turn.

What I’m saying is, there’s always hope. My worst day post transplant beats my best day with ESLD. Bleeding varices? Check. Encephalopathy? Check. Blood pressure labile? Check. And the lactulose, my god the lactulose...

So, again, much sympathy. If your hepatologist is planning to see you above ground in a year, that’s good. At age 71, many transplant centers won’t list you, that’s true. But, but—have you discussed the option of a living donor with your hepatologist? That might be a possibility.

There are a lot of variables. And I’m no hepatologist. All I can offer is my experience, strength and hope.

But don’t give in utterly to despair. No. Find a trusted counselor. Talk. Write. Plant a tree. Sign up for joke a day. Join a support group (really). Or start one. I mean a live, in person one. If you’re a spiritual sort, pray or meditate.

Or not. These are just things I tried or heard of.

Hello Rosemary how r u? Guess who has covid? Me!! As of monday.thought it was the flu then went to a medic clinic tested for flu and covid.flu negative covid positive!per doctor atMt.Sinai went to ER at local hospital and had the monoclonal antibodies shot..hopefully this will pass soon..it is a really bad flu symptoms..oh well hope all is well with the group..As Rosanna Rosanna Danna use to say.. it's always something!!!!

Jackie, oh my goodness! That must have been a real shock to the system. I know that you are being so careful. This is the kind of firsthand news that gives me the creep's because of how easily I might be exposed to it. Any way, I am happy to hear that you got the monoclonal antibody shot! Did you just go to the local ER and present test results? Did you need a referral from PCP or your doctor at Mt Sinai?

I called my Dr. At My. Sinai and her advice was to go to ER for the shot. I called first to see if they had it .no prescript needed actually they took my word for it...that was weird..u try to figure it out where did I get it..the food market I wear mask..wash hands as soon as I get in stay
6 ft from people.no one I know has it ..go figure..lv and hugs...

Ugh! I’m so sorry you got the dreaded COVID! You will get through it Jackie. I know what you’re going through is scary…I was so nervous for my new liver! But there were no lasting impacts for me after the monoclonal antibody treatment.

I hope you’ve had the MA treatment by now. You’ll feel worse for a day or two after it, but then you will be dancing and playing with the pup again!

Heal soon and hugs! Athena

Hi Bette...I can relate to your story. I was diagnosed with NASH in 2014. Over the next 4 years had the EGD procedure nearly 25 times because of varices, always banded never bled...yea! In 2016 diagnosed with liver cancer. In 2018 the now 3 tumors were large enough to treat, a transplant was the only option. I was transplanted at Mayo Jacksonville Nov 2019 at 70. Everything has been miraculous throughout this journey, not all enjoyable, but definitely a miracle. I'll be 73 in July and still deal with age related life issues, but my liver is doing great, I'm still with my family and I'm alive! I am eternally grateful to my Mayo family, my own family and my donor family❤ Never give up, its not an easy road but it is worth traveling it. Blessed wishes to you.

Hi hi hi..so happy to hear from you!!! Yes I got the dreaded case everyone wanted to avoid!!! Today feel a little better but not 100%. I spent last two days cleaning house and disenfecting it.sleep at night not so good.on ward march !!!have a good day hope all is well with you...

Great to see your wise comments here, Athena.
We've missed you!