Liver transplant - Let's support each other

Has anybody ever read the information literature that comes with your medications?
Whenever I get my refills from the Mayo Specialty Pharmacy I get a very detailed information sheet. When I get a medication from my local pharmacy, I usually must ask for the information sheet/Medication Guide..
When I first read the long list of risks and potential side effects for my transplant medications, I was surprised and also worried. So, I began my list of concerns and...my transplant doctor or nurse has always been most helpful. They have explained to me about what this means for me and how they are going to monitor the health of my transplanted organs. And equally important they told me what I need to do help keep my organs healthy.

If you want to read about Sirilimus, Tacrolimus, and other medicatioins, you can find an alphabetical listing of Drugs and Supplements at:
https://www.mayoclinic.org/patient-care-and-health-information
Here are some highlights that I read - The dosing for both of these medicines will be different for every patient. And the risks of taking the medicine must be weighed against the good it will do. This is a decision you and your doctor will make. The medicine usually comes with a Medication Guide and patient directions. Read them carefully and make sure you understand them before taking this medicine. If you have any questions, ask your doctor.

Best answer yet

@gaylea1 I presume you get regular lab work done. If your creatinine (and I think BUN too) is within range then you don't need to worry. Mine was going high so they told me to drink 80 - 100 ounces of water/fluid a day. That didn't do it enough for me so they switched me from tacrolimus (Prograf) to sirolimus (Rapamune).
You still see a hepatologist post-transplant? At my hospital, after transplant you no longer see the hepatologist, just the transplant team. All hospitals seem to have slightly different protocols.
Bottom line -- if they are not concerned then you don't need to be either!
JK

Probably.

Absolutely and ASAP.

@contentandwell ..I have never been advised nor has it ever been mentioned to me that my immunosuppressant ( tacrilomus- prograf ) could cause me kidney problems! Is this something I should be asking about at my next hepatologist meeting?

Thank you. Yes, I was informed by the transplant hepatologist that about 20% of successful liver transplants will need kidney intervention. I take Prograf and have been on 1.5 mg BID for years and has kept my liver stable. Last November I had labs drawn and my Prograf level was elevated. My dose was decreased to 0.5 mg BID. My renal numbers improved. This AM I had labs drawn and my liver enzymes were dramatically elevated. Mayo called and wants a repeat lab tomorrow AM. Maybe an ultrasound or biopsy depending on the results. I am a seasoned RN but this is complex, even for me.
When I had my second liver transplant I was very ill, given about 72 hrs to live. That surgery was complicated due to scar tissue. Prior to them finding a liver my kidneys failed and were considered "injured" which led to the kidney failure. I had intensive hemodialysis which saved me. Yes, the Prograf is nephrotoxic and contributed to the renal failure. It is a real balancing act in managing both organs.
Being a patient has given me a new perspective on being a nurse. I consider that a gift. A few years ago my friend suggested I write a book. I thought about the title Both Sides of the Bedpan. LOL
Thank you for the encouraging words about dialysis. My fear is an overreaction based on what I have seen.

@joanaiken You have surely been through a lot with two liver transplants and now needing a kidney transplant. Did the immunosuppressants cause the need for a kidney transplant? I used to participate in a different liver group and I recall one person saying that their transplant center had told them that eventually they would probably need a kidney transplant due to the immunosuppressants. My transplant center, Mass General in Boston, has been very pro-active. When my creatinine went up they changed my immunosuppressant. They really stay on top of everything and tend to be conservative, which I like.
I know the thought of dialysis is daunting but I have known a number of people who have led very good lives while having dialysis a number of days a week. My niece's husband was on dialysis for about five years. They used to travel within the country and set up dialysis ahead of time at a hospital close to where they would be. He finally got his new kidney last August.
I hope your wait will not be as long as his was.
Best hope is that you do find someone who will be a live donor for you. If that doesn't happen I hope your wait isn't too long for a cadaver kidney.
You are fortunate to have your husband there with you to be your caretaker. I had the same good fortune. Our son and daughter live out of state so they were here only in spirit and for occasional visits.
Being a retired RN does give you a better appreciation for all of this, but also probably makes you more conscious of which nurses are great and which are not so great. When I was in my local hospital a few times pre-transplant for HE episodes, most of the nurses were "not so great". When I was in Mass General every nurse I had was great.
Hugs, JK

@joanaiken
Yes..yes..yes. Advocate for yourself if you are able...if not educate all caregivers....this is hard because some caregivers are better for certain things. Not everyone can comprehend the medical aspects...especially in an emergency.....

When I was diagnosed with liver disease, it was when I vomited frank blood in a large volume in the middle of the night on May16th, 2007. ER then admitted to ICU. Was informed that I had cirrhosis stage 4 and would require a liver transplant. WHAM ! Just like that. The hepatologists said that I was Hep C positive and had mostly acquired it 20-30 years ago and had no symptoms. My MELD score stayed 9-12 for about a year. Was hospitalized several times for bleeding esophageal varices with EGDs performed at regular intervals with some banding. Normal bilirubin is 0.3-1.0. The docs at Mayo said that they had never operated on someone with such a high level. I was placed on the kidney transplant waiting list last September. The nephrologist wanted me to be ready for dialysis just in case. I had an AV fistula created which quickly collapsed and failed. Next step would be a graft if needed. I am surprised that the only few people that have stepped up to the plate to be a living donor have medical issues that would disqualify them. Except for my husband, but that would run into caregiver issues post op. I admit that it has been frustrating, as you have to be more sick before you can feel better. That is where I am now. Support is so invaluable right now. I am now a medically retired RN who worked with renal patients for 4 years. The thought of dialysis scares me and I am terrified that I will need it...…. One thing that I have learned on this journey is that you need to advocate for yourself with the medical team.