April is
National Donate Life Month so I thought I’d use
this week’s post to talk about organ donation.
It
wasn’t so long ago that the idea of organ donation was nothing more than a
little checked box on my driver’s license form and kidneys were beans used in
chili or, occasionally, organs stolen after a wild night in Tijuana (according
to urban legends, anyway).
Man, has that changed.
The last several years meant constant, everyday, unrelenting thought
about something the size of my fist that was wreaking havoc in my life. Anyone who knows me even a little has heard
or even seen first-hand about my family’s Adventures In Kidneyland, but for
those who don’t know or those who’d like to know more, I can tell you all about
it – from the perspective of both the needy recipient and from that of the
donor.
The fact is that 1 in 10 people have some sort of kidney
disease. Kidneys run our machines and we
don’t even realize it. Hearts and brains
get all the glory, but the kidneys are the blue-collar work force that keeps the
production line moving. If one guy
slacks off, you may not notice. Another
follows, and another and another until someone upstairs eventually sees it. Kidney disease can be a slow, barely
noticeable progression before you finally recognize that you don’t feel
good. This was the case with us.
Early in our marriage, my husband was
diagnosed with Focal Glomularsclerosis, or
FSGS. This is a largely genetic
condition and he had markers for it all of his life. The doctor told us there wasn’t much to do
for it and only time would tell how things played out. He could never have an issue, or he could
need dialysis and transplant one day. We
were obviously concerned but decided not to worry about it until it was
something to worry about. He was
otherwise healthy and active and we were just beginning our life together and
planning our future family.
Fast forward a few
years, I was 7 months pregnant with our second child and had a 3 year old at
home. My husband was feeling very run
down and tired. He had frequent leg
cramps. His blood pressure was rising. Every complaint had a seemingly legitimate
cause: his schedule as a musician is
irregular, get new shoes, lose some weight, eat better, exercise more, get a
good night’s sleep, etc. When none of
those things worked, he went back to the doctor and we got the Really Big
Answer. The FSGS that had been behaving
for so many years reared its ugly head.
He was absolutely going to have to begin dialysis and he was going to
need a kidney transplant.
Remember, a new life
was on her way to us, so we moved quickly.
We researched dialysis to learn all we could and decided that given his
lifestyle (late nights, erratic schedule, young children) Peritoneal Dialysis,
or PD, was the best treatment option since it could be done at home or on the
road rather than several hours a day, several times a week, trapped in a clinic
as with traditional hemodialysis. He had
surgery to implant a tube port into his abdomen and another to fuse veins in
his arm to create a fistula (one big supervein) should he ever need the hemo
option. While he healed, we drastically
changed his diet in attempt to hold off dialysis as long as possible.
Our second beautiful
daughter was born and our life marched on.
We began dialysis. We adapted our
home to ensure things were as sterile, organized and comfortable as possible
for the treatment that needed to be done several times a day. We found our groove, but the cloud was always
present. Notice I say “WE” did
treatment, “WE” made adaptations, etc.
That’s the fact. My husband had
kidney disease. But so did I. So did our children. My husband was on dialysis. So was I.
So were our children. That’s just
the way it is. Dialysis means not being
able to leave your house without a great deal of planning. It means literally being tethered for set
periods of time and it means there is no such thing as spontaneous play with
your kids. It means discomfort, sometimes pain, and a lot of work just to get through the day.
We knew our goal was a
new kidney. We did everything we could
to work towards that end but it’s a long, sloooooow process. There are so many rungs on the ladder to get
to that point. Some things are mandated
by insurance companies, some by your medical team, some by finances, and some
just by fate. We had a climb ahead of
us. One big step was to meet a financial
goal before we’d even be considered for transplant. I should note: this financial requirement is not the case
for everyone. Our insurance and
financial situation dictated this.
Fortunately, my husband is well regarded and our family is well loved so
our music community came together to get us where we needed to be quickly. Then we had some medical hurdles to
attack. We did that and after 3 long
years of waiting, we were approved for the transplant list.
Again, friends and
family surrounded us with love and several people made the call to potentially
donate a kidney. There is no way to
properly say “Thank you” when someone offers you a piece of their human body. Alas, there was no match. I knew that I was not a match because we had
different blood types. I was becoming
very frustrated. I don’t sit and wait
very well.
During our years of
learning about kidney donation, I was aware of the paired exchange program that
would enable a donor and recipient who didn’t match to pair with another
unmatched donor and recipient so everyone could get what they needed. We didn’t discuss this much because it wasn’t
an ideal scenario for both a mom and a dad with 2 small children to go into
major surgery at the same time and to require long recovery at the same
time. So I put the idea on the back
burner. Again, I don’t wait very
well. So in a moment of frustration
about not being able to just fix everything, I called the donor coordinator and
said I was in. I did the preliminary
blood and urine tests and that was that.
Around New Year’s Eve
2011, I declared that we WERE going to get a fresh start and 2012 would be The
Year Of The Kidney!!! (Dammit!) The first week of January, my phone rang and
I was told to come in for further testing because there was a possible match in
the works. I spent a day being poked,
prodded, scanned (happily, I should add) and evaluated by a psychiatrist to
ensure that I am relatively sane, knew what I was doing, was not being coerced,
and didn’t have a superman complex. Then
I was told that we were to be part of a six person exchange and that it was all
going to happen there in our hospital and it was going to happen fast!
I can’t even express
the sheer joy and relief that filled my heart at the same time that a whirlwind
of activity hit our home. A phone and
email frenzy contacted family, reassured concerned loved ones, and arranged the
help we would need to manage the children and driving and heavy lifting we would
both need assistance with post-transplant.
Sadly, one pair in our
group was forced to drop out because of an unforeseen health setback, but we
were still set to go! On February 3rd,
2012 my husband went in to surgery early in the morning and received the
healthy left kidney of an unknown altruistic donor. The only thing we knew about her was that she
was moved to donate and she was a match for my husband. Several hours later, my husband was waking up
in his room looking better than he had in years. That new kidney began working immediately and
the change was remarkable. Kidney
disease is a slow progression. I
couldn’t have told you that his color was off or his eyes were not clear
before, but immediately after receiving this amazing gift, his skin was rosy,
his eyes were as bright and clear as a newborn baby. He said his limbs felt light and he felt GOOD
right from the start.
We were able to
meet our donor as soon as she felt well enough to get out of bed. She is an angel. I’m not saying this because she gave her
kidney to a stranger. I’m saying it
because we’ve gotten to know her and would be pleased to call her Friend under
any circumstances. Under these
circumstances, we also call her Family and she will always be a part of our
hearts and our life. Because of my
husband’s career and friends, we got news coverage and were treated like rock
stars. The fact is, our DONOR was the
rock star.
Two weeks later, it was
my turn to pay it forward. I knew that
when I woke up, I would not feel as good as my husband did. I knew it was going to be rough. Donors have the worst end of the stick in
terms of recovery, but I had no trepidation.
In just 2 weeks time, I saw the incredible change in our life because of
one person being willing to step forward and I wanted nothing more than to
share that feeling with someone else. I
knew nothing about my recipient but I knew this was right and I knew that I was
loved and protected.
The night before my
surgery, my mother and I lay in the hospital hotel room and were surrounded by
the love of the angels and spirits of those who were holding me in the light
for this task. I recognized some of the
faces as loved ones on the other side, but there were strangers there as
well. After I met my recipient, a lovely
lady with young grandchildren who were no doubt happy to have their grandmother
back, I recognized some of those spirits as belonging to her and her
family. My father stood next to me while
I was being put under anesthesia and he was there tugging my toe (that’s what
he does) when I woke up.
I’m not going to
pretend it was easy. It hurt like hell
and I recovered slowly. It was weeks
before I could sneeze without fear (no easy feat in a Georgia
springtime). It took some time for my
body to adapt to the changes, but it eventually did. I have a well earned scar and won't be wearing a bikini (not that I was likely to anyway), but I am well. My husband is well. My family is WELL!!!
You read stories about
life saving transplants every day. Your
hear about the doctors and medical advances.
You hear about the recipients and how they’re doing. You think “That’s great!” and go on about
your day because if you’re like me, you think the donor was someone who checked
that box on their license and tragically died to enable that recipient to
live. Many people don’t even realize
that living donation is possible. It’s
not only possible, but it gets easier and better every single day. And while I didn’t go into this with the idea
that I needed to save the world, it definitely gave new meaning to my life and
I’d do it all over again.
If you’ve ever
considered making a difference in someone’s life, maybe you’ll consider our
story. There was nothing selfless about
my act. I bartered my kidney in exchange
for a kidney. I wanted my husband
back. I wanted my children to have a
healthy father for the first time in their lives. I was very specific about what I was willing
to do to get what *I* wanted and I got it.
Our donor was truly
selfless and Altruistic in her gift. She
had no agenda other than to help *someone* to have a better life. In exchange, I hope she gets all of the love
and good rewards that such a fine person deserves. I’ll do my part in the love department.
I’ve been a recipient
and I’ve been a donor. I will continue
to be an advocate for organ donation for the rest of my life, not just for the
month of April.