In March of last year my husband was feeling really tired. Nothing else was wrong; it was just hard to get up in the mornings and he had little energy during the day. He had a new job, so we figured it was stress plus our tendency to stay up late talking and watching movies. One day he felt faint at work and asked me to drive him to our primary care. They did one little blood test, and the next thing we knew, the doctor came in, sat down, and told us my husband’s kidneys had stopped working. He told us to go straight to the nearest kidney clinic in the next town over and hurry. Once we got there, they told us to skip the tests and go straight to the ER. Once there, they immediately admitted him to the hospital and started him on dialysis. This was all very shocking and confusing and sudden. We were scared, we had no idea what was going to happen to him, and we weren’t getting many answers.
In the following months, after we were finally able to get him home from the hospital, we had to learn a lot about the kidneys and how to deal with kidney disease. We started off with 5 a.m. trips to the hemodialysis clinic three times a week. Sometimes I was kept waiting long past the time his treatments were to have been finished. They’d finally wheel him out and tell me his blood pressure had bottomed out. He looked like the life had been drained out of him, and he couldn’t even carry on a coherent conversation with me until he had slept most of the day to recover. He told me his treatments were terrifying and no one would explain to him what was happening when his blood pressure dropped and he faded out. It scared me to see him that way, too.
We decided to switch to peritoneal dialysis after the cheerful spokeswoman told us all about how he’d have more free time, and we’d be able to do treatments at home, and it wouldn’t be as harsh as hemo. He’d have more energy and be able to eat a wider variety of foods. We optimistically thought he’d be able to carry on with working a regular schedule. Turns out he had to be hooked up to his cycler every night for almost 12 hours. He was able to spend less time working and eventually had to resign. We have a whole room full of boxed supplies, we can’t travel, we have to scour every nutrition label at the grocery, he has to take a page of medicines while I have to give him shots, and he’s still tired and in pain at least once every day. Not to sound all negative, but sheesh. My husband thinks he might have preferred hemo.
I can’t count the times, during all of this, that my husband and I turned to each other and said, “I wish somebody had told us that.” From what the kidneys actually do for the body, to what the different treatments really involve, it’s amazing what we weren’t taught beforehand. I keep thinking that maybe in that Health class we took during high school they could have told us about organ function or nutrition or common medical problems instead of just trying to convince us that abstinence is for winners. Maybe in Biology they could have explained what the kidneys do and why instead of having us dissect that smelly frog for no reason.
A lot of people don’t seem to have a good idea of what kidney disease is like for those who have it. My husband would occasionally hear, “Hope you get better soon!” and just cringe because that well-wisher had no grasp of what he was dealing with. He’s struggled against feeling depressed and angry about it, but what did make him feel better was reading the I Hate Dialysis forum. He would stay awake during his treatments at night and read about people going through the same experiences he was. It’s a great place to get information on what dialysis is like for those who have to do it, and for those who are going to begin dialysis it’s a good place to get some answers.
Nowadays, having become experts in dealing with dialysis and having remained surprisingly positive throughout it all, my husband and I eagerly await the call from a transplant group that says they have a new kidney ready. We’ve probably got a couple more years to wait yet. There’s a ton of information to absorb about the transplant process as well. I never considered organ donation before, and I bet a lot of people don’t. The whole idea was just a little squicky to think about I guess, and I didn’t know anything about it. Now, though, I don’t think there’s any reason not to register as a donor. If I can make better the lives of people like my husband who are having a rough time and can’t live the lives they want, why not? And one can even donate a kidney and live perfectly normally afterward since everyone’s got two.
The National Kidney Foundation has a great deal of information on kidneys, kidney patients, and donation. Take a look. And if you want to learn more about becoming an organ and tissue donor, check out donatelife.net or organdonor.gov.