Kennebunkport resident Kristin Kuhn is looking for someone to step forward to become a living kidney donor. She has been living with polycystic kidney disease for many years, but recently her symptoms have worsened. Tammy Wells photo
KENNEBUNKPORT – Kristin Kuhn has been living with polycystic kidney disease since she was in her 20s. It is a condition that has passed down through her family. Some members develop it, some do not. Her father had it, a sister does, and her oldest son has been diagnosed with the disease.
Polycystic kidney disease is a genetic disorder that causes fluid-filled cysts to grow in the kidneys, according to the National Institutes of Health. It is a form of chronic disease that reduces kidney function and may lead to kidney failure.
Kuhn is 52 and the disease has advanced. The Kennebunkport resident has been on the deceased donor list for some time, but the wait is years long.
She has been looking for a living kidney donor for about a year.
She said she had few symptoms until a couple of years ago. Now, however, the symptoms are coming fast.
She has developed high blood pressure during that timeframe, a frequent occurrence attributed to kidney disease. She tires easily. After experiencing shortness of breath, Kuhn recently learned she has fluid in her lungs and has been diagnosed with congestive heart failure – all associated with her kidney disease.
Kuhn is at Stage 5 of the disease, and recently learned she will have to begin dialysis.
“It is a big decision for someone to make,” she said of donating a kidney. Her husband Ron, who shares her O positive blood type, is undergoing testing, and she is hopeful that others will email her for the information they would need to fill out an application on the Massachusetts General Hospital Transplant Center website.
Her email address is kidneyforkristin1970@gmail.com. The link to Massachusetts General Hospital Living Donor program is at www.mghlivingdonors.org/
She said some people have expressed interest, and but have not followed up.
Still, she is hopeful and noted her father, who has since passed away, was the recipient of a kidney from a living donor in 1994.
And even if someone has a different blood type and would like to donate, Kuhn there are programs. Typically called paired kidney exchanges, two potential donors who cannot donate to their intended recipients because of incompatibilities, but find they match others on the waitlist can, pending testing, donate – and so two people receive kidneys.
According to the National Kidney Foundation, about 100,000 people in the U.S. are awaiting a kidney transplant; just under 23,000 received one in 2020.
Kuhn, in a recent interview, said she is optimistic there will be a living donor for her, as there was for her father.
She belongs to a couple of kidney disease focused Facebook groups. “I see people going through the same thing I am,” she said.
She stays healthy as possible and is in the process of undergoing all the testing that needs to take place in preparation for a transplant – echo cardiogram, CT scan, stress test and more.
The longtime X-ray technician said she views dialysis, which will perform her kidney functions, as a “temporary plan until the real thing comes along.”
She and Ron have a blended family of four adult children and seven grandchildren, and she wants to have an improved quality of life with them. “Organ donation is so important,” she said.
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