Learning I Had Kidney Disease
My name is Ellen Bluestone, and I'm a kidney patient at Penn Medicine. Like most of you, I’ve been through the twin challenges of finding out that I have advanced chronic kidney disease and registering with the Penn Medicine Kidney Transplant program.
About 10 years ago I discovered I have kidney disease. I had no idea there was anything wrong with me, as I was extremely healthy and fit. Luckily, my condition was discovered through a simple blood test.
At that time, I had stage III chronic kidney disease and was told that it was unlikely to progress. And indeed, it didn’t, until around three years ago when another blood test showed that my creatinine had suddenly jumped. It was at that time that my nephrologist told me that I would probably need dialysis within the next two years.
Learning I Was “Sick”
Learning I’d need dialysis down the road was, of course, rather shocking news. Overnight, I went from thinking of myself as perfectly fine to thinking of myself as sick.
I thought back to the time when I had sat with my dear friend, Eileen, while she was having a dialysis treatment in a New York hospital, trying to imagine how hard it must be for her to sit still for such a long time while her blood was swirling around in a machine. Ironically, it was the same day Eileen called to say she’d had a kidney transplant that I received my bad news.
For the first few months, I was thrown off balance. My life was going to change radically. When would I have to start dialysis? Would I be able to get a kidney? What if I couldn’t? What was going to happen to my future? Would I have the chance to see my grandchildren grow up? Would I have the chance to write the books I’d been hoping to write?
No one ever knew for sure how I got kidney disease. I wasn’t aware of anyone in my family having it. By default, it was assumed that I got it from a medication I’d been taking several years ago.
More Bad News
Just when I started to come to terms with the dialysis and began looking for a live donor, I got even more bad news: I had breast cancer. Needless to say, I gave up on the idea of searching for a kidney donor. I wouldn’t be eligible to receive a kidney while I was undergoing treatment.
Besides, I had something else that was more pressing—at least for the moment.
I cried for an entire 24 hours after receiving the news. Cancer! . . . I had lost both of my parents, in their fifties, to cancer. Yet, that was a long time ago, when treatment was far less advanced. My chances of survival were good.
I was diagnosed with ductal carcinoma in situ (DCIS), a non-invasive Stage 0 cancer. I would have been scared, but my younger son, who’s a radiologist, was very positive, and said, “Mom, a lumpectomy is small potatoes compared to a kidney transplant!”
The “small potatoes” still lingers in my mind. In fact, that little phrase is what got me through the surgery and radiation—together with the fact that my gynecologist agreed, saying that my kidney situation was the greater problem, the thing I needed to focus on
Last May I had a lumpectomy and then started radiation treatments. I got through the whole thing with flying colors. In fact, I had expected to get tired from the radiation and didn’t. Something had made me strong, and I was beginning to understand what it was.
I’d gone through a process of great personal growth in dealing with kidney disease. Adjusting to the reality of my illness had forced me to look fear in the eye and take charge. I realized, in retrospect, that I’d gone through a process of grief—a process akin to the stages of grief one goes through when a loved one dies. I had faced my own mortality.
Cancer was small potatoes. And I guessed that if I could view cancer in that way, I had certainly grown as a person. I saw the bright side—that my cancer had been detected early, and I would be fine.
It’s now almost a year since my lumpectomy, and I have to say that I feel much better than I did before the cancer. My numbers, which had gotten worse after the operation, have improved and remained stable for the past eight months.
At my last check-up, I mentioned to my nephrologist, Dr. Brenda Hoffman, that friends had told me that I look like the picture of health.
“People don’t even think I’m sick!” I exclaimed.
“You’re not,” she replied. “You’re healthy! Don’t even think of yourself as sick!”
Well, to tell the truth, I don’t. Not anymore. In fact, I feel not only healthy but renewed—both physically and emotionally.
It’s because of this that I’m so excited about having the chance to write some posts for the Penn Medicine Kidney Transplant Blog. I know what it’s like to find out you have advanced kidney disease; I know how frightening it can be. And I also know that it’s possible to turn things around and stop feeling sick, demoralized, and hopeless.
I’ve dealt with the grief and fear of facing a serious illness and have found ways to get through it. I’ve found a nutrition and exercise plan that works for me, and have made changes in my life so I’m not under quite as much pressure (at least, not always!). Most of all, I’ve developed a truly positive attitude.
Being a teacher and a writer, I’d like to use this blog to help you all achieve the same—and to have fun in the process. So stay tuned.
Interested in sharing your story? Email Margaret.Leid@uphs.upenn.edu.
Find out more about kidney transplant support and resources at Penn.