Adventures In Kidneyland

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 3^rd, 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.