Ellen's Story: Being Healthy While Having Kidney Disease

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Ellen BluestoneEllen Bluestone is a kidney transplant patient at Penn Medicine. In this blog post, she talks about her struggles with her diet while having chronic kidney disease. This story is not meant to tell you the type of diet that you should have (what didn’t work for Ellen might actually work for you), but to show you what she learned.

When I first found out I might need to go on dialysis, I was going to a doctor and a nutritionist who advocated a strictly vegetarian diet. Being the conscientious type, I immediately changed my eating habits, cutting out meat and sodium and eating only vegetables.

For the next year, I adhered to a strict vegetarian, almost vegan diet. During that entire time, I craved fish and eggs. I would literally get jealous of my cats when I fed them tuna. My body was trying to tell me something, but I didn’t listen to it.

The downward spiral

When I went to the Penn Transplant Center for my initial visit, the renal dietitian, Tiffany Donahue, told me that it sounded like I wasn’t getting enough protein. I’d been eating veggie burgers for protein, and she thought that wasn’t sufficient to meet my personal nutrition needs. She told me that I could include some high-quality protein, like eggs and fish—no surprise, in view of my cravings.

When I next saw my doctor, I told him what Tiffany said about diet, but he disagreed with her. By this point, I was completely emaciated and feeling very weak. I had lost much of my muscle mass. I asked what I should eat to gain weight, and he said “pasta.” He also told me that dialysis was probably going to be necessary.

I cried in his office. I knew I needed to make a change.

Making a change

It was during the visit to the home dialysis center that I saw the light.

I suddenly realized that my problem was malnutrition. I’d noticed at yoga that my legs looked different in the mirror—not only were they skinny, but they seemed to have changed shape—and just a few days before this visit, I discovered that a few of my back teeth had turned grey. When I left the dialysis center, I resolved that I would do two things: find a new doctor and figure out exactly what was wrong nutritionally, so I could take action. 

It was just a few days before the new year—a perfect time for resolutions. On New Year’s Eve, I made yet another resolution: I was going to start enjoying food again. Sick of eating the same old thing all the time, I dropped my guard and decided to eat something decadent. I plopped a hefty portion of fettuccini alfredo on my plate and started digging in. I’d forgotten that eating could be a pleasure.

Meanwhile, I made an appointment with Dr. Brenda Hoffman, a doctor who had been recommended by my cardiologist. While waiting for that appointment, I started reviewing my blood work and discovered that my parathyroid levels were quite elevated and my Vitamin D was low. At the advice of a friend, who pointed out that egg yolks are a great source of Vitamin D, I started eating one egg a day. I also started eating some dairy, as I was worried about my calcium.

I then had a consultation with Tiffany. This time, we had a full conversation, and she set me straight: I needed to limit my daily protein intake, but it was imperative that I meet the amount that had been calculated for me during our appointment. Tiffany pointed out that in my attempt to do the right thing, I was actually restricting protein too much.

When I met my new nephrologist, she explained to me why I’d started having problems with my bones and teeth. Most likely because of my elevated parathyroid or lack of Vitamin D, I was having trouble absorbing calcium. She put me on activated Vitamin D.

Dr. Hoffman was very positive, but also realistic. She thought it was a good thing I’d learned about dialysis, and said that, if things progressed, I would have to think about getting a fistula. But the fact is, she listened to me, spent time with me and made it clear that she cared. I knew immediately that I’d found the right doctor.

My advice for others

I learned three important lessons about diets and taking care of yourself:

1. Always get a second opinion. It’s important to see multiple specialists to make sure you’re getting the care you need and that you’re comfortable with your doctor.

2. Trust your body. It will tell you whether you’re being healthy or unhealthy.

3. Seek out a registered dietician to help you eat right and create a meal plan. Also, make sure he or she is an expert in nutrition for your specific condition.

Most importantly: Don’t think of yourself as sick. The way you view yourself can really influence the way you feel. We all have bad days, but remaining positive and hopeful might just make you healthier.

Interested in sharing your story? Contact transplant outreach coordinator, Margaret Leid, at margaret.leid@uphs.upenn.edu.

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The Penn Medicine Transplant blog features short postings with news about the transplant program at Penn Medicine, notices about upcoming events and health information. Subscribe to the blog and stay connected with Penn's Transplant Program!

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