In Your Words: Optimistic by Design
Having lived with nephrotic syndrome for 37 years, Suzanne Hemphill strives to educate others about kidney disease.
I have been living with nephrotic syndrome since 1977. I was 16 years old when I was diagnosed. I think I’m a bit of an unusual case because we detected it early, which doesn’t usually happen.
At the time, I was in high school and a photographer on the yearbook staff. We had a deadline for the yearbook and I was up all night long on my feet developing pictures in the darkroom. When I got home that morning my legs were so swollen they looked like elephant legs. My mother took me to the doctor and they didn’t know what it was at first. I was put to bed for a whole week. Then they scheduled a biopsy for me at Emory University Hospital in Atlanta and that’s when I found out that I had kidney disease.
I never really let it affect me because steroids always worked. I’m blessed that I’m not on dialysis and I haven’t needed a transplant. After 35 years of being on and off steroids, though, my periods of remission started getting less and less. It got to the point where I was only in remission for a month and I would relapse right after I came off the steroid. It was just awful. I didn’t know what I was going to do.
Fortunately, I’m on the board of the Kidney Foundation of the Greater Chattanooga Area in Tennessee and one of our board members is a nephrologist. I found out that the Southeast Renal Research Institute (SERRI) was doing a clinical trial on a test drug. With some great effort, on my second attempt, I got into the trial. I’ve been in remission now for almost 16 months, which is just stupendous. I feel better than I have in 15 years.
They’re doing trials to learn more about the drug. They’re using it not just for kidney disease, but also for multiple sclerosis and several other things. It’s just fantastic. The steroids had quit working, so it’s been a Godsend. It’s awesome.
I’ve always had a good attitude and a bright outlook and I really think that makes a difference in how things go health-wise, but there have been a lot of periods of me not feeling well. I would swell so much; all that weight comes on so fast from the steroids. All of a sudden you gain 40 pounds. It’s just terrible, you feel terrible. So, it really has been a struggle over the past 37 years.
It is so important to catch this stuff early. One of my big goals for the kidney foundation was for us to be able to do screenings and a couple of years ago we got enough funds to have our own machinery to do them. Now we go out in the community and offer screenings so that we can help catch other people early. It’s very exciting.
An early sign of nephrotic syndrome is swelling in your legs. I know women especially don’t think a whole lot about swelling in their legs, but it’s something that people really should pay more attention to. Some of the other signs are that if you’re losing protein in your urine it will get darker in color and it gets foamy. Diabetes causes a lot of kidney disease, although that wasn’t the case for me. High blood pressure is another thing that’s bad for the kidneys.
I think it’s important to have a good relationship with your doctor. You want to have a doctor who will sit down and talk to you and you can ask all the questions that you want, and they’ll answer them in a way that you understand. Don’t ignore things because the sooner you can get treatment, the better off you’re going to be. I’ve learned that there are consequences to waiting.
You can lose 80 percent of your kidney function before you realize what’s going on, so it’s a huge deal to pay attention and get tested. The earlier you find out about it, doctors can help prevent things from progressing so quickly. At the moment I have 82 percent kidney function. That’s a fabulous thing, but you have to stay on top of it. There’s no doubt that’s the most important thing, and that’s why I’m so passionate about people getting screened. I really feel like part of my calling is to help the kidney foundation. I would have never thought about doing anything for it if this hadn’t happened to me. It’s a really important part of why I think I’m around.
Being optimistic is very important. I think if you get down about having a disease, it can cause you to be sicker. Be optimistic, and really be proactive too. I think you have to be proactive, if you’re not proactive you’re not helping yourself.
I want to educate other people as well. I went on a trip with NephCure to Washington, D.C. a couple of years ago to try to get legislators to increase the budget for the National Institutes of Health (NIH). I’ve also gone before the Tennessee Legislature to help save the state’s renal disease program. I think it’s real important to stay involved.
People should also really consider being an organ donor. It’s just incredible that you can do that; it totally changes a person’s life when they get a kidney transplant.
My whole adult life has been with kidney disease. It’s been a crazy road, but I’m still thankful. I have a really strong faith. I really believe that God’s going to take care of me, whatever it is.
I’m a graphic designer and I totally love life and I love what I do. The biggest thing that I’ve learned through all of this is how important it is to appreciate every single day. People who have never been sick, who have never had any kind of problem or anything remotely serious don’t have a clue how precious life is, and how wonderful it is to feel good. I have this personal expression that I say all the time: “Better is better.” Anytime I feel better, that’s what I say because it’s true. If you haven’t felt well for a long time, feeling better is a huge thing. There are some days I’ll be driving down the road and I’ll tear up and cry because I’m so happy to be alive and to feel good.
So, I always try to have a positive outlook because it makes things easier if you do. I think it’s all about how you approach things that makes life better. I thank God that I’ve been able to have a good attitude about things, even when it was terrible and awful.
I’m thankful today and have really been taking advantage of every terrific day.
Nephrotic syndrome (NS) is not a disease itself, but rather a set of signs and symptoms that result from damage in the kidneys’ filtering units (glomeruli). Damaged glomeruli allow too much blood protein to leave the body, leading to nephrotic syndrome.
Symptoms may include:
- High levels of protein in urine
- Low blood protein
- Swelling
- Less frequent urination
- Weight gain from excess water
- High blood pressure
- High blood cholesterol levels
Causes:
- Some of the diseases that cause NS occur only in the kidney. These include minimal change disease (MCD), focal segmental glomeruloscerosis (FSGS), and membrane nephropathy (MN).
- Sometimes, diseases that occur in other parts of the body can cause NS. These include diabetes, cancer, lupus, amyloidosis, and vasculitis.
Facts:
- NS is a common contributor of Chronic Kidney Disease (CKD) and responsible for 12% of kidney failure in adults and 20% in children.
- 3 out of every 100,000 adults are diagnosed with primary NS each year.
Males are more likely to be diagnosed with NS than females.
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