A Living Kidney Donor's Story

I am a living kidney donor that desires to share my story to encourage and inspire other living kidney donors and prospective donors.  I donated a kidney to my sister Carol on October 12, 1976.  Over the next 11 plus years, before my sister passed away on March 14, 1988 Carol wrote several poems to me.  I will share some of these poems on this site as well as some of my life experiences as a living kidney donor. 

 

This begins in honor of our 40th anniversary of the transplant which took place at the University of California at San Francisco Medical Center (UCSFMC) on Parnassus Avenue.  The campus is located on Mount Sutro just to the north of the tower.  From our floor visitor's area, you could see the SF bay, the Golden Gate bridge to the north, and look down into Golden Gate Park.  Then directly below you could see into Kezar Stadium, where the SF 49'ers played NFL football, before moving to Candlestick Park.

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My sister Carol was the 2nd of 5 children born to our parents.  I was the 3rd.  We were nearly 32 months apart, something that turned out to be an important factor when it came time to find a kidney donor in the family.  Dad was a European (Albania) immigrant who came to the US in 1937 at the age of 16.  He met our mother thru his cousin, who was a high school friend of hers in Cleveland, OH.  Dad had enlisted in the Army and served time as a Military Police Officer guarding the Panama Canal.  They became pen pals first and eventually met.  They fell in love and were then married in 1946, after he had completed his time in the service.

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By the time Carol was diagnosed with diabetes in 1958, she was 8 years old, and there were 7 of us in the household.  I recall Carol struggling with the daily insulin shots, test strips, special diets, hunger fits, and yet somehow be able to maintain a very upbeat personality and a free spirit.  She definitely did not like standing out in a crowd for special needs.  In the early 60's there was summer camp east of Cleveland where she attended with other diabetic children in northeastern Ohio.  Carol was a good student and worked part time in her teenage years.  The adjustment to learning to live with and manage her illness, had been conquered.

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After graduating from high school in 1968, Carol worked a couple short term jobs before ending up at the Cleveland Plain Dealer for a few years.  In the summer of 1971, Carol went on vacation to Los Angeles, CA.  When she returned, she packed up all her belongings and moved to Long Beach, CA.  It was a shocking turn of events, as Carol had always lived at home with our parents.  Our bedrooms were right across the hall, and we often had late night conversations, as we shared our growing up experiences.  We were a middle class family living on the west side of Cleveland, OH.  Dad worked at Alcoa Aluminum, in the forge, and Mom was a stay at home housewife raising five children and caring for the family.

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One sign of diabetes that soon required attention was Carol's failing eyesight.  She was a voluteer to UCLA for laser eye surgery in it's early stages and it was a success.  After a short time in Long Beach, Carol moved to San Francisco with her now live-in boyfriend.  They spent a few years living in a hippie commune in the Haight/Ashbury neighborhood.  This was only a few years after the big movement in the late 60's that made this area infamous.  The couple settled into an apartment on 14th Ave just outside Golden Gate park.  This is where they lived when the transplant was performed.

 

By now, I was working at the Cleveland Electric Illuminating company as a Junior Engineering Aide and getting engaged at Christmas of 1975.  The wedding was set for Labor Day weekend 1976.  In March of 1976 my mother received a letter from my sister Carol.  No cell phones back then, and long distance calls were expensive.  Carol wrote of her failing kidneys and how she was going to start dialysis soon.  She asked that all her siblings be tested to see if any of us were a positive match for a kidney donor. 

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So all four of us, my two sisters and brother, were all tested that spring.  Now I have to admit that I did not jump to the front of the line hoping I would be the best match, with an upcoming marriage and no understanding of what this could all mean to any of us.  But, when the initial tests came back and I was the closest match, there was no question in my mind whether I would take the next steps toward becoming a donor.  There were a series of blood draws done over the next few months.  I would go to Lutheran Hospital in Cleveland and they would send results of my blood tests out to UCSFMC.  The final pre-test took place in San Francisco in August of 1976.

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What an experience.  My first airplane flight.  Traveling all alone to see my sister that I had not seen in 5 years.  All of 23 years old, still living at home with my parents, and never having been west of Chicago.  I was at UCSFMC for two days of tests.  The most intense was an IVP dye injection and a monitor showing the flow of the dye through my organs.  I was allergic to the dye and they had to inject Benedryl to stop the symptoms.  Next  rough test was a tissue sample extracted from my inner thigh.  That hurt for several days.  All tests were positive and the transplant date was set for October 12, 1976.  I was an ideal donor candidate.

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A couple of key events happened after the testing that were very special to me.  First I attended a major league baseball game in Candlestick Park with Carol and Jerry to see the SF Giants play.  A few years back I had become hooked on the idea of seeing an MLB game in every stadium in the country.  I had already seen games in Cleveland, Pittsburgh, Cincinatti, Chicago, Milwaukee and Detroit by this time, and was getting one way out on the west coast.  Second, and even more important, I attended a kidney dialysis session with my sister.  For 8 hours she laid in bed talking to me or dozing off while her blood ran out of her into the machine and then back into her body.  She was on an every 3rd day dialysis schedule and it was tough!

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Carol told me that day that she would rather die than be on the dialysis machine for any length of time.  From that day on there was never a doubt in my mind as to if this is the right decision to make.  No matter how many years this might work for, I wanted to be able to get her off dialysis.  Seeing her like this was crushing.  The life expectancy for a kidney recipient is about 10-15 years after transplant.  No such limitation for the donor.

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Suddenly it was October and I was heading out to San Francisco with my parents and my new wife.  My sister Carol had been able to travel to Cleveland for the wedding just five weeks earlier.  Now we were having dinner at the Franciscan Restaurant on Fisherman's Wharf and about to check in to UCSFMC.  The transplant took place on a Tuesday morning very early.  My sister and I were in beds side by side in the operating room.  Before going under the anethesia, she reached out and took my hand.  Carol thanked me for taking the chance to help her and said she wanted me to know how much she loved me, just in case we never see each other again.

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Next thing I know I'm waking up and walking around.  I was in the hospital until the following Tuesday and my sister was right down the hall.  There were some minor rejection episodes but things stabilized.  Carol was still in the medical center when I left for home on the 31st of October.  My therapy had been to walk the couple miles up to visit my sister each day, and ride the trolley's all over the city.  Fisherman's Wharf remains my favorite place in the city, however, The Cliffs at the far western edge of Golden Gate Park, is a close second.

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Soon Carol was out of the hospital and in 1977, she and Jerry moved to Oakville, WA to live on a farm.  Each month for the first year, Carol wrote a poem to me.  Then, for the next five years, she wrote a poem on the anniversary of our transplant.  Some of those poems are included on another page of this web site.  Carol lived with Jerry on the farm for a few years and then decided to move out on her own.

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I was living in Lakewood, OH and we talked on the phone often.  Resuming my hobby of playing basketball and softball in 1977, I also took on the role of player coach for the basketball team.  I then moved on to a mainframe programming job in 1979 and continued to play city league sports.  There were no negative impacts to my life as a kidney donor.  I was able to do anything I could do before the operation, except very heavy lifting. 

 

Carol was able to make several visits to Ohio during the same period, although I never made it out to Washington state to visit her there.  Some time after moving to Lacey, WA Carol met Richard McDonald.  They fell in love and were married in Seattle, WA in November of 1981.  By now the transplant was five years in the past and we were both doing well.  There had been a few rejection episodes but all had been resolved.

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My first daughter Erin was born in March of 1983.  After getting divorced from Erin's mother in January of 1986, I planned a trip to visit Carol.  She was now living back in Walnut Creek, CA.  It's just over the bay bridge and a few towns beyond Oakland.  She and Richard had a nice apartment and he worked in photography.  For the first week of the trip I spent time in Ennis, Montana with a high school friend, Gad Szucs.  Then I flew out to spend a week with Carol and Richard.  On that trip, Carol and I went into UCSFMC for a day to have a 10 year check up.

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Results were positive and we celebrated with a dinner at The Franciscan at Fisherman's Wharf.  The next day we all attended a major league baseball game at the Oakland Coliseum where the Athletics play.  Carol and I spent a few days riding the cable cars and the Bay Area Rapid Transit (BART).  We did not know that the next time we would see each other would be our father's funeral in April of 1987.

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It was almost a year later when we got the word from Carol's husband Richard that she had passed away on March 14, 1988 of "congestive heart failure".  The kidney was still functioning and had given her 11.5 years of service.  The five remaining family members flew out to California for the funeral services.  Afterwards, her ashes were taken up in a helicopter and scattered over the San Francisco Bay.  Still reeling from the shock of losing two family members in just under a year, we headed back east to get home and regroup.

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When Carol died, I was working on a project for BancSystems Association in Dallas, TX.  I completed that job and drove back to Westlake, OH to resume my role as a Project Manager.  On my first day back August 1, 1988  I met Kathy at work, and within a few months we were dating.  At Christmas 1990 we got engaged.  In July 1991 we were married and melded her two sons and my daughter in our new family.  Three years later our "Brady Bunch" family officially became yours, mine and ours, when our daughter Michelle was born in June 1994.

 

Kathy and I have now been married over 25 years and the children are grown.  We have three grandchildren and a fourth on the way (due Nov 2016).  Last year in December I retired after 36 years with BancSystems, EDS and HP.  Most of the time I was an IT Project Manager.  I was fortunate to travel to many US cities and three other continents for work.  I played softball into my 40's and coached girls basketball in my 50's.

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I have been blessed with two amazing daughters, two hard-working and great friend step-sons, and a fabulous wife.  I returned to San Francisco two more times after Carol's funeral.  In 2007 I worked on a project for three weeks and stayed downtown.  Then in 2012 I was out there for a work conference.  Both times I visited the UCSFMC campus and checked in with the kidney transplant unit.  I also rode the cable cars from downtown over the hill to Fisherman's Wharf and had dinner at the Franciscan.  Each time I was alone looking out at Alcatraz and wondering if any of Carol's ashes had landed out there.

 

I am still chasing the major league baseball stadium dream and only have a handful left to go.  Next year I hope to see a game in Seattle, WA where our youngest daughter will soon be living.  Most recent new stadium was in Washington, DC with my youngest daughter and my wife in July 2016.  That leaves me with only six current major league baseball teams where I have not seen a game as of 10/12/2016.  They are Colorado Rockies, Minnesota Twins, Tampa Bay Rays, Miami Marlins, Arizona Diamondbacks and Seattle Mariners.  I also have eight cities where I have seen games in two stadiums and nine cities where I haven't seen their newest. 

 

I am able to spend more time with the grandchildren and get a few more road trips in.  A few years back Kathy and I spent a week in the Outer Banks and have already gone back two more times.  Next year it will be the Pacific Coast to visit our daughter.  Projects around the house either hands on or managing abound.

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My original family is down to four now as my youngest sister died from complications after cancer treatment in August of 2012.  Since retiring, I have been more able to assist my brother Ted (62) and sister Gloria (69) in caring for our mother (89) who still lives close to all of us.

 

Today I still have a 12 inch scar on my right side where the kidney was removed.  Nowadays, the incision is very small and is done with laser and modern technology in a much less invasive procedure.  As part of my retirement activity, I joined the "International Living Donors Online" group and intend to remain active in promoting living donors and encouraging others to "take the chance" to extend someone's life.

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