Liver transplant - Let's support each other

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.

@amykyall, Welcome to Connect. I see that you had your transplant one year after I had mine. I am sad to read about your difficulties with 3 positive covid19 tests. Did you have symptoms? We’re you able to get of the monoclonal antibodies treatments?
Have you asked your transplant doctors about the current bothersome symptoms and if they are due to post covid19? Or if they are caused by anything else?

Welcome @gerryp. I love your mission to give back and help support fellow liver transplant recipients.

@gingercorless, here's more information about the monthly Zoom support group for people at Mayo Florida. The next meeting is tomorrow, May 24 at 11 am ET if you're able to join.
- Liver, Kidney, Pancreas Transplant: Second Chance Support Group, Mayo Florida https://connect.mayoclinic.org/event/liver-kidney-pancreas-transplant-second-chance-support-group-156/

Gerry, your transplant is still rather new (Feb 2022). May I ask what condition led to your needing a new liver? What activity are you most excited about being able to do again?

Welcome @gerryp. I love your mission to give back and help support fellow liver transplant recipients.

@gingercorless, here's more information about the monthly Zoom support group for people at Mayo Florida. The next meeting is tomorrow, May 24 at 11 am ET if you're able to join.
- Liver, Kidney, Pancreas Transplant: Second Chance Support Group, Mayo Florida https://connect.mayoclinic.org/event/liver-kidney-pancreas-transplant-second-chance-support-group-156/

Gerry, your transplant is still rather new (Feb 2022). May I ask what condition led to your needing a new liver? What activity are you most excited about being able to do again?

Hi all, I've tested positive for covid 3 times and it's been 6 months since and I'm still having a lot of issues, health and a little mental? I'm wondering if it's this long haul everyone is talking about and what can I do to get help? I had a liver transplant in 2010, and finally got all 3 covid shots, but have been sick before and through them. I'm having so many weird issues I'm not sure what to do about them. Does anyone else have problems with this?