Life, Our CKD Adventure, Pete

The Adventures of Pete and His Kidneys (Or, Diffuse Mesangial Proliferative Glomerulonephritis)

Peter is obviously a major part of my life. With Pete come his kidneys. They have a life of their own, and enjoy making me crazy with every flare up of gout, every blood test, and every urine sample.

When Peter and I started dating, he would make trips to a hospital in St. Petersburg for checkups with his nephrologist. I didn't really know what it was about, because he never explained it past "my kidneys make too much protein." That was enough for me at the time. He didn't look sick, and never felt sick, and never really talked about it, so I wasn't too concerned. I thought that it was minor. If Peter slept over the night before a lab test, he would bring a big jug that would go in my bathtub for his 24 hour urine sample. It was a normal thing to me. It wasn't until we were engaged and I connected the gout he was getting to his kidneys that I realized that we were dealing with something big and unpredictable.

What Pete has is Diffuse Mesangial Proliferative Glomerulonephritis. It's a disorder that causes protein to be lost in his urine, which he told me, and also causes his kidneys to be inflamed. Other symptoms he has are high blood pressure, the occasional bout of gout, high potassium, anemia, and hypothyroidism. For all of these things he takes an immunosuppressant, blood pressure medication, synthroid, and a low potassium diet. The newest addition to this is Aranesp, which helps his body produce more red blood cells so that he's not anemic.

The Aranesp freaked me out. Pete has to go once a month to get a shot, and for his first shot the nurse told him something that we hadn't heard before. In the last six months, Peter's kidney function has gone down to 30%, 18% lower than it was at his last appointment. Because his glomular filtration rate is 38, he is in stage three of chronic kidney disease, but at the lower end of it. Stage 4 begins at 29.

So we are working on it. Pete has been working out, and I have been scouring the internet for different things we can do. We will be seeing a nutritionist that can help with a diet that is kidney-friendly. We've also been working with Best Doctors, which is a service that my company offers, and a world-reknown nephrologist will be going over Pete's charts to make sure that someone didn't miss something.

Normally I wouldn't post crazy medical stuff about either of us, but so few people have what Pete has, I felt like posting something about it would up the chance of someone finding me, be it a doctor, or someone else that has what Pete has. And maybe they can help us with their experience with treatments and what we should be doing right now. So I'm sending this out into the Internet, and hopefully someone will find it.

And aside from all that Peter is fine, by the way. It's just his kidneys that don't cooperate and like to freak me out. And I'm always up for a challenge, even if it's winning a war against my husband's kidneys!