Liver transplant - Let's support each other

@vera77, I had my simultaneous liver and kidney transplant at Mayo Rochester MN in 2009. My home is 800 miles away. We stayed at the Gift of Life transplant House during my time there. Due to my condition we arrived in late February. My transplant was on April 22, and I spent 7 days in the hospital. At discharge, I went back to the Gift of life House and had frequent labs, and tests as outpatient. I returned home in mid May to continue my recovery and healing.

After transplant there are regularly scheduled labs that begin weekly, and gradually are spaced farther apart. Labs are drawn locally and results sent to Mayo. I returned to Mayo after 4 months, and again 1 year after my transplant. I was given the option of being transferred to my local transplant center for monitoring, but chose to continue with Mayo and I return annually.
My Primary Care Doctor takes care of me locally, and he is willing to follow Mayo's follow-up plan for me. I've only had one emergency hospitalization here, and the hospital and doctors were in contact with the transplant doctors at Mayo during my stay.

Vera, this is just a snapshot from my perspective. I hope that you will look at the links that Colleen has sent to you. I also want to let you know that Mayo does have an International Department.

Here is the link to the Liver Transplant Department and Contact Information
- Liver Transplant Program / Contact
https://www.mayoclinic.org/departments-centers/liver-transplant/home/orc-20211818

@janni1, I can't even imagine how you must have felt when you found out that you kidneys did not recover after your liver transplant as hoped. My kidneys did not respond to dialysis prior to transplant, so I had both organs at the same time. Are you currently on dialysis? or will you need dialysis? How does the listing/wait work, since you already have a transplanted liver?
Are you currently on the active kidney transplant list?

What questions do you have as you prepare?

My kidneys failed after liver transplant for PBC, I ended up with cirrhosis of the liver.
Thought my kidneys may pick up but they haven't so now I am waiting for a kidney transplant.

I coloured my hair before and after transplant..(now 20months post transplant) and never had any issues. Make sure she has a patch test before leaping in to the full monty though. X

Hi @vera77, you are asking very good questions that will need careful consideration for doing a transplant in US when you live elsewhere. There is a period of time directly after transplant that you as the caregiver and your husband would need a short-term stay near the clinic where you get the transplant as well as regular follow up appointments.

Mayo Clinic staff have written these blogs that outline a bit more detail about liver transplant at Mayo.

- Liver Transplant at Mayo Clinic https://connect.mayoclinic.org/blog/transplant/newsfeed-post/liver-transplant-at-mayo-clinic/
- What to Expect: Post Transplant Care https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-annual-post-transplant-follow-up/
- What to Expect as a Transplant Caregiver https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/

@rosemarya @jerrydrennan @amyintucson @arqui02000 @2ndlvrxplantmom @karen51 @parrot53 @eparker6 and many others can share their first-hand experiences with post liver transplant care and short-term stays.

Are you thinking of applying to Mayo Clinic for transplant?

@randallscott1 - Welcome to Mayo Connect!
I am excited to meet another person with a liver transplant. I actually have 2 organs, liver and kidney, and I received my transplant at Mayo Rochester in 2009 . I live in Kentucky and I had PSC (Primary Sclerosing Cholangitis) that caused my liver and kidneys to fail.

Randall, what about you? When? Where? What would you like to share or ask about your transplant?

Liver transplant patient

May I ask if you drink tea? If so, what kind? They said only black tea and that is all I'm allowed to take. The one tea I dislike. Something about messing with my anti rejection meds.

Since you mentioned that your doctor said ' "no tea", I am assuming that your transplant team knows of your cold. Is that correct? If they don't, then let them know. There are a lot of ugly viruses and bugs circulating at this time of the year. He/she might want you to get tested for flu, covid, or any number of tings that can affect a newly transplanted individual.
Not to frighten you, but sometimes a cold is not just a cold. I have made many middle of the night visits to the ER with high temperatures or other symptoms. Some were infections that needed treatment, and others were nothing. If in doubt, get it checked, even if it is middle of the night. 🤍

Hi, @nrbecerril. I am sorry that you have caught a cold and hope that you are not feeling too miserable. I don't think that this is a 1st post-transplant event that you were looking forward too.
My first Tip is to tell you to stay hydrated and maintain your medication schedule. Another thing is to keep check of your temperature, and if it goes above 101 F (38.3 C) or if you have a lower fever that lasts for more than 2 days, you should call your transplant coordinator.
I don't know why your doctor said "No tea" , unless you are drinking an herbal of unusual blend. I have not heard this before. Maybe someone else has an idea and will share it here.
As a transplant recipient, you will be able to take certain over-the-counter medications for discomforts of a cold. You might have received a list from your team. My word of advice is to check with your transplant team before you take anything because they will know what could react with your transplant medications. Sometimes a pharmacist or even a PCP , ER and hospital personnel don't know the complexities related to a transplant.

So my advice is to stay hydrated, take your transplant meds, get rest, and if any questions that concern you - call your transplant team. When you are newly transplanted like you are, please do not hesitate to consult your team.
And one more thing from my experience - I discovered that since my transplant, it takes me longer to get over a cold than it did before my transplant.

I hope you feel better soon!