Liver transplant - Let's support each other

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.

@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?

Absolutely and ASAP.

Probably.

@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

Best answer yet

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.

Excellent response.

@joanaiken, Every year for my annual eval, I undergo a series of tests that monitor the function of my liver and my kidney - as would be expected. The minimum amount of tests includes these basic ones: blood tests, urine samples, a renal function test, ECG, X-rays, abdominal ultrasound, and on protocol years (1,2,3,5,10) a biopsy of my transplanted kidney. I had always thought that the renal function test was because I have a kidney transplant, however, I have met several other transplant folks in that waiting room, and I think the nurse told me that all transplant patients have the kidney function test.
Since you have a liver transplant, do you mind if I ask you, Have you had the renal function tests? (involves passing and measurement of urine quantity, blood draw, dye injection) If so, did the results show evidence of your advancing kidney failure?

Yep. I have had annual evaluations for 10 years. The last few have not included biopsy unless indicated. Funny you should mention biopsy. I have one with ultrasound scheduled, along with repeat labs on Monday morning. Had 2 sets of labs drawn this week that showed a dramatic increase in the liver enzymes. I am a nervous wreck today. I think this is due to a Prograf dose decrease about 3 months ago . The dose was bumped up starting this PM. It has been quite the journey in managing both the kidney and liver. Thanks for hearing me out.