The Biopsy Test Results are Back

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! 🙂

The Family Plot

Most families don’t have a family plot. Mine does. It’s at the Greenwood Cemetery close to downtown Orlando, and my family has been buried there since the 1930s. It’s on the first hill as you drive in, and family legend has it that J. Ray Arnold purchased the plot under the conditions that no other families would be buried on the hill in front of them, so there would be a clear view of the lake, which didn’t end up happening and really angered Uncle Charlie.

We were there this weekend for Uncle Charlie’s funeral, and every time I visit it’s surreal. The extended Arnold family doesn’t get together for much aside from funerals, and being there makes me think of all the funerals that happened before and the ones to come. At least four generations of Arnolds have visited that same spot for the last 70 years, and there’s something comforting about that. Uncle Charlie took a lot of pride in the cemetery and making sure that the city keeps up with the grounds around our plot. Uncle Charlie and my Papa were both golfers, and at Papa’s funeral in 2005 we dropped Titlest golf balls into the grave site. It was the only ball that he would play with. They loved to play golf together and were hustlers on the course. My cousin Jeff, Uncle Charlie’s son, said that in going through Uncle Charlie’s things, he found a score card from 1947 with the score of 59.

Any funeral is difficult, but seeing the eldest Arnold man be buried is particularly tough. Papa and Uncle Charlie really tried to keep the family together, and now that they’re gone I don’t know what will happen. I’m not particularly close with my second cousins, but at least I know them and we get along and have decent conversation. We all spent Saturday night together and I know I would have been friends with my Orlando cousins if I had lived here.

When Uncle Charlie graduated from high school, his graduating class had 9 girls and 6 boys. Three of the “boys” lived til their 90’s, and now there is only one left. He spoke at the funeral, and it was really the highlight of the service for me. Can you imagine being friends for 80 years? As soon as he started speaking I realized that it was a once in a life time chance to hear what he had to say, so I busted out my iPhone to record his memories of Uncle Charlie. Here is the link, and if you listen, make sure to turn it up loud because it’s kind of hard to hear.

Rest in peace, Uncle Charlie. I can’t wait until we meet again.

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