Liver transplant - Let's support each other

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….

@gerryp, Hi and Welcome to Connect. I had never heard of SSC before. I did hear of PSC because that is why I was sent/flown to the Mayo in Rochester (the top specialist in PSC). Like you I had my transplant at age 60! Last week I had a very successful check-up for my 13 th year anniversary of my liver and kidney transplant. I have the lucky fortune of seeing both departments! I really can't say who was more thrilled at my good report - me or the transplant doctors! Those folks are amazing.

Congratulations on your recent transplant!
I joined Connect because I also wanted to give back and to meet others with liver transplants. Now I have met people from all over the world here on Connect with so many beautiful stories. I count you as one of them. Gerry, You are most welcome to use this Mayo Clinic Connect Patient Transplant Discussion Group to reach out and support others! I encourage you to share and use your experience to support others in any of the discussions anytime!

Here are a couple of my favorite discussions to get started:
-Everyone has a transplant story to tell
Organ Donation and Transplant: What is Your story?
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/
-Everyone is invited to share hope in a photo or memory._
Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
Gerry, Will you have a 4 month checkup?

Thank you Colleen. I was diagnosed with Secondary Sclerosing Cholangytis (SSC) in March 2020 at age 60. This was caused by septic shock, the result of a completely blocked gallbladder. I had, liver, kidney and pancreas failure within a matter of hours.
They told my wife I would most likely not survive. It happened so suddenly and without warning. Like a time bomb. Prior to the gallbladder attack, I had been perfectly healthy.
Well - the first miracle was I did survive! But the septic shock resulted in loss of blood flow and oxygen to my liver, and caused scarring of the biliary ducts within the liver.
The liver is the only organ that can regenerate - but as I learned, the biliary ducts cannot regenerate. So my sclerosing cholangytis was the result of the organ failure.
Unlike PSC, SSC is not an auto-immune disorder.
It’s very rare, as most people don’t survive. In fact MGH only sees this diagnosis very rarely, and several of the doctors at Mayo had never seen my diagnosis. The second miracle was I received my transplant last February. I had probably 5-6 dry runs between MGH & Mayo before receiving the perfect organ.
The dry runs are very difficult emotionally. Thank goodness I had a very supportive caregiver, family and friends who helped me maintain my sanity.
But that is now all history as I feel wonderful - finally!

I am just so thankful to have my health back. I had several complications post transplant, but the excellent doctors at Mayo are on top of it. I am so thankful and hopeful that I can return to a mostly normal life in a few more months.

So - Ginger - hang in there, keep a hopeful attitude, join the support group and you will find many people who have been down this road and can help you and your husband maintain his health and attitude while you wait for the perfect donor.
Gerry

@gingercorless, Oh My Goodness...I've been there...jaundice, varices, fatigue...Believe me when I say that it will get better when he gets his liver transplant. In the meantime the wait can be miserable and seemingly endless. For my husband, it was as awful as it was for me and I am certain that is how it is for you. We were married for 34 years when I received my own simultaneous liver and kidney transplant.
Ginger, How many years have you and your husband been together? Are you thinking of anything that you and he will do after he is recovered?

Hi Ginger & welcome to Mayo Jacksonville. Your husband could not be at a better hospital. I am brand new to this group. I received my liver transplant on 2/28/22 - so just about 3 months ago. Absolutely amazing! I haven’t felt this good in over 2 years. My natural meld was a 19, but I was eligible for 10 Exception points given the rarity of my condition, and was able to increase my meld up to 25 (2 points below the average Mayo transplant score).
I was listed for 1 year at Mass General before being advised to come to Mayo. I had a few dry runs at MGH before they recommended I come to Jacksonville. I waited 7 months here, and had several dry runs before my final miracle arrived. I am forever grateful to my donor’s family.

Mayo has a weekly support group that used to meet in person, but because of Covid is now done on Zoom.
I found this group to be immensely helpful & supportive as I waited for transplant. The group consists of both pre & post liver transplant patients. I have made some incredible friends thru this, and several have acted as my mentors helping me with both the emotional & physical aspects of liver transplants.
I recommend you reach out to Mike Womack at Mayo and he can provide you with the Zoom link and details on the group. Mike is the social worker who moderates this group. We meet on Tuesdays at 11am for 1 hr. I know it helped me immensely as I waited for transplant.

I now live locally here in Jacksonville. My wife and I liked it so much we re-located here. I would be happy to meet or speak with you and your husband if that would be helpful.
Like Brian - I want to give back to help others navigate this process.
GerryP

He is feeling pretty well. His varices are causing issues. He has to have more banding done. His energy level is dropping and he shows some jaundice.

Thank you for your words of encouragement.
Ginger

We were placed on inactive list for 10 days. We will be reactivated on May 31st. Since he has no symptoms they will not require a Covid test. Yes it is disheartening but we think we will get a call again in June.