Living With ESRD

by David Goldman 

That’s what it’s called – ESRD. It’s an acronym for end stage renal disease or, kidney failure, and here’s just a little background. 

The latest figures I could find show that a little over half a million people in the U.S. have ESRD. The two major causes being diabetes, which accounts for about 37%, and hypertension (high blood pressure) which claims just over 24%. The other causes are diseases of the kidneys and urinary tract. Out of these half million, about 80,000 die every year. ESRD can be treated with dialysis or a kidney transplant. Dialysis patients live an average of five years. A lot of dialysis patients actually die from heart failure. When your kidneys fail you don’t process the fluids you’ve drunk Dialysis removes those fluids along with the toxins that you no longer can process out, but this is very hard on the heart. Thus, the heart problems.

A kidney transplant can add indefinite time to a person’s life. A working kidney takes the place of your broken ones and is always a better option for keeping you alive than a machine. Obviously, the preferred method of treatment is a kidney transplant, but there are not enough kidneys to go around. You can obtain a kidney from a living donor, provided they match the essential criteria, or you can receive a kidney from a cadaver. For a cadaver transplant, the kidney must match the same way a living donor’s kidney would. You’d think there would be a plethora of cadaver kidneys but for some reason, people think when they’re dead they’ll still need their organs.

I am very lucky. Overall, I feel pretty good and I’m handling dialysis well. I’ve been on it now for seven months. There are a couple of recent additions at my dialysis clinic, but I’m still a newbie. I thought by now I would have had a transplant because I was very fortunate and had several friends and relatives volunteer to donate. The best match (blood type and other blood factors) has been determined, but I had to pass some non-kidney related medical hurdles before being okayed for surgery and my potential donor must as well. The wait has been a little frustrating. My expectations were that it would be done relatively quickly – within three or four months of starting dialysis. I am however, still fully confident that I will have the transplant within a few months.

There are two types of dialysis treatments: hemodialysis, which is what I do, and peritoneal dialysis, which is less commonly practiced in the United States. Hemodialysis is normally done in a hospital or clinic and medically trained professionals administer it. It is most commonly done through a fistula in the arm. For the patient, it’s a simple procedure. You get two tubes hooked up to you. One takes the blood out of your circulatory system, goes into the dialysis machine where it gets filtered, and then goes back into you through another tube. There’s no pain and you don’t feel anything.

But enough of the technicalities. For me, there are three main drawbacks to being on dialysis. One is simply the time commitment. I have dialysis every Monday, Wednesday, and Friday, for three and a half hours at a crack. With travel time, that’s close to five hours on each of those days that I’m married to the machine. It’s a lot of time and it definitely alters your life. I’ve gone out of town twice since I’ve started dialysis and both times I had to arrange to get treatment where I’d be. This past Wednesday as I was leaving the clinic, the nurse said she’d see me Friday. I said I wouldn’t be there. She asked why and I said I just felt like taking a day off. It took her a minute to realize I was kidding, but that’s really how I feel sometimes. Once in a while you just want to take a break, but you can’t.

Then there’s the fluid restriction. Going from Friday till Monday is my longest stretch between treatments and by the time I come in Monday I can feel the fluid that’s built up in me. Remember, when your kidneys don’t work you don’t pee, or you pee very little. Given my size and weight, my nephrologist wants me to gain no more than 2-5 kg (4.5-11 lbs.) of fluid between sessions. That may sound like a lot, but pick up three half liter bottles of water. That’s how much I’m allowed to consume in fluids each day. And that’s all fluids combined, not just what I drink. It includes fluid in fruits, vegetables, and all other foods.

After my pancreas transplant my doctors told me to drink lots and lots of water. They were constantly making me drink. Before this round of kidney disease I was drinking close to a gallon of water a day. So this three bottles worth a day is tough to get used to. Each night I have a root beer with dinner, and I always save it until I’m done eating. While I’m drinking it I tell Debbie it’s the best part of the meal.

Then there are a bunch of foods I can’t eat or must eat in very limited quantities. Renal patients have to avoid sodium, phosphorous, and potassium. Sodium is the toughest to avoid. It’s in abundance in literally all processed foods and soups, so they’re all out. There are high levels of it in most snack foods, deli meats, hot dogs, cheeses and more. Honestly, most people would benefit if they eliminated these delicacies from their diets, so adhering to a low sodium diet just makes me feel like I’m following a healthy diet.

Potassium is to be avoided because when it builds up it can cause irregular heart rhythms, and the heart is already being put under a lot of stress by the dialysis itself. Some of the potassium laden foods to avoid are oranges, nectarines, raisins, bananas, honeydew, tomatoes, pumpkins, avocados, spinach and asparagus. Sometimes it feels like there’s nothing left to eat.

Phosphorus is the other mineral to be stricken from the diet. This means limiting all dairy products, colas, nuts, and beans.

So, all in all my diet is now quite bland and I have very little to wash it down with. But I do get to eat quite a bit of protein so that’s a good thing. When I had ESRD back in the 80s the science was different and I had to severely limit my protein intake. I found that next to impossible. Now, the main course is easy to choose, but it’s the side dishes that are difficult. I’ve eaten a lot of plain brown rice, white rice, and noodles with a bit of butter.

There’s a fourth element here, an emotional one. If you were to see me, you’d never guess I had a problem. But having ESRD does begin to weigh on  me. When I wake up in the morning, the first thing I think is, is today a dialysis day? And it goes on from there. I have to think to make sure everything you consume is safe for a renal diet. Because I expect to have a transplant, I feel an obligation to keep myself as healthy as possible so the surgery is successful. I owe it to myself and to my donor. Further, when I  talk to someone who knows me, the first thing they ask is how am I feeling. I know their thoughts are well intended, but the ESRD starts to become a part of my identity.

A lot of people feel sick and can become very low functioning while on dialysis. So far I’ve been lucky. Overall, I feel good. I get tired easily and feel a kind of whole-body weakness, but other than that I feel okay. I’m also fortunate because I work from home so I make my own schedule. If I had to maintain a normal 9-5 schedule it would be difficult as I get really tired during the afternoons. Often, it’s to the point where I have to take a nap.

So this is a glimpse into my life with kidney disease. I think most of us know, or have known someone on dialysis. It is a life saving process that requires, time, commitment and patience, but I am certainly grateful that it exists.