In October of 2022, my hero and good friend who was a perfect match, donated his kidney to me. I was blown away by how good I felt – BEFORE LEAVING THE HOSPITAL. After a two-month recovery I was on top of the world. I could give back to my family rather than only being on the receiving end. I was excited by the possibility to climb and ski again. My heart swelled at the opportunity to actively join in my son’s life as he grew. I would not just be a spectator tied to the restrictions from kidney failure. Unfortunately the excitement was short lived.

 

In December 2022, symptoms of FSGS returned and continued to worsen. By 2023, biopsies confirmed FSGS had returned. It was in the form of collapsing FSGS (cFSGS), a more rare and aggressive variation of kidney disease. This condition affects 1 in 1 million persons per year. In late March of 2023, a new chest catheter was installed. I began plasmapheresis, a multiple-hour plasma exchange procedure. It removes harmful antibodies from the plasma in hopes of eliminating the disease.

 

​Rituximab injections were initiated in tandem with plasmapheresis. Rituximab is known as a drug to treat cancer and it has also been shown to successfully target substances that can cause a negative immune response, like those damaging my kidney.

 

​After 3 months of treatment, kidney function still continued to deteriorate rapidly. Now in stage 5 renal failure. I took one more shot at it in June 2023. I became the first adult in Washington state to begin LDL Apheresis treatment. Like plasmapheresis, blood is pumped out of the body during LDL Apheresis. Over the course of several hours my blood is processed to remove cholesterol. For unknown reasons, my cholesterol is very high.

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​By late June 2023 my transplanted kidney failed and I had to resume hemodialysis. The failure was due to collapsing FSGS (cFSGS), a more rare variation of kidney disease. With the new diagnosis, University of Washington refused to consider me for a transplant, even though I had already received a transplant there.

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​My chances were further reduced after being diagnosed with smoldering multiple myeloma, a rare, slowly progressing blood cancer. Now the odds of me getting back on “the list” from conventional institutions like UW were approximately zero.