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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.
