Saturday, July 28, 2012

Lucy the kidney, 10 years later.


Some people know about the story of Chris and I and the kidney named Lucy, but for the rest of you who don't know, here it is.

This story starts off innocent enough.  Boy meets girl, boy falls in love with girl, but instead of he classic storyline of "boy loses girl", instead it can be replaced with "girl gives boy kidney and they live happily every after".  


When Chris and I met it was love at first sight.  I had just graduated from an intensive Musical Theatre program in Toronto and Chris was in the middle of film school.  I was 19 and Chris was 20 and we met in November 2001 on the set of a student film.  Everyone on set could feel the sparks, and I found myself wishing the shoot would last longer than three days.  Luckily we were able to be mature enough to exchange phone numbers and on January 3, 2002 we had our first date.  We went to see the movie Gosford Park and afterwards shared vegetarian chilli at a cafe downtown.  It was one of those dates you see in the movies where the couple is so in tune with each other that you know they are just meant to be together forever.  If it was a movie I am sure the audience would have been rooting for us.

It was around this time that I found out Chris had kidney failure.  He didn't seem sick though and never, ever complained about it, so we continued our whirlwind romance, not knowing the very near future held a very grown up decision for the two of us.

In March we headed down to New York City to visit my brother with a couple friends.  Chris seemed fine on the trip until the end when he started to feel sick and started throwing up.  His energy levels were still okay, and even after throwing up all night he came out sight seeing with us every day.  It wasn't until we got back to Toronto that we realized his kidneys had taken a turn for the worse.  Up until this point medically, Chris was only taking pills to try and control or hopefully reverse the kidney failure, but we knew if his kidneys were getting worse it was time for the medical procedures to progress.

The condition Chris has is called Interstitial Nephritis. He was diagnosed a couple years before I met him.  Up until his diagnosis he was always healthy.  No one in his family has this disease and they don't think it's hereditary.  He came home from a trip to California with his cousin Jake and his ankle was swollen.  The swelling didn't go away and one night it got so bad and swollen he went to the emergency room.  After a series of tests, and many hospital visits they realized he had gout, and shortly thereafter found out his kidneys were failing.  Chris was sent to Toronto to meet with a nephrologist (kidney doctor) and given the news that he would need a kidney transplant, and possibly soon.

No one knows how Chris got this disease.  If you Google it you will find that it can be caused by medications or infections.  I know Chris' mom Carol beats herself up about a possible illness that went untreated, or an allergic reaction to something that she might not have been aware of, but the truth is no one caused this and it never could have been caught or treated.  This was a weird fluke that an otherwise incredibly healthy kid was tossed a crap hand and now had to deal with a very grown up reality.

So when Chris and I got back from NYC he immediately went to see his doctor and was told he would have to start dialysis treatments.  Chris was set up with a procedure to create a fistula in his arm for the dialysis needles.  A fistula is created when an artery and a vein are connected for the purpose of dialysis.  In dialysis they take a certain amount of blood out of your body to clean it and then replace it back into the body.  This procedure must be done three days a week and lasts four hours each time. Not a lot of wiggle time left for a social life. We spent every dialysis session together, Chris reciting movies in his head, listening to music or reading and I made sure we had sushi or Subway sandwiches with extra southwest sauce to keep us well nourished.

Around this time Chris' doctors told him he had to begin the task of trying to find a living donor for his kidney transplant. In Canada the average person can wait up to eight years for an organ, and sadly many of these people die waiting.  We have one of the lowest rates of organ donation here in Canada.  Some of it has to do with the fact that we also have a low rate of automobile accidents and gunshot deaths, because a person dying from cancer or other diseases would not be a candidate for organ donation since their organs would be too damaged to transplant.  

The great thing about kidney transplants is you can use a live donor.  We were all born with two kidneys and the body actually only needs one to survive.  Poor Chris had the task of asking family and friends to think about being tested to see if they were a match.  It's already a touchy subject, but as a 20 year old kid it was a hard thing for Chris to do.  Chris is the type of guy who would not ask for anything and keep his condition to himself, so this part of the living donor route brought him completely out of his comfort zone.  People were tested and they all came back negative.

Then comes me.  Call it blind optimism, but I just knew I would be a match. I was tested early and I remember sitting Chris down and telling him that if I was a match he had to realize that he just had to take the kidney and thank me, and not to worry about the fact that his brand new girlfriend was giving him an organ.  Chris' sister Jen had also just turned 18 and was now old enough to donate and was tested too.  A few days after the test Chris got a call that both Jen and I were a match, with my kidney being an even better match than his own sister. See? We were a love match, right down to our kidneys. We named my right kidney Ricky and my left kidney Lucy. Sometimes you have to find the humour in the small things.

After a series of tests to make sure my body was fit for surgery and my kidney was healthy and easily transplantable, it was determined I would be a perfect match for Chris.  Lucy the kidney was going to be given to Chris for safekeeping.  My parents must have trusted my gut and already loved Chris since they never for a second objected the decision of their 19 year old daughter to give her boyfriend of 4 months a kidney.  My mom was even tested to see if she could be a donor.  Everyone wanted to see Chris get better.

Remember during this time we were also going through the beginning stages of our relationship, trying to fit in movie and dinner dates around our dialysis sessions and hospital tests.  Chris was hospitalized a few times for scary reactions to the treatment, including one time when he got so sick ,so fast he was going in and out of consciousness and I had to act on his behalf for all the emergency treatments that needed to be done.  Our relationship grew strong quickly.

On August 20, 2002 Lucy the kidney was taken out of me and transplanted into Chris at Toronto General Hospital.  I was in hospital for a week and Chris was in hospital for almost three weeks because he had suffered initial rejection that was quickly fixed by the staff at Toronto General combined with the staff at St. Michael's hospital.  Lucy is thriving and Ricky is working hard to keep my body functioning too.

Five years after the transplant Chris and I were married and chose to donate money to Trillium Gift of Life foundation instead of giving a little gift for people to take home.  It was such a wonderful feeling to see all our friends and family wearing their green ribbons on our special day in support of organ donation. 

So why share this story now? Helene Campbell was given national and international notice for her search for a double lung transplant this year.  I want to keep organ donation in people's minds.  Like Chris, you never know when you might quickly become sick and need an organ to live.  If we talk about donation with our friends and family it keeps the discussion open and it lets everyone know our wishes.  You can sign your donor card,  but if your family is in grief and can't bare the thought of your organs being given away, your wishes are overruled.  A simple chat letting everyone know that you support organ donation is all it takes to help out people like Chris or the thousands of others hooked up to dialysis machines who aren't lucky enough to have someone willing to be a live donor.

I also write this because this year marks the ten year anniversary of Chris' transplant and it is also our first celebration with a new little someone growing inside of me.  Yes, you can donate a kidney and still enjoy a healthy pregnancy.  The proof is my little boy kicking me in the ribs are I write this.  I think about his future and hope that if he ever needs an organ there will be people willing to donate one to him too.

Questions about organ donation? Trillium Gift of Life has all sorts of information, including the religious standpoints on organ donation (Spolier alert- they all support organ donation)