Kidney Transplant Transplant Services

A long journey with a happy ending

Linda, husband and dog

My journey to kidney transplantation was a decades-long one. I was first diagnosed with kidney damage caused by the auto-immune disease “vasculitis” in the 1960s, while living in the Washington D.C. area.

I spent three months in the hospital under the care of a doctor who said he had treated “a few of these cases.” Back then, few doctors really knew much about auto-immune diseases. We arrived at this doctor after seeing quite a few others who couldn’t help. At the time, the doctor said the vasculitis had damaged my kidneys, and that their function range was 30% to 50% of normal.

Imagine my surprise when, after being transferred to California in 1968, we arrived at Stanford Hospital & Clinics to find there was an entire department devoted to auto-immune diseases!

My husband chose his new job assignment in part because of the proximity to Stanford, and this move proved to be a wise one, because after the move to California, the disease became active again. I had more hospitalizations, during which I was cared for by Dr. Hugh McDevitt and the Immunology Team. 

More kidney damage had occurred, but the disease finally went into permanent remission through treatment with a very powerful (honestly, I was miserable) but effective combination of Cytoxan and steroids.
 
For years I was classified as a patient with renal impairment, but continued a reasonably normal life.  But when I entered my 60s, my kidneys went into decline. I was shocked at the sudden and surprising news that I was in End Stage Renal Disease (stage 5) and was being referred to a Nephrologist. It was time to take action!

I contacted the Kidney Transplant Department at Stanford Hospital & Clinics and was preapproved and placed on two lists: one for a traditional kidney transplant (seven-year wait) and one for an Extended Criteria Donor (ECD) Transplant (a three-year wait).  

Meanwhile, through careful management by my Nephrologist, Dr. Toby Gottheiner, and dedicated work on my part to stick to the Renal Diet, I achieved my goal of staying off dialysis! Before starting with Dr. Gottheiner, my creatinine had reached up to 4.4. At the time of my transplant, it was down to 3.6.

I never explored a live donor option, but perhaps might have if my decline had continued to the point where I needed dialysis. Instead, I went straight to a pre-emptive ECD transplant.

Getting Ready

I supplied a tube of blood once a month, for typing and crossmatch, and that was encouraging, because I knew I was under current consideration. I also joined several support groups prior to my transplant – Trio (Transplant Recipients International Organization), which meets once a month in Mountain View, and the Bay Area Association of Kidney Patients , local sponsors of informational seminars on all aspects of kidney disease – and I learned much from those who had already experienced transplantation.

I also joined the American Association of Kidney Patients, attending their conventions and devouring their reading material. Meanwhile, I received periodic calls from the pre-transplant coordinators at Stanford, checking on my status.

During the waiting period, I continued to work as a Real Estate Broker, although fatigue was a factor and I had to pace myself. I also was conscious of staying in good physical shape, with workouts on a trainer and neighborhood walks, but fatigue and lowered resistance to infections continued to plague my everyday activities.

The “Call”

Finally, on February 27, 2008, (our 41st wedding anniversary), the “call” came from Dr. Marc Melcher, the transplant surgeon, in the middle of the night. It was almost three years to the day that Dr. Tan and the transplant department had estimated the wait time would be for the ECD kidney!

Dr. Melcher was very honest, describing the pros and cons of the deceased donor ECD kidney “offer,” and after careful thought and consultation with my Nephrologist, Dr. Gottheiner, I accepted the offer. 

The surgery went smoothly, and after several days in the ICU, I was on the way to recovery. I did have a mild setback with pains in my arm and chest after eating, so they jumped in and quickly monitored my heart for a day or two, but there was nothing remarkable. 

I also experienced a fainting episode in my room, which they quickly treated with a transfusion, as I was anemic even prior to my surgery. The staff was very quick and cautious about my recovery, monitoring me very closely. 

I went home after 10 days at Stanford, and to this day, I continue to get better and stronger with each passing month. The high point of my hospitalization was the visit by the dietician who told me I could now eat what I wanted – except grapefruit – and to keep a heart healthy diet. Chocolate, bean soup, ice cream and nuts were now OK. Oh Happy Day!

Other more subtle changes have occurred over the two years since my transplant. I have more energy, I don’t catch as many colds or infections – and they’re less severe and shorter in duration. 

I’m back to horseback riding lessons. We have a new dog, which I am training, hopefully to be a therapy dog. And I hope to return to skiing again. 

The transplant department still carefully monitors my condition. They watch my labs to ensure that I’m not getting too much or too little Prograf and CellCept. And the wonderful physicians and staff of the Stanford Kidney Transplant Program are always there to contact if I have a question or concern. They feel like family to me now. I know their names and they know mine.

It has been a very satisfying experience. Having the personal attention and care has been more than I expected at the beginning. And in my opinion, every transplant patient should be aware that these personal connections are very necessary to a happy, smooth transplant experience.

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