By Jean Mihich
One never knows what journey we will undertake in this lifetime. I must say that my journey as a person with kidney disease began in infancy and continues to this day. It has been a series of small steps towards awareness and understanding, which was first started by my parents who had me, a baby with renal problems. I was their first child and suffered from high temperatures, convulsions. They could not obtain a clear diagnosis of what was happening to their baby. Through one of the many small blessings in my life, they found a doctor in New York who diagnosed the reason for my illness as a blockage to the urethra. Prompt attention to the treatment of dilating the urethra helped to bring me back onto the path of wellness, but damage was done to my kidneys.
I must admit since I had to undergo these treatments as a child, I have no real memory of when I developed “white coats disease” from seeing doctors most of my young life. This fear proved to be a problem for my family since I had several family members who were barbers and wore white coats. According to my family, I cried every time I saw my grandfather and uncles in their white barber coats! I also must admit that I still have symptoms of “white coats disease” when seeing doctors, and needless to say, it increases my blood pressure. As all kidney patients know, that is not a good thing for your doctors to see!
Over my lifetime I have moved from sickness to “good health” and back again to slow and progressive renal disease. The disease has certainly had effects on my husband, parents, siblings, my in-laws, and of course, my body and mind.
It wasn’t until I was 37 years old, and looking down into the abyss that I was facing death if I didn’t take ownership of my illness, find the right kidney doctor, and get on dialysis. That was a rude awakening, but with the grace of my husband and my mother in law who was a nurse, I found the right doctors. With the special gift from my very generous and loving brother, I was able to get a kidney transplant with his donated kidney.
The gift of the living kidney donation was overwhelming on so many levels. Some are very hard to explain to tell family, friends, and most of all, my brother. I couldn’t believe what it felt like to be healthy with a semblance of “normalcy” in my life. I could resume work, travel, eat foods I loved, and take on all sorts of normal day to day activities.
I treasured this gift, and I had the most amazing renal doctor, who I adore. To this day, she still responds to my questions and curiosities about being a kidney patient. She taught me how to be the best advocate for myself, to listen to my body, and to heal mentally, physically and spiritually.
She is not just a renal transplant doctor; she is a healer and a cherished friend.
She and I kept this kidney going for 27 years on cyclosporine and Imuran, vitamins, and a positive outlook on life and wellness.
I was divested to leave her when I was faced with end-stage renal disease again and had to go back on dialysis. And yet, another blessing was in store for me as I was doing home peritoneal dialysis and on was on the wait list for a kidney. I got the call 2 years ago and received a cadaver kidney from a small child whose parents wanted their child’s organs to live on through another person. It was hard receiving a live donation from my brother, but receiving my second kidney from a deceased donor was much more difficult. I am grateful every day of my life, and to the child and the generous family for the gift of life.