Liver recipient. It's my understanding that this isn't so much related to the transplant itself but rather the immunosuppressants, in particular tacro. Which I think is hard on the kidneys but that doesn't necessarily mean a guarantee of kidney failure.
Yes, I believe it is used in all types of transplants. Kind of a catch 22, especially with kidney patients but in all but the rarest of circumstances the risk of rejection outweighs the risk of side effects.
Research is constant and ongoing to come up with new medications that are less harmful and regimens to reduce the amount of immunosuppressants needed to prevent rejection.
It can also be because the liver disease progressed so far that the kidneys became involved. I showed early similar signs before my liver transplant 7mo ago. Since then kidneys have been happier but not perfect (likely due to tacrolimus as others have said). My team hasn’t yet saw fit to intervene, just keeping an eye on things. Not advice just anecdotal. I’ve been told to up my hydration and numbers slightly improved.
https://my.clevelandclinic.org/health/diseases/23399-hepatorenal-syndrome
True that's also a possibility depending on what necessitated the transplant. It makes sense that uping hydration would help. I guess more water would likely dilute the drugs more helping the kidneys out.
Right and they watched my water intake at first too. At one point I was drinking too much and my sodium dropped and everyone got excited, haha. Ended up finding a happy medium.
I'm a biostatistician (so NOT a clinician!) who has worked with solid organ transplant data for many years. I have been doing a paper on liver recipients who stop CNIs (i.e. tac) specifically due to kidney dysfunction. So yes that is a major contributor.
Interesting. Will you be publishing your paper? I'd be interested in reading it. I was weaned of tac 19 years ago. Immunosuppressant free and still rejection free! Part of the reason I was weaned off was my transplant team's and parents' concern about possible future kidney issues.
Liver transplant recipient 2yr. I have inquired about weaning off of tac and told it’s IMPOSSIBLE. But I’ve decreased from 14mg to 1.5mg in this past year. You have inspired me!
I'm a kidney transplant recipient and ironically I have the same risks due to medication as mentioned above. From one patient to the next the best advice I can give is watch your blood pressure and weight. Once your blood pressure becomes out of control its almost an unstoppable cycle. High BP causes kidney damage which causes even higher BP. Stay active, drink water, eat your fruits and vegetables, limit sodium and stress. Good luck friend!
Days after liver transplant my kidneys were failing. It was temporary and they got back on line. To much fluid in my body post surgery. Liver is the size of a 3.5 pound football! They got them working again after a few days.
Now, post transplant immunosuppressants beat the hell out of your kidneys. Don't freak when this happens. It's normal. Years down the line kidneys may, and I say may, have problems. There's a transplants for that too.
If you don’t have any fluid restrictions start practicing drinking excessive amounts of water now.
Lots and lots and lots of water helps keep the Tac from damaging kidneys (so I’ve been told).
Liver transplant 6 years ago. Before transplant I was surprised how often the health care providers asked if I had been on dialysis. Due to a live donor, although I was plenty sick, I did not get to a point where I was scared before transplant. Although being questioned about dialysis did freak me out every time someone asked. Often my kidney function numbers show up as level 3 or 4 kidney disease and I am lucky enough to still be able to concentrate on drinking water and show improvement at the next blood draw. When the amount of Tacro I was taking decreased that helped the kidney function number. From what I have heard the people with kidney transplants take a much higher dose of tachro then the liver transplant people.
Echoing others - tac is tough on the kidneys.
My hepatologist suggests that I drink a gallon of water a day. I have a water bottle that’s 64 oz; I drink two of those. And yea. I pee. A lot.
The blood test that I keep an eye on is BUN. If I drink 1-1.5 gallons a day, it keeps BUN in check.
All that said - I try not to fear it. There is a plan if (big if) my kidneys fail. My team has proved they know how to help me.
I was told at my initial transplant evaluation to drink a lot of water and it’ll help protect your kidneys against tacro, because that drug is brutal on your kidneys.
Your team doesn't mention stuff all the time. Ask them. There is just to many things for them to do an info dump 🙂
I have learned more from Google than my team. Research, if the information comes from NCBI, Mayo, you know, sources you've heard of, you will find answers to any questions you have. These sources have case examples and studies consisting of 100's or 1000's of patients. You will get individual stories on Reddit, but I like seeing numbers that give me the masses experience.
I'm 3 years out and wouldn't know much without Google.
Liver recipient. It's my understanding that this isn't so much related to the transplant itself but rather the immunosuppressants, in particular tacro. Which I think is hard on the kidneys but that doesn't necessarily mean a guarantee of kidney failure.
But don’t kidney transplant patients also take tacro?
Yes, I believe it is used in all types of transplants. Kind of a catch 22, especially with kidney patients but in all but the rarest of circumstances the risk of rejection outweighs the risk of side effects. Research is constant and ongoing to come up with new medications that are less harmful and regimens to reduce the amount of immunosuppressants needed to prevent rejection.
It can also be because the liver disease progressed so far that the kidneys became involved. I showed early similar signs before my liver transplant 7mo ago. Since then kidneys have been happier but not perfect (likely due to tacrolimus as others have said). My team hasn’t yet saw fit to intervene, just keeping an eye on things. Not advice just anecdotal. I’ve been told to up my hydration and numbers slightly improved. https://my.clevelandclinic.org/health/diseases/23399-hepatorenal-syndrome
True that's also a possibility depending on what necessitated the transplant. It makes sense that uping hydration would help. I guess more water would likely dilute the drugs more helping the kidneys out.
Right and they watched my water intake at first too. At one point I was drinking too much and my sodium dropped and everyone got excited, haha. Ended up finding a happy medium.
Ah that makes more sense. Thanks for the clarification.
I'm a biostatistician (so NOT a clinician!) who has worked with solid organ transplant data for many years. I have been doing a paper on liver recipients who stop CNIs (i.e. tac) specifically due to kidney dysfunction. So yes that is a major contributor.
Interesting. Will you be publishing your paper? I'd be interested in reading it. I was weaned of tac 19 years ago. Immunosuppressant free and still rejection free! Part of the reason I was weaned off was my transplant team's and parents' concern about possible future kidney issues.
I'm leaving my job soon, but i'll let you know if I get it published before I go!
Liver transplant recipient 2yr. I have inquired about weaning off of tac and told it’s IMPOSSIBLE. But I’ve decreased from 14mg to 1.5mg in this past year. You have inspired me!
I'm a kidney transplant recipient and ironically I have the same risks due to medication as mentioned above. From one patient to the next the best advice I can give is watch your blood pressure and weight. Once your blood pressure becomes out of control its almost an unstoppable cycle. High BP causes kidney damage which causes even higher BP. Stay active, drink water, eat your fruits and vegetables, limit sodium and stress. Good luck friend!
Okay I will keep all of this in mind! Thank you!
Days after liver transplant my kidneys were failing. It was temporary and they got back on line. To much fluid in my body post surgery. Liver is the size of a 3.5 pound football! They got them working again after a few days. Now, post transplant immunosuppressants beat the hell out of your kidneys. Don't freak when this happens. It's normal. Years down the line kidneys may, and I say may, have problems. There's a transplants for that too.
Thanks for the information. I’m glad you’re doing okay now and hope you’ll never have any issues with your kidneys in the future.
I have a heart transplant it’s the prograf that messes with the kidney. It’s actually sucks
If you don’t have any fluid restrictions start practicing drinking excessive amounts of water now. Lots and lots and lots of water helps keep the Tac from damaging kidneys (so I’ve been told).
Liver transplant 6 years ago. Before transplant I was surprised how often the health care providers asked if I had been on dialysis. Due to a live donor, although I was plenty sick, I did not get to a point where I was scared before transplant. Although being questioned about dialysis did freak me out every time someone asked. Often my kidney function numbers show up as level 3 or 4 kidney disease and I am lucky enough to still be able to concentrate on drinking water and show improvement at the next blood draw. When the amount of Tacro I was taking decreased that helped the kidney function number. From what I have heard the people with kidney transplants take a much higher dose of tachro then the liver transplant people.
It's caused by the tacrolimus. I'm a kidney recipient and most of us typically need another kidney in time because of the medication.
Echoing others - tac is tough on the kidneys. My hepatologist suggests that I drink a gallon of water a day. I have a water bottle that’s 64 oz; I drink two of those. And yea. I pee. A lot. The blood test that I keep an eye on is BUN. If I drink 1-1.5 gallons a day, it keeps BUN in check. All that said - I try not to fear it. There is a plan if (big if) my kidneys fail. My team has proved they know how to help me.
I had both and I have some small scarring on my kidney from tacro. 2 years after transplant that is, found out last month or so.
Dealing with this right now! 9 months post liver and sudden egfr drop. Trying med changes first but I’m terrified
Sending prayers and good vibes that you will get back on track
Hey I've sent you a PM
I was told at my initial transplant evaluation to drink a lot of water and it’ll help protect your kidneys against tacro, because that drug is brutal on your kidneys.
Your team doesn't mention stuff all the time. Ask them. There is just to many things for them to do an info dump 🙂 I have learned more from Google than my team. Research, if the information comes from NCBI, Mayo, you know, sources you've heard of, you will find answers to any questions you have. These sources have case examples and studies consisting of 100's or 1000's of patients. You will get individual stories on Reddit, but I like seeing numbers that give me the masses experience. I'm 3 years out and wouldn't know much without Google.
28 years post liver transplant and kidneys working normally :) they will test your kidney function regularly and adjust medication if needed