Hitting the Genetic Jackpot: Giving My Son a Kidney

When my son Casey was three years old he was diagnosed with retinal degeneration.  To our shock, the doctor told us he was legally blind and could very well become totally blind by the time he was 20 or 30 years old.  Years passed and we felt pretty lucky because his vision did not get any worse. Life was not easy, but he learned to compensate a lot for his blindness.

As he reached adolescence, though, he began to get very tired quite often.  We chalked it up to his blindness and being a teen.  When he was fifteen, with a keen passion for flying and aviation, he became interested in joining the local Civil Air Patrol chapter.  Filling out the application, he was asked what his blood type was. We didn’t know.  Looking through old reports from when his visual impairment was diagnosed, I did not find his blood type, but did find a report from a geneticist who said that sometimes these kinds of retinal disorders like Casey’s can be part of a syndrome, including one involving kidney disease.

Our dog, Gershwin, at the time was exhibiting symptoms of a yet-to-be-determined problem and among his symptoms was a gargantuan thirst called Polydipsia.  In that geneticist’s report, one of the symptoms of that kidney disease was Polydipsia.  Casey always drank a LOT of water, so we decided to ask his doctor about this.  Well, thanks to the Civil Air Patrol, Gershwin, and this old report, we discovered quite serendipitously that Casey did have kidney disease (nephronophthisis) – a contributing factor to that fatigue – and would eventually need a kidney transplant.

Nephronophthisis is a slow-progressing disease, so it was five years before Casey got to the point of qualifying for a kidney transplant.  His doctor in Syracuse said optimistically “You hit the genetic jackpot, Casey.  With both blindness and kidney disease, you are covered by Medicare and Medicaid!”  Great sense of humor, that guy.

At age 22, Casey finally decided it was time to schedule the transplant.  After screening several family members as donors, I was fully tested.  I was elated to know that I was a match; it seemed totally appropriate for me to be able to give him another chance at life. I was never ambivalent about it, and though I was 59 years old, I was in really good shape. I figured my kidney would be strong and healthy, and I would bounce back easily from the surgery.

We had the transplant done at the Columbia-Presbyterian hospital in New York, since my son was living in Brooklyn and we had heard so many great things about their transplant program.  I live upstate, so it was a challenge to figure out the logistics of the pre-op testing, staying in New York for the post-op time, and making sure Casey had good post-op care, since I would not be able to be there for him.  Thanks to very generous family and friends, we were able to find places to stay and be cared for.

The surgery happened on November 3, 2009.  Casey woke up in recovery feeling great; he was cheerful, alert, happy, articulate, and clear as a bell – fantastic! Everything went so smoothly for him that instead of staying five days in the hospital; he was discharged after three days!  Two months later, he continues to heal well and shows no sign of rejecting my kidney – yey!

As a very healthy donor, I expected to be functioning really well after surgery.  What I did not know was that I was – as the doctors said – “off the charts” in sensitivity to the anesthesia and all of the pain meds and that would make it harder for me to rebound.  I woke up in recovery, overwhelmed with a nausea that rarely left me.  The only good thing about waking up for me was despite my haze of nausea, I could hear Casey talking animatedly down the hall – it was like a good dream in the middle of a nightmare!

I was discharged the same day as Casey and I hoped that just by being out of the hospital I would start to feel better.  But the oral narcotics that I was given to take made me even sicker and I ended up throwing up the whole day after I left the hospital.  This was not fun after all that abdominal surgery!  The next 3 weeks were very hard for me.  I had little appetite, slept very poorly and was extremely constipated.  I almost wish with hindsight that I had not taken ANY pain meds; I probably would have preferred pain to the horrible nausea and other side-effects of the pain meds.

I stayed in a friend’s apartment in NYC for about 2 1/2 weeks, and then finally came home; coming home was the best medicine!  I was still very weak so luckily I was able to stay a few days in the care of my sister who lives in the same town.  I still had a bit of nausea, even though had long since stopped the narcotic pain meds.  When I stopped the ibuprofen I finally started getting a little appetite back (Tylenol never seemed to help the pain at all for me).  Funny thing is I can barely remember the pain during this whole experience; I only remember the nausea.

At week four in my recovery, something shifted – I felt like I got my old life force back again.  I still had someone walking my dog for me, but I started eating more, sleeping a little better and just feeling more like me.  Those first four weeks post-op were extremely emotional for me, and I felt badly that I could not celebrate my son’s excellent experience as I would have wanted to.  But just a few weeks later, I really rebounded, rediscovered my energy and had a great Christmas with my sons visiting.

Now a little over 2 months after the transplant, I am back to work full time, walking my dog every day, getting back into weight training, skiing and hiking.  I tend to get sleepy around 9pm every night and my abdomen is still a bit tender to the touch, but I am really, really fine.  I would do it all over again.

A couple of very useful things:  1) Drawstring pants with absolutely NO elastic in the waistband – a MUST for several weeks.  2) To keep your friends and family informed of what is going on and to receive messages from them (without needing to answer the phone or emails), please check out www.caringbridge.org – it’s a godsend.