Melissia Baker was just 10 years old when her mother realized there was a problem. She took Melissia to the doctor.
A diagnosis of juvenile diabetes led eventually to kidney disease, a transplant, a rejected organ, and a new wait for another kidney.
According to the American Kidney Fund (AKF), kidney disease is increasing at a faster rate than any other noncommunicable disease in the United States. African Americans such as Baker have a higher risk for kidney disease than people of any other race. And nearly half of all cases of kidney failure are caused by diabetes.
Given that 96 percent of people with early kidney disease are unaware of it, the fund is pushing for more screening, as well as removing barriers for potential kidney donors.
We spoke recently with Baker, of Philadelphia, now 47 and the mother of an adopted son, and we follow with the perspective of Mike Spigler, the kidney fund’s vice president of patient services and kidney disease education.
I was 10 years old. I started going to the bathroom frequently. My mother noticed and took me to the physician. They checked my blood sugar. It was elevated. They decided I had juvenile diabetes, which is what they called it back then. Now, it’s known as Type 1 diabetes.
It took many years for it to progress to kidney disease – up until my 30s. The treatment was not as advanced as it is now. I did not have an endocrinologist until I was in my late teens or my early 20s. My mother did most of the research in treating and caring for my diabetes.
Later, my creatinine levels became elevated, a sign of kidney disease. [Creatinine is a waste product from the normal breakdown of muscle, excreted through urine and used as a test of kidney function.] My diminished kidney function lasted about 10 years prior to me going into full-blown, end-stage renal failure. But I was fortunate. At the point I was diagnosed, I was put on the organ transplant list. It took only months to receive a double organ transplant. I received a pancreas and a kidney from a deceased donor.
It went great for a while. I was able to go back to work, to become a foster parent, to be involved with social and community activities. Unfortunately, it lasted just 6½ years. The donated pancreas failed first. It took the kidney with it shortly after.
In 2012, I went on hemodialysis. I did it for five hours, three times a week at one of the dialysis centers in the city. But I found it to be very taxing on my body. I would leave dialysis and I would pretty much need to go home and rest for the rest of the day.
My doctor suggested that peritoneal dialysis may be a better option. That’s something you can do in the home. It uses the peritoneal fluid inside your stomach to clean your blood. I would do that every night while I was sleeping. It’s supposed to be a gentler process because you’re doing it every day. However, I found it was emotionally taxing and isolating. I didn’t have the support of a dialysis center. You’re responsible for maintaining your machine, your site, your medical supplies. I had a lot of medical supplies in my home. It really made my home feel like a medical center, and I felt like I never got a break.
After about eight or nine months, one of the centers in Philadelphia opened up a nocturnal program. It’s traditional hemodialysis, but I go three evenings a week and stay there from about 7 p.m. to 4 a.m. It leaves me with much more energy, and I’m able to have my weekends free. I can take short weekend trips and things like that.
I’ve been on the transplant list for 6½ years. And I’m hopeful I’ll receive the gift of life again.
Don’t be afraid. It can be a scary thing when you’re diagnosed. I didn’t know anyone else with kidney disease. But you have to educate yourself. Get as much information as possible. There are so many resources out there. Once you get involved with one organization, it tends to be a branch to getting additional information and resources. If you’re in a dialysis center like I was, it’s really helpful to talk to the center’s social worker. There are a lot of support groups.
Just keep talking about it. If you can’t advocate for yourself — sometimes you may not have the energy to do that — find a friend or family member who can advocate for you. Get involved with groups like AKF that can be a financial resource and an advocacy tool. Your voice will be the most important voice in managing your disease effectively.
It’s the Living Donor Protection Act of 2019. It would provide baseline, uniform protections for living donors. One piece of it would prohibit discrimination from insurers — life insurance, disability insurance, and long-term care insurance providers. Right now, they can either deny or limit the amount of coverage that they offer someone who has decided to be a living donor. Another piece would amend the Family Medical Leave Act to include living organ donation as a serious health condition, a reason for taking a leave. It’s really hard to tell how many additional kidneys this would translate to. But as many barriers as we can eliminate to making that huge decision, the better.
Unfortunately, dialysis has not changed much since its inception in the early 1970s. So one of the things we’re trying to do is figure out how to get more people transplanted. One promising development is that hepatitis C is now pretty much a curable disease. Let’s say that a deceased donor had hepatitis C, and the potential transplant recipient doesn’t. The thinking was always that you wouldn’t transplant to that person. But because the hepatitis C treatments are so good now, you can take the hepatitis C kidney and give it to a patient, and then give the patient the medication to cure them of hepatitis C. This opens up a pool of kidneys that we didn’t have before.
Also, there are some drugs on the horizon that will make it much easier for people to match with a kidney if they have high levels of antibodies. Right now, there is a concern that those could fight the kidneys once transplanted.
Another initiative is the Kidney X project, a collaboration between the American Society of Nephrology and the federal Department of Health and Human Services. The idea is to redesign dialysis by creating an artificial kidney – in effect, a dialysis machine right inside the body, or at least a wearable one.
The Kidney Health Initiative is looking at precision medicine and trying to apply that approach to treating kidney disease. Every year, most of the kidney community coalesces around a national conference, the National Society of Nephrology’s Kidney Week. In nine years, I’ve never left a conference with more hope, more optimism, than when I left this last one.