Liver transplant - Let's support each other

@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?

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@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

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@rrichardparker, I want to re-welcome you to Connect. It has been a while since I have seen you in the transplant group. I am also a transplant recipient. I joined Mayo Connect because I wanted to meet and to learn from other transplant patients. I learned that as a recipient, I can share my own experiences to help others along their own journey. I have a feeling that you have learned a lot from your transplant, as well as how to manage your self care for 6 post transplant years.

Are you interested in supporting others who are like yourself?
I invite you to look thru the transplant discussions that are happening because there have been a lot of new members and conversations. You are always welcome to join in anywhere, with your own comments, questions, and helpful suggestions.
How can I help you get started?

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It’s always helpful to hear how others are managing or managed your journey through transplant. I am currently listed for liver/kidney transplant. So far I have had four false alarms. I find that after each one- it’s such a let down. I have had all the prep for transplant down to the shower and IV. Although I am very happy for the potential opportunity, each time... the waiting is hard.

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@birdienanie I also went through the whole prep...ready to be transplanted but it fell through. The excitement and the let down were a set back emotionally but when my call finally came I was fully prepared. Hang in there it may come totally out of the blue. I was all ready for a late night or early morning call but it ended up being a 12 noon call and I was elated..

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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.

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@contentandwell. The (liver) transplant team is made up of a group of hepatologists at University Hospital. I do have labs done every month still. They are keeping a close eye on me. I normally drink at least 64 oz water daily. I do have some symptoms, loss of appetite, restless nights and some diziness.

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@rosemary Good link. My transplant does keep a careful watch on everything that involves my transplant. They leave other issues to my PCP, I think that is unlike Mayo.
On my lab work last week my sirolimus was a bit higher than it had been and they called me about it. They are leaving me as is for now but want me to get tested again sooner than usual so if it is higher they can decrease my medication. They want it at the lowest dose that will protect my liver but at the same time not leave me too unprotected to germs and infections.
Unfortunately, my blood counts cause me to have to continue prednisone. 😥
JK

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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.

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