Liver transplant side affects in young adults

Good Morning, @yiyii9191, and Welcome to Connect. I am a transplant recipient, but received my liver and kidney as an adult. I am very much concerned as I read about your 4 years of confusion serious health concerns since your transplant at age of 17.
You are correct that cataracts and diabetes can result after a liver transplant due to medications and any preexisting medical conditions. That is why the medications are closely monitored, immediately and over time by our doctors with routine blood labs. Has your transplant team been keeping a close check on your medications with frequent labs? Have you able to have the lab tests performed? Do you know if there is a pre-existing health condition that is involved?

I really understand how you must feel with your eyes showing jaundice. Jaundice, or yellowing of the eyes might be a sign of infection or bile duct complications. And I sense your confusion about your doctors being confused! Your immunosuppression meds should not be causing yellowing eyes.

Are you under the care of a liver transplant specialist? Or if not, are you located where you have access to one?

Hi!

Yes, I have a specialist I see. And I get bloodwork frequently. I’ve had acute liver failure ten times or more over these four years. I turn 22 this year actually 🙂 . And monthly hepatology visits. They’ve said themselves that there’s not much they can do about what I’ve been going through over the years. And that I’m a “rare” case. It’s been a nightmare honestly.. but I hope there’s sunshine after the rain. I’ve withdrew from school four times because I’ve never been well enough, and I’m mostly always sick. My levels are always elevated.. which is now normal because I’ve received all of the steroids through the IV that I could get.. so the hospital says. So, I’m kinda scared sometimes.. but.. that’s okay. I didn’t have health conditions prior besides chronic migraines and stomach aches. Thank you for your comment. And thank you for sharing that you’ve also received it as an adult. I got mine a week after I turned 18!

Where are you? Are you near a major university teachng hospital with a Liver Transplant Center?
I was sent to Mayo by my local transplant team because of my 'rare' liver disease Primary Sclerosing Cholangitis (PSC) that was researched at Mayo. My local doctors took care of all the arrangements to get an appointment for me. I am aware that with PSC, my disease could return amd infect my transplanted liver. I wonder if something like this is happening to you that your doctors are not familiar with.
I definitely encourage you to get a second opinion about this 'rare' condition so that it can be diagnosed and that a treatment/management hopefully will be administered. Your doctor should be able to help you to get the medical records together and make a referral. You might even qualify for a research study. Does that sound like something you would consider? Do you have contact with your transplant caregiver or a parent who can help you with this?

If you are interested in contacting Mayo Clinic, Here is information to the Liver transplant Department and Contact information:
https://www.mayoclinic.org/departments-centers/liver-transplant/home

Please let me know if this is something that you want to pursue. Please keep me up-to-date on your health.

Hi,

I don’t think I have a Mayo Clinic near me. I’m in Chicago Illinois. It’s great your doctors made the arrangements for you! And :/ , that’s very true + I always wanted a second opinion. Okay, and that is something I’ve considered. I’ve done a research study before, but it wasn’t transparent related. I think I do have someone to help me find these things. Okay, I will.

Thank you!

You are 5 hours yo Rochester mn mayo. Top hospital for liver Transplantation. Many hotels with discount rooms for mayo and shuttles. They work as wide team of departments from hematology, endonocrology, pharmacy, hematology, radiology etc. 20 years in Transplantation. It it one of the founding transplant hospitals. You are not far if you can reach out to them for 2nd opinion. Best to you. Keep hopefully and moving forward.

Thank you!

I go to Mayo and I am 3 hours southeast of you. They are worth the second opinion if you have someone who can help with transportation. May I ask if you are with University of Chicago or Northwestern?

Oh 3 hours.. no I’m not with either of those. I go to rush hepatology. Are you also talking about the Minnesota Mayo Clinic? I would try it though..

Yes, Im talking Mayo Rochester. As someone said, you would be about 5 hrs drive time depending on your specific location. Lots of resources and discount on many hotels. Insurance usually allows a second opinion. Mayo is the number one hospital worldwide. It would be worth the second opinion if you can do it. Good luck!

Yes. I am between you and rochester. Wonderful facility with specialists from every department working as team. Social workers to help a nurse facilitators assigned specifically to you. If you can please reach out. They also have live zoom each tues if you become patient for pre and post transplant patients. Lots of people on there to support peop through the many ups and downs of the journey. Bless you