Every morning people wake up and start their day. They take their kidney health for granted. I was one of those people. For me, that all changed in May of 2009 when I received a diagnosis of immunoglobulin A (IgA) nephropathy. 

I would like to share my transplantation journey for a few reasons: to encourage others to become more aware of their kidney health, to let other people with kidney failure know that there is hope for them, and lastly, to raise awareness of the need for organ donors and inspire others to become living donors. Here is my story.

In July of 1986 my wife, Carole, and I were living in Milwaukee. Just newly married, we decided we should apply for life insurance. I was denied coverage because I had a small amount of protein and blood in my urine. My physician suggested that I should have an intravenous pyelogram, which is an x-ray exam of the urinary tract. When the results came back, I was told that the doctors could not see anything abnormal in my bladder or kidneys. The amount of protein in my blood was not abnormal, and my overall health was fine. We moved a few times, and each time we moved I had a physical. The results were always the same. The doctors never seemed to be concerned.

In 1998, we moved again, and I went to see my physician for a routine physical. My blood pressure was 220/140 mm Hg. I immediately received medication to reduce my blood pressure and was prescribed more to help maintain it. No formal testing was done on my kidneys, and there was no diagnosis of any kidney issues. It seems that my doctor missed some signs that my kidneys were not functioning properly, which was probably causing my high blood pressure. The symptoms were treated—but not the cause.

In early 2008, we moved again. My new physician performed a routine physical and noticed the blood and protein in my urine. He was the first doctor to tell me that this was not normal and that I needed to see a nephrologist. He thought I had a problem with my kidneys. I went through some routine tests. At that time my GFR (glomerular filtration rate) was 56. My nephrologist told me that was not normal, and there seemed to be a problem with my kidneys; however, the direct cause could be determined only by doing a kidney biopsy. Because of the risk involved in the biopsy, I opted to continue to monitor my kidney function through laboratory tests. Over the next year, my kidney function continued to decline, and I was forced to have my first biopsy. The results revealed my IgA nephropathy. 

Over the next years, we tried various treatments, including a pulse therapy of prednisone and heavy doses of fish oil. I made some changes to my diet in an effort to help take any additional strain off my kidneys. I was hoping that perhaps I was one of those patients who would stay in IGA nephropathy remission. But as my GFR continued to decline, I realized that would not be the case for me. In December of 2017, we went to visit the Mayo Clinic in Jacksonville, FL, to see a nephrologist who specialized in IgA nephropathy. Ironically, my GFR that day turned out to be 21, which was the lowest it had been. I learned that I could now apply for a transplant. 

At that time, I knew my life was going to change and that we were looking at some difficult times ahead. I was lucky I had a good support network, starting with my wife, who was always there to support me mentally and physically. 

Dr. Thomas Pearson was the first transplantation nephrologist we met. He warned me that transplantation was a treatment, not a cure. I applied to Emory University Hospital, and after about 5 months I was finally approved to become a transplant recipient. 

I wanted to take whatever steps I could to find a living donor so I could avoid dialysis. Sharing your story with friends and family to help find a living donor is a pretty humbling experience. It is not easy to ask someone to donate their kidney to help save your life. I tried many different options to help find a donor. We had some friends who graciously agreed to be tested, but none were approved. 

My wife, Carole, agreed to be tested. She went through the same tests that were performed on me, and it took about four months for the testing to be completed. The stress test revealed that she potentially could have an issue with her heart. She could not be approved as a donor unless she had a heart catheterization. The test was done, and the results were negative. She was approved as a donor, and now we could officially be listed in the paired exchange program. About nine months later we were notified that a matching donor was found and that our surgeries were being scheduled.

On July 18, 2018, Carole had her kidney removed, and on July 19, I received my new kidney. After three days, we arrived home together. 

Thanks to our friends and family who were there to support us, we were able to spend our recovery days at home without any worries. The recovery went well for Carole. I had some challenges, including an acute rejection about three weeks after receiving my transplant. I was admitted back to the hospital to receive a thymoglobulin treatment, after which I was released and my kidney seemed to be working well again. 

It took a while to recover from the treatment. Eventually, I started to feel better as the doctors adjusted my medications. It has now been a little more than a year since I received my transplant. There have been some ups and downs, but overall, I am very lucky to have been able to receive my new kidney, and to be here to share my story. Over the past few years, I have learned a lot about IgA nephropathy, its causes and potential treatments.             

I would like to encourage your readers in the medical professions to share as much information as they can with their patients. Learning more about their disease will help them understand what their treatment options are and what they can do to help live with their disease. 

About the author: Stuart Miller

Stuart was diagnosed with IGA Nephropathy in May of 2008. Making some lifestyle changes and with good care from his doctors Stuart was able to manage his IGA until July of 2018. Thanks to his wife Carole and the Paired Kidney Donor Exchange Stuart was able to have a preemptive transplant at Emory Hospital in Atlanta.  Stuart and his wife own a Wholesale home décor business. When is not working he enjoys spending time with friends, cooking, and his two dogs (Theodore & Oliver) and following his favorite sports teams from his hometown, Boston. He is an ambassador for AAKP and an advocate for NKF.