We had Pete’s doctor appointment last Thursday, and I took a half day so that I could go. I’m pretty sure that everyone knows about the Best Doctor’s report (a benefit through work, they send his medical history to a leading nephrologist who writes what he thinks Pete should do). Out of that came a diagnosis of IgM-associated mesangial proliferative glomerulonephritis and a recommendation for Peter to try a cyclophosphamide.
According to Pete’s doctor (Ahmed), there was more scarring in his kidneys that he would have liked, but the biopsy did show that the Prograf Pete’s been taking (an autoimmune suppressant) has become toxic to his body. At his last appointment, he decreased Pete’s dose, and from that Pete’s kidneys have gotten better. Now Pete will be 100% Prograf free and taking Vitamin D supplements, because his parathyroid hormones are a little high (secondary hyperparathyroidism). Secondary hyperparathyroidism is common in kidney patients, and just means that his calcium levels are too low, so his parathyroid hormones are taking calcium from his bones to go into his kidneys and intestines. A lot of times kidney patients end up with bone problems, and that’s why. I just think that it’s weird that you can have hypothyroidism AND hyperparathyroidism, but Ahmed explained that the two areas are right next to each other in the thyroid and do different things. You can see I’m learning a lot from all this! 😉
Ahmed said he’s already doing 90% of what Best Doctor’s recommended, and it just confirmed what he had already diagnosed with Pete. He doesn’t recommend that we go with the cyclophosphamide just yet, and wants to see how things go with the Vitamin D, Aranesp (shot for anemia, also common in kidney patients), and no Prograf. Pete will still stay on all of his other stuff, but Ahmed is hoping that the toxicity from the Prograf is what was causing Pete’s fluctuating protein/creatinine levels. We’ll reevaluate in 9 months. We were considering switching to a Mayo doctor that Best Doctor’s recommended, but I met Ahmed and like him a lot. And he said that me, him and Pete were a team, so he’s sold me on staying with him for now!
A transplant will be the end result of all this, but all of the meds Pete takes are to lengthen the amount of time that that will happen in. Best Doctor’s said that if Pete’s protein/creatinine levels continued to go up the way they have been, a transplant would be likely in 2 years. Now that his number are falling again, Ahmed seems confident that the Prograf was the problem, which is great news, and that we’re shooting for 20-25 years. The longer we can put it off, the more technology that will become available—I just read that a lady had her kidney taken out from her belly button. Can you imagine???
Thanks for all of your love and support. I’ll be keeping you updated on everything, but no news is good news as far as I’m concerned! 🙂