Ed has experienced many things in his lifetime and shared many beautiful moments. He served in Vietnam, earned his college degree and married the love of his life, Linda. He also had a very surreal timeline running parallel to these moments. He lived with kidney disease during the time kidney transplants went from science fiction to reality.
Ed’s kidney disease started with painful attacks that Ed attributed to gout. The attacks started on and off again in high school and continued throughout Ed’s time in the Army. Ed also had poor eyesight which turned out to be keratoconus. Upon an exit medical exam from the army, Ed had high blood pressure and albumin in the urine, indicators of liver/kidney dysfunction, but was not told to follow up with a doctor.
After finishing his military service in Vietnam, Ed got married and finished graduate studies at Northern Arizona University. When a terrible gout attack left him nearly immobile, he became very concerned. As a student at Northern Arizona University with 16 units to graduate Ed was advised by his local doctor to immediately see a nephrologist in Phoenix as his condition needed prompt attention. Ed met with his nephrologist and had numerous lab tests. The conclusion was that his kidneys were in terrible shape, he was very sick and needed dialysis.
Ed considers this to be the true beginning of his transplant journey. It was the early 1980’s, and he was a regular at the dialysis center. Ed went three days a week after closing his business for the night. The staff tried to make things fun because they spent so much time there. Every Wednesday night, they would watch the TV show Dallas together. The regulars would have time to catch up on their lives and support one another. Reality would set in when they noticed that someone would stop showing up. It was sometimes a sign of improving health or a transplant, but it was often a sign of decline or worse.
Ed, like so many others, immediately began the search for a living donor. His mother was not a match for him but was a match for his sister, who was also burdened with kidney disease. Ed was placed on the waiting list. He had a couple of false alarms of donors who ended up not being a match. Finally, there was a match. Ed remembers his transplant surgeon with much reverence and respect. Dr. Van der Werf moved to the United States in the late 1960’s and established the Netherlands, Florida, and Arizona’s original transplant programs.
Ed’s 1st of 3 kidney transplants lasted for 14 years. His 2nd transplant also lasted 14 years. The 3rd transplant was in Dec. 2015 and is still working today.
Ed’s second transplant lasted for 14 years. In the last 3 of those years, Ed’s numbers declined again, as they did the previous time. IVIG was used to counter high antibodies and a former graft got infected requiring multiple surgeries. Luckily for Ed, the new rules came out regarding kidney transplants. A CPRA (Calculated Panel Reactive Antibodies) calculator helped kidney patients save time on the transplant waiting list. Ed was on the list 9 months before he needed dialysis. After 9 weeks of dialysis, Ed got his call and received the kidney he is thriving with presently. He was on dialysis 3 times for a total of 6 years.
Currently, Ed looks forward to his advocacy work with Transplant Community Alliance in Phoenix, AAKP, Zoom support meetings every week with Mayo and Banner transplant people, time with the Transplant Games Team Arizona teammates, and most importantly, valued time with his family.
Since Ed’s father had kidney disease, he started researching his family’s genealogy. He found links in every generation that he researched, showing nearly one hundred years of his family with kidney disease. Ed feels fortunate to be thriving with his sister who received a transplant from their Mother 36 years ago and still working today.
His Great-Grandfather and Grandmother arrived at Ellis Island from Northern Italy in 1900. Both died of Kidney Disease. Living in Seattle his father also died of kidney disease when Ed was 12 years old. At the time there were 4 dialysis machines in Seattle.
With the genetic testing with the Broad Institute he has finally found out the name of the family kidney issues. It is ADTKD—UMOD.
The best advice for new transplant patients is to educate yourself, speak up and take charge of your care with the educated guidance of your medical team.