Written by Priscila Kilgour
In 2018, I reached two milestones in my life: I celebrated my 80th birthday and the 26th anniversary of my kidney transplant. I am a registered nurse who worked most of my professional life in the operating room. I retired in 1998 to spend my time doing what my husband Bill and I enjoyed best: traveling, going to the theater, attending concerts and especially attending live performances of my favorite musical experience, the opera.
In 1966 I received a diagnosis of subacute glomerulonephritis from Dr. Kurt Lange, my nephrologist who took care of me until his death in 1989. All of that time I continued to work full-time in the operating room. Although my kidney function eventually went down to 25%, I was able to continue to work with enough energy because this condition happened over a period of many years, enabling my body to adjust.
The cause of my kidney disease was probably due to an undiagnosed strep throat (absent any history of high blood pressure, diabetes, etc.). However, I did have a history of untreated sore throats in the past. In 1965 I was pregnant and had pre-eclampsia which resulted in the tragic stillbirth of a child at almost nine months, which probably contributed to my kidney disease. My initial treatment was a year of heavy doses of steroids, after which I was diagnosed with chronic glomerulonephritis. After 23 years, my kidneys finally failed.
I continued to work as an operating room nurse until 1988 when I requested a transfer to an out-patient setting after sensing that I eventually benefit from a job less stressful and with more regular working hours. It was shortly after this (after a fishing trip in Canada) that I was informed by my nephrologist that I needed an AV fistula in preparation for hemodialysis.
I had an AV fistula created in the summer of 1989. Luckily my only sibling, my older brother Fred Padin offered his kidney to me. He is an Urologist living in Pennsylvania and at age 82 he is still a healthy, practicing physician. We had all the tests done and the health team was delighted to find that we were a perfect six antigen match…..almost like twins! Everyone anticipated an uneventful transplant with me taking only a minimum of immune suppressing medications. But fate would not have it, and five days after the surgery I suffered an acute rejection episode and in spite of all the health team’s efforts, I tragically lost my brother’s kidney. His loss haunts me to this day more than my loss because all I had to do was go back to dialysis.
After that event, I got calls from cousins all over the country offering to donate their kidneys. Unfortunately, they were not good matches or had medical conditions preventing them from donating. I am forever grateful to them for their generosity. After this tragedy I became closer to my brother and my relatives which resulted in many grand family reunions. I also had numerous calls from friends offering to donate their blood when I needed blood transfusions while on dialysis. In the 1980’s this was indeed a welcome gift.
In 1992, after three years on dialysis, I got a call that there was a deceased kidney available. Among about three other candidates, I was chosen to be the recipient of that kidney. It was March 19, St Joseph’s day that I finally got my kidney from a 19 year old boy whose family so generously gave me another chance at life. I had just turned 54 the previous month.
Here are a few thoughts that I have from my experience:
Never lose hope no matter how bleak your future may seem. While I was on dialysis I willed myself to think of my dialysis machine as a friend who was enabling me to get through the days between treatments. To make my treatments less stressful, I trained myself to insert my own dialysis needles using my left hand because my fistula was on my right arm (I am right handed) and to help prepare some of the equipment that I needed for treatment. After a few months I managed to make myself comfortable enough and grateful that I had dialysis to keep me alive.
Work for me was a blessing. It gave me the sense of purpose and worth, a knowledge of being needed and being capable of serving others. Some thought I would be eligible for disability retirement but this was never an option for me since I felt strong physically and mentally. I have to admit that the first months of dialysis were really trying but once I convinced myself that this might be my way of life, I seemed to get a second wind. I tried not to make my life a tale of woe. There were so many others who have to deal with more difficult challenges than me.
Since I had put myself in the transplant list, I knew that I had to be in very good physical shape in preparation for a possible kidney transplant. Instead of driving, I would walk the two miles to and from Church. At work I’d walk around the block or go up and down the stairs during part of my coffee and lunch breaks. I tried to banish the thought that if a perfect match lasted only five days, how long could a deceased kidney last? It was not easy but I managed to put a positive spin on my thoughts. I also considered taking a master’s degree in nursing. I was accepted in two colleges and thought I could do this on a part-time basis while on dialysis and working full time. This would have kept me very busy if my gift of a kidney had not come. And when it came, I was in very good physical and mental shape. This was 26 years ago.
All of the above would not have been possible had I not the support and love of my husband Bill. He got me through the most trying times and with my faith in God and the generosity of my donor family, I managed. We celebrated our 55th wedding anniversary last year and I hope that we will have many more to come.
I must mention that getting a transplant is not without cost. One must take the immune suppressive drugs for life. Secondly, I’ve had to deal with the after effects of several steroid infusions due to acute rejection episodes immediately following my first and second transplants. I had total hip replacements of both of my hips two years after my second kidney transplant. However, the quality of life that I have experienced as a kidney transplant recipient is without the constraints, discomfort and risks that dialysis imposes. For such a rewarding and happy life, I believe the price is well worth it.
I receive much help and support from two support groups to which I belong: TRIO Manhattan and the Rogosin Institute support group. By attending their meetings over many years, they have enabled me to feel a sense of belonging to a community where we not only support and encourage one another but also share information and experiences unique to our shared history.
This article originally appeared in July 2018 aakpRENALIFE magazine.