Question about immunosuppressive drugs

[WCoop]

My brother in law had a heart transplant three years ago. He was on tons of immunosuppressive drugs, of course. These meds took a great toll on him. He didn't even look like the same person for the longest time. In the long run (only two years) the meds destroyed his kidneys and he died of acute kidney failure.
If this is the legacy of those drugs then how is it that kidney transplant recipients can manage? 

[cattlekid]

It's a real balancing act.  I am a little over two years post-transplant and I still go for monthly lab work and will do so for the foreseeable future.  I take three anti-rejection drugs (prednisone, mycophenolate and tacrolimus).  The tacro is the one that is nephrotoxic so I have a very strict target level for that medication.  I started by taking 4 mg twice per day right after transplant and I have settled in at 1 mg twice per day at this point.  If my tacro level is off by even the slightest little bit, my coordinator will call me the minute they get the results and have me change my dosage the same day.

[WCoop]

I really don't understand how my brother-in-law got in such bad shape. He went to all of his appointments. He moved next to the hospital for a year. And it is one of the top hospitals.
After the way things went for him, it was pretty scary when they called me to say my kidneys weren't doing well. The first thing out of my husband's mouth was "You are not getting a transplant". But we'll cross that bridge when we come to it.

[cattlekid]

How was your brother's health to start with (other than needing a new heart)?  And I'm wondering if age may be a factor.  I was only 40 when my kidneys failed and I was 42 when I received my transplant.  I had no other major health concerns other than mild ulcerative colitis and a tendency to hereditary high cholesterol. 

I am wondering if it's like my husband's experience with gastric bypass surgery.  We know someone who had gastric bypass and is in extremely ill health since her surgery.  My husband, on the other hand, has lost 90 lbs, is off all medications and has become a distance runner.  I was really scared about him having the surgery based on our other acquaintance's experience.  I made him discuss her symptoms with all his doctors (without mentioning her by name, of course) and they all said that her case was very unusual, which gave me a slight amount of comfort.

I really don't understand how my brother-in-law got in such bad shape. He went to all of his appointments. He moved next to the hospital for a year. And it is one of the top hospitals.
After the way things went for him, it was pretty scary when they called me to say my kidneys weren't doing well. The first thing out of my husband's mouth was "You are not getting a transplant". But we'll cross that bridge when we come to it.

[WCoop]

The only health issue he had was his heart. His doctors were well aware that his kidneys were dying. They are the ones who said it was because of the drugs. It just seems counterintuitive to me that the medications that keep you alive also kill you.

[monrein]

The immunosuppressive drugs are very hard on the kidneys and that is one of the main reasons that the levels just be so carefully monitored. The drugs harmed my first transplant in the end but it lasted a trial of 23 years and those were healthy, productive and fun years for me. I'm seven years into my second transplant and am hoping to continue with my current excellent health for a long time to come. Transplantation has been very successful for me and my life during my six years of dialysis was certainly tolerable but of very poor quality compared to transplant. I do try hard to take the best possible care of myself including exercise and eating only healthy foods. I've been lucky for sure and also hope that I've made some good choices and decisions along the way. All medical interventions weigh risk against benefit. I'm so sorry that your brother in law got the brunt of the risk part of the equation.

[coravh]

While the tacro can be nephrotoxic, it does sound to me as though there was a lot more going on. The renal issues from the tx drugs are typically very slow. Giving you lots of time to look at options (drug changes, other changes to prolong kidney life, dialysis options, and another transplant) and decide what to do. If it actually was acute kidney failure (rather than the "normal" chronic), then something else was quite possibly going on. Was your brother in law not eligible for dialysis at least in the short term?

I can tell you that I have had nephrotoxicity from the prograf. The first time was at about 18 months post kidney. So my drugs were switched. Then, 6 years after the kidney tx I also got a pancreas and was put back on prograf. Again, my creatinine started creeping up, and by about 14 months, they opted to let me switch off the prograf again. I am now almost 13 years post kidney transplant and about 7 1/2 years post pancreas transplant. Both organs still doing well (knock on wood). Kidney failure does not have to kill you, and I found transplant far superior for my health compared to dialysis.

[WCoop]

Thank you to everyone for the responses. It's nice to hear the stories of improved quality of life. It instills hope. 
Corahv the reason it was acute was the he had to have an imaging study of his heart which required contrast dye two days before he died. When he went in for the test his numbers were not good enough. So they put him in the hospital and got his levels up. But it wasn't enough apparently.

[coravh]

Thank you to everyone for the responses. It's nice to hear the stories of improved quality of life. It instills hope. 
Corahv the reason it was acute was the he had to have an imaging study of his heart which required contrast dye two days before he died. When he went in for the test his numbers were not good enough. So they put him in the hospital and got his levels up. But it wasn't enough apparently.

That explains it. They dye can be hugely toxic. Recently I had to have an angiogram and my nephrologist and cardiologist got together to make sure I would be ok. My lasix was stopped a few days before (to keep me hydrated), and then I was kept in hospital for 24 hours on a saline drip to keep me even more hydrated. And I had labwork done the day before, the day after, and then another 2 days after that to monitor my kidney function. Luckily, everything stayed stable.