I joined a month or so ago. Got a very nice email from someone who really supports this website pushing me to contribute. Normally don't do this but here goes. I'm 65 and retired. Found out I had kidney disease in 1984. Untreated strep infection (theory then). Got bad quick. Asked family on Christmas day 1986 for a kidney. Started dialysis next day. Bro donated in May 87. Incredible run. Sister in law donated in August of 2007. Still working fine. Both donors still alive. Anyone have incredible ideas on saying thanks to my donors for the 50th time let me know.
I found this website because of my search for others who have been taking the meds long term. Now into my 38th year I'm expectedly struggling. I've slowed down a lot. Sleep either works or not. Skin bad & likely top liquid nitrogen user in US. Added blood thinner in 2021 which pushed me off the deep end. I'm in Minneapolis area with both transplants at University of Minnesota.
Know I sound like I'm complaining, but I truly realize how fortunate I am.
Thank you for this website, Sarah, and you.
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twicerecipient
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I am 24+ years post transplant from a 16 year old deceased donor. I had my transplant at the U of WI in Madison. When I retired we moved to Casper WY to be near our loved Rockies. I am 73 years old and doing well. Yes, I have been a long-time "pill taker." I no longer take Prednisone, but do take Neoral (Cyclosporine) and Myfortic (Mycophenolate) for my immunosuppressants. I started taking a blood thinner in 2022 and also take Fosamax for osteoporosis and of course 2 different high BP meds.
Take care and hope your transplant continues to do well!
Thank you so much for the kind reply. Cyclosporine and prednisone were the drugs of choice in 80's & 90's. Now I'm taking mycophenolate and tacrolimus and 5mg of prednisone (maintenance dose). It's hard to know exactly what the drugs do vs just normal aging. Whatever it is, it's happening much faster.
I took those exact drugs until about 3 months ago. Ten year transplant. The Tac started making me so sick in a year I lost 40 lbs! Got down to 86 lbs!! It took them (Cleveland Clinic) a year to change to cyclosporine & so far things are going good. Shows how everyone is different.
Sorry you are having problems. I do really wonder about the drugs and there effect as we age. I was actually #1 in a study of mycophenolate at the University of Wisconsin. Early on, I had a lot of GI issues with the drugs. Found that if I take name brand Myfortic and Neoral, my GI issues improved a lot. I still take both of those name brand meds. I was able to get off the Prednisone about 10 years ago, as I was developing osteoporosis. My latest creatinine was 0.9 with a eGFR of 90.
I have a lot of problems with sleeping, but I guess that is a common complaint of recipients.
I’m 15 months post transplant this week, February 16th. My kidney continues to work well. I initially took Myfortic and Prograf (tac) as well as prednisone. It took about 6 weeks to move me to maintenance level (5mg) of prednisone which is what I’m still taking today, I no longer take Myfortic. I now just take 3.5mg tac daily and 5mg prednisone.
But it’s been a rocky road. I had dangerously low white blood cell count for 7 months. During that time I began testing positive for CMV. I was CMV- pretransplsnt. My deceased donor organ was CMV+. So I picked CMV up from the donor organ. That placed me at very high risk for CMV and having a difficult time controlling it. I tested positive gif CMV in April 2023. They tried different approaches with medication shifts to pull the CMV down. For months nothing worked. During that time they also started Neupogen injections to increase my WBC count. My body didn’t respond normally to the injections either. Eventually they tried pulling me completely off Myfortic. Much to their surprise the CMV labs began coming back as not detected.
They discovered that I have T-LGL leukemia in late Nov 2023. From what my hematology oncologist tells me, it’s the leukemia that caused the typical treatments for both CMV and extremely low white blood cell count not to work. I’m only beginning to learn about and deal with this type of leukemia. However, pulling me off Myfortic has stabilized my CMV data. My oncologist was definitive when saying that he would have pulled me off Myfortic if I hadn’t already been pulled off it. He also verified that Neupogen doesn’t work effectively with leukemia patients.
Last week my transplant nephrologist cut back on my labs and appointments saying my kidney is stable. I’ll see her again on April 11th. That will be 5 months since my last appointment with her. I will not be surprised if she talks about turning me back over to my regular nephrologist for ongoing care and only attending one appointment a year with the transplant center at the end of my April appointment.
Meanwhile my next appointment with the oncologist is Friday, February 16th. So I’ll celebrate 15 months post transplant as I see him for my third appointment. Of interest, WYOAnne, they treat T-LGL leukemia with:
1. Cyclosporine
2. Prednisone
3. Blood transfusions (for anemia)
These are use for short time periods when T-LGL is actively causing extremely low neutrophil counts and/or high lymphocyte counts with or without severe anemia. Occasionally they use more powerful chemotherapy meds.
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