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Polycystic Kidney Disease (PKD) is an inherited disorder in which clusters of cysts develop in the kidneys. There is no cure for this disease. I was diagnosed with PKD in my early twenties and over my adult life my kidney function has slowly declined. About 4 years ago I was referred to the kidney transplant program at the University of Minnesota. Three years ago I was added to the kidney transplant list. At that time a number of people graciously volunteered to be tested to be a kidney donor for me. My sister Megan was found to be a good match and was selected as the donor. The doctors wanted me to get as much use of my existing kidneys as possible so my kidney function has been monitored since then and has now reached the point of needing a kidney transplant. Over the years I have had follow up visits with 4 different transplant surgeons at the University of Minnesota. The surgeons have always been concerned with the size of my kidneys. One of the surgeons estimated that my kidneys weighed in excess of 30 pounds. Because of the size of my kidneys the surgeons have decided that I will have to have 2 separate surgeries. My first surgery will be to remove my 2 existing kidneys. to make room for the new transplanted one. I will then spend 6-8 weeks recovering from that surgery. During this recovery period I will be on dialysis. Then I will have the kidney transplant surgery.
The University of Minnesota is one about 15 transplant centers participating in a Phase 3 surgical clinical trial called the Freedom-1 Study. This trial involves pairing a kidney transplant with a stem cell transplant. The ultimate goal of this stem cell treatment is to be able to receive a kidney transplant without having to take anti-rejection drugs for the rest of the donor recipients life. Megan and I have met all of the requirements to participate in the study and have volunteered for this trial. This is a randomized control trial. This means that some participants will get the stem cell transplant treatment and other participants will be in the control group, who do not. We have not been randomized yet but expect the randomization to happen in the near future. This is the link to study website if you are interested.
https://freedom1study.com/My first surgery to remove my existing kidneys is scheduled for Tuesday May 3rd.
