By Michael Mittelman
I am a Philadelphia area native and graduate of the University of Pennsylvania and Temple University with a rare disease diagnosis of FSGS (Focal Segmental Glomerular Sclerosis). I have been on dialysis and survived three kidney transplants. Somewhere along the way I also picked up a neurologic disorder and a few skin conditions. Recently, I was diagnosed with two more autoimmune disorders — ulcerative colitis and Crohn’s.
According to UNOS (United Network for Organ Sharing), as of February 27, 2019, there were 94,810 people in the United States waiting for a kidney transplant. Think about that statistic for a moment. Let’s put that into perspective. Lincoln Financial Field, home of the Philadelphia Eagles, has a seating capacity of 68,532 people. The capacity with standing room increases to only 69,144. The number of people waiting for a kidney transplant is 37 percent greater than the number of fans that can fit in the Eagles’ football field. Some of those people are on dialysis, and some are not. Some of those people are senior citizens, and some of those people are children. Kidney disease does not discriminate by age, skin color, socioeconomic status, or political party.
“STAY UPRIGHT AFTER TAKING YOUR PILLS”
People can face kidney disease because of high blood pressure or diabetes, while other patients have lupus nephritis. After kidney failure and transplant, which disease becomes the patient’s priority? The anti-rejection/ immunosuppressant drugs that I take make me susceptible to colds, viruses, etc. The drugs have side effects. In my senior year of college, I had a massive ulcer in the duodenal area that was sitting on a large nerve. I could not figure out why I was having so much back pain, why I could not sleep or keep food down. As it turned out, the ulcer was caused by taking my pills and then lying down too quickly. That was the diagnosis. Stay upright after taking your pills. That was before the Crohn’s but shortly after being diagnosed with epilepsy.
QUESTIONS ABOUT MEDICATIONS CONSUME PATIENTS
I constantly worry about the interactions between medications, I worry about what I eat before and after my medications, and I worry about new medications introduced into my routine. Why? I worry how drugs might interact with my kidney medication. I worry about my kidney. Is that more important than managing my Crohn’s and UC? Should it be? What about my epilepsy? Should I take another biologic? Should I add another new immunosuppressant? If there are common comorbid conditions that kidney transplant patients have, how might we create medications that do not make patients choose? Might we create combination products that treat more than one condition at once? If so, would this hamper clinical trial enrollment or the experience of patients in trials? These are the types of problems that I think about, and I hope you will do the same. Having a transplant is all encompassing, so how might we make it easier for patients to manage their diseases and adhere to the medication regimen? Let’s think big, and let’s coproduce solutions. Having a transplant is all encompassing, so how might we make it easier for patients to manage their diseases and adhere to the medication regimen? Let’s think big, and let’s coproduce solutions.
MICHAEL MITTELMAN is a patient-driven design, experience, engagement, and outcomes consultant. He is Chairman of the American Living Organ Donor Fund, a PCORI ambassador, and former patient editor of The BMJ.