Side effects of kidney transplant meds

@hardaway3, I would like to take this opportunity to (re)welcome you to Connect. I do not believe that I have met you before, and I want you to know that I am especially delighted to welcome you, a fellow transplant recipient! I do not have any experience with the drug, Zofran, that you are taking. And I am so sorry to hear that you are experiencing this problem getting your refill from your local nephrologist.
It has been my experience as an 8 yr liver/kidney recipient, that my local docs are extremely cautious to about anything related to my organ transplant or my immunosuppressant medications. And the common reply I get is, "You will have to talk to them (Mayo) about that". And although it can get frustrating sometime, I really value my PCP's concern for me and my transplant. With that in mind, could your nephrologist be being extra cautious? Have you invited him to contact your Mayo transplant coordinator about this? Or have you made a request to your coordinator for the refill? That is what I would do.
Rosemary

@hardaway3, I just had a thought. How long has it been since you had an appointment with your kidney team at Mayo? I am on a yearly schedule, with routine scheduled labs. Are you keeping up with your routine follow-ups? You should be able to get a prescription filled for 12 months when you have your annual check-up.
Rosemary

@rosemarya, Thanks for your response. It is a good idea to contact my Mayo transplant coordinator for my refill on the Zofran or any other prescriptions when I get a push back from my local Nephrologist. I have my 2 year follow-up in August with Mayo. I didn't contact Mayo because I was told by Mayo doctors that I was released to my local Nephrologist who would take care of my prescriptions. I'm just a little disappointed. When I had my first kidney transplant at Chapel Hill Hospital in North Carolina, my nephrology team took care of everything, any prescriptions I needed, I got from my nephrology team. They took great care of me. They were very confident and very skilled in their craft and understood that taking care of the entire body (within reason) was directly related to keeping the kidney functioning. When I was depressed, they prescribed an anti depression medicine for 6 months, they didn't say go see a therapist. When I had the flu or was sick they would prescribe medication or put me in the hospital, they didn't say go see a PCP. My kidney transplant lasted 15 years and didn't fail until after I moved away. I'm sorry I have that comparison to think about, Chapel Hill nephrology team set the bar high. On the bright side, I must say that Mayo have the very best physicians and I'm grateful to be under their superb care.

@hardaway3, It does get confusing, doesn't it. And it sounds like you are caught up in the middle of things that is even worse when you are not feeling well and need relief. I firmly believe in going to the primary source, which is Mayo transplant in my situation. Did you have anything to let the nephrologist know that you are released to his care? Is it possible that he overlooked it? My PCP, who is basically the only one I see regularly, tends to file my 'huge' report from Mayo. It is me who takes the responsibility to remind him, when needed. Perhaps this is because I was out of his care by GI, local transplant clinic, then Mayo transplant - He is still a great doc. And I already dread when he decides to retire!
Let me know how this works out for you. I want you to know that you are one of my heroes! 15 years with your kidney 🙂 Do you mind if I ask what caused it to fail? I hope that you continue to do well.
I invite you to look at some of the Transplant discussions. I believe that with your experience, that you more that qualified to join in.
Would love to hear more from you.
Rosemary

@hardaway3, Did you get your medications worked out? How are you feeling, now?
Rosemary

Thanks for your support Rosemary, I do have an office appointment with my Nephrologist at the end of the month. We'll be discussing my current medications at that time. I feel confident that things will go well. Hope all is well with you. Stay strong & healthy.
Darlene

I have 2 teams; one is the transplant team at Mayo and the other is the "home team." I see the nephrologist every 3 months locally, the local GI every year or so, and my PCP. I have prescriptions from both teams. All my local docs have been really good about checking new things or meds out with Mayo since the beginning. They all exchange medical records about me.

I hope your problems are resolved soon. I had some of those symptoms of nausea and diarrhea in the beginning but they settled down after a month or two. I remember taking the immunosuppressive drugs and then throwing them right back up even while I was in the ICU. This continued for a short while after coming back home.

There are so many struggles to face and meet each day on the way to recovery.

I agree with Rosemary that you should talk to both "teams" and get them on the same page as far as your meds are concerned.

Wishing you all the best,
CK

@chattykathy, @hardaway3
Darlene, This sounds like a hopeful plan. Sometimes things just take a bit of time to get coordinated. I hope it goes well for you.
Ck, Thank you for your input. You advice is right on target. I appreciate your nephrologist input.

I do not have a local nephrologist because my kidney failure was acute due to my end stage liver failure. My local gastroenterologist (GI), however, has been in my life for a long time treating my liver disease. His practice is closing next month. With no one to replace him, there is no GI on staff at my local hospital. I am quite concerned in case something ever happens. He is going to meet with me and discuss a plan in a couple weeks. We do have several nephrologists, though.

Hugs and health to you,
Rosemary

When I fell out of trust with my first nephrologist, I asked around about one. I stated earlier that my brother was on dialysis in town where we both lived. I was seeing his nephrologist at first but, after my brother died, I became more sick and asked a lot more questions. I found a GI doctor first since I just learned about the liver disease then. When I saw the GI, he recommended a nephrologist for me. I actually wrote a letter of introduction to him and asked him if he would accept me as a patient. I was very fortunate to have found these two specialists. They are about 45 miles from where I live. The nephrologist travels to a branch office nearby and I see him there. They have been such a blessing in my life and continue to keep me well. They actually visit Mayo-Florida occasionally to learn about new advances in healthcare. We all have to be very proactive in our journey to good health.
Good luck and I hope you will be able to find a really good specialist to help with your aftercare.

God bless, CK.

My diagnosis for liver was NASH, but there was never a real diagnosis for the kidney disease. My Mayo nephrologist thought that since I was blind that the 3 diseases were related to Alstrom disease. I wanted genetic testing to discover if I had Alstroms, but Mayo did not perform that type of testing then.

I do not think there was a clear diagnosis for my brother's kidney disease either. He died after 12 years of dialysis and no liver disease was discovered. None of my other siblings (2 sisters, one oldest, one youngest) do not have any symptoms of kidney or liver disease.
Do any of you have siblings that are also struggling with the same type disease?
CK.