My Journey

About Polycistic Kidney Disease


Like others with an inherited life threatening disease, my kidney failure hasn’t been easy, yet has taught me patience, perseverance, trust, how to surrender, and so much more.

Update: I received a kidney from a deceased donor on Friday October 13, 2023. I am eternally grateful for that person’s sacrifice and ultimate gift. 

 

Original Story:  I was first diagnosed with Polycystic Kidney disease in October of 2009. I went to the Emergency Room for what I thought might be appendicitis due to the extreme pain I was in. So much so I fainted on my way out the door. After a CT Scan many cysts of various sizes filled with fluid were found, including the one that burst, causing the severity of my pain. I was then diagnosed with Polycystic Kidney Disease. I had never heard of this before that moment.

 

PKD causes my kidneys to be enlarged, weighing up to 10 pounds each, or more, and are being choked out by hundreds of fluid-filled cysts causing my kidney function to rapidly decline. These cysts can become infected and rupture, which is what happened in 2009 and has happened to me several times since being diagnosed. I look like I am in my third trimester of pregnancy because my kidneys are so enlarged. Carrying the extra weight is difficult.

 

With chronic illness, you normalize so many things most people won’t ever feel. You normalize high levels of pain or becoming so exhausted doing the smallest of tasks. You normalize needing to rest after taking a shower or doing the dishes or laundry. The many medical procedures and tests also wears a person down. People see you surviving with an unseen illness unaware of the pain and suffering you endure daily. They have no idea what you have done to normalize this new reality. (There are pictures below showing the progression of PKD. Some are graphic.) 

 

Polycystic Kidney Disease patients need to avoid movements and physical exercises or activities that may force them to twist their waist, impact their back or their kidney location. A kidney cyst can grow so quickly that it ruptures. A ruptured cyst causes horrific kidney pain, vomiting, fever, blood in the urine, and severe back pain. When a cyst bursts, it can take weeks to get over the sickness and pain that accompanies the rupture due to having to pass the sack of the cyst that ruptured in addition to the infected fluid inside the sack. Unfortunately, trying to stay active and stay working with these bursting cysts is what forced me to leave my wonderful, fulfilling job of 15 years when I was just 47 years old.

 

I am blessed to have been listed on the deceased donor kidney transplant list at Oregon Health Sciences University in Portland, Oregon since September of 2019. This motivated my search for a living donor via Facebook in August 2020. My plea for a living “Kidney Angel”, rather than waiting for a donation upon death, would offer me greater stability and longevity. Living donor kidneys usually last twice as long, have a higher rate of function than kidneys donated upon death, and offer the recipient a better quality of life.

 

I was not on dialysis at that time I was listed on deceased donor transplant list. We had high hopes I would be transplanted prior to starting dialysis. Due to unforeseen circumstances, like the Covid pandemic, that did not happen. I have now been on dialysis since April 13, 2022. Dialysis is very time consuming. With the help of my doctors and a fabulous support staff at my center, I go three times per week. The equates to over 15 hours a week on a life sustaining machine that cleans my blood of toxins and removes excess fluid that my kidneys can no longer filter for themselves. This is a necessary stop-gap that I am so grateful for, yet it isn’t the real solution which only a very special human can provide. I have a much better chance of avoiding rejection of a new kidney if I am not on dialysis for a long time.

 

The better option, and the point of this plea, is to seek out a “Kidney Angel”, a living donor. Seeking a live donor is personal, a deeply meaningful human connection, and allows me to be active in my own care. I hope you and I might embark on this adventure together soon.

PKD DISEASE PROGRESSION