Monday, June 9, 2008
In 2001, in the height of my corporate career I was feeling "strange" - tired, muscle cramps and more tired. I was falling asleep at my desk at work - not good, with a general feeling of being unwell. I thought I was just burning out from all the stress and long hours. One of my colleagues literally ordered me to see a doctor (thank you B). I won't bore you with all the small details but the end result of a visit to my family doctor and subsequently to a specialist began my journey into renal failure. I knew absolutely nothing about kidney disease and was just wondering what medication I would have to take to make things better. I found out rather quickly that there wasn't a quick fix - that I had a life threatening disease and that I would need kidney replacement therapy just to stay alive. I also didn't appreciate just how dramatically this diagnosis would change my life and the many roads I would have to take to understand and cope with what was about to happen to my body, my spirit and my way of life. The therapy was dialysis.
Dialysis is used as an artificial replacement for kidney function Dialysis may be used for very sick patients who have suddenly but temporarily lost their kidney function (acute renal failure) or for quite stable patients who have permanently lost their kidney function (stage 5 chronic kidney disease). When healthy, the kidneys maintain the body's internal equilibrium of water and minerals (sodium, potassium, chloride, calcium, phosphorus, magnesium, sulfate). Dialysis treatments replace some of these functions. However, it is an imperfect treatment to replace kidney function because it does not correct the endocrine functions of the kidney.
In August, 2001 I began hemodialysis that continued for over 5 years. Some patients do well on dialysis. I was not one of them and was getting progressively worse. I could actually feel myself deteriorating every day. My life was focused around dialysis - 3 times a week, 4 hours at a stretch. My diet became a nightmare - entirely restrictive - restricted fluids, potassium, phosphorus, sodium, no legumes, no whole grains. I could only eat things that generally are considered not very good for you (e.g., white flour). I had to learn to eat all over again and to prepare foods that would keep me healthy.
I thought a lot about the many things in my life I had taken for granted; the strength each day to do the things that I loved, the luxury of an open schedule and the belief that time was on my side to ponder and plan the many options that lay ahead.
I learned that if you don't have a family member with a match for organ donation, your long term life option is a cadaveric (donation from a deceased donor) renal transplant. Unfortunately 45% of all kidney patients on the transplant list die waiting. In Canada alone, the wait for a cadaveric donor can be 10 years. This crisis is not exclusive to North America - it is a worldwide crisis.
I'm not telling you all this to create a pity party. On the contrary - I'm sharing my story because I'm blessed to be one of the very lucky people in this world. I was on two transplant lists, one in Canada and one in Florida.
Here's some key lime pie and a palm tree in honour of the state of Florida:
While talking on the phone with Psychgrad on January 4th, 2007 at 11 p.m. I heard my cell phone ring. Who could be calling on my cell at this time of night? When I answered the phone, what I heard made me entirely numb. The voice on the other end said "we have a kidney for you... do you want it?" In the midst of chaos, excitement, and fear, Psychgrad pulled together flights and arrangements and by 8:00 a.m. the following morning we were on a flight to Ft. Myers, Florida. On January 6th, 2007, I was the recipient of a successful kidney transplant. A second chance at life. After a 3 hour surgery, I awoke in the recovery room feeling 100% better than I had in years - the kidney was functioning normally, the operation a total success. I was/am blessed. Both Psychgrad and Actor Boy were with me to share this miracle of life.
Here are pictures of some of the information kidney recipients are given prior to a transplant. The first is the list of medication you take post-transplant:
The second is self-explanatory:
After 8 days in the hospital, I was released. Psychgrad and Actor Boy had, in the meantime secured a pretty decent place for us to stay. I wouldn't be able to fly for 3 months so Florida became home.
With this wonderful gift also came options once again. My diet is no longer restricted - although I work hard at respecting my new kidney and maintain a healthy diet low in sodium and low in fats. By the way, it's customary to name your new organ (kind of an inside transplant joke). My new organ is named Sidney the Kidney.
As a sidebar, although I was so blessed, I also think about the 20 yr old girl whose life was taken in a car accident and the decision that she and her parents made to donate her organs to save others. As a mother, I can't even imagine what these wonderful people went and go through. But, their decision changed my life.
This link will take you to links to transplant associations around the world.