I know the longer I put this off, the harder it is just going to be so I’m going to have to just jump right in and go fer it…
I need a clever title for this chapter but here is a brief history of the past two plus years of my life. Maybe I’ll go back a little further for clarification.
I was born in Calgary, Alberta on June 1st, 1981. I was the second of my parent’s four children and I have been told that I am the only child to have been planned and arguably the biggest genetic failure, haha. Thank you, surprise double-recessive disease that went undiagnosed until a month before my 14th birthday. Anyway, I grew up relatively normal but I was always keenly aware that there was something amiss about my health; I coughed, there was goo, I was always being taken to doctors. Finally my mom found the right specialist who administered a simple and painless test that gave us the answer. Cystic Fibrosis. I was devastated because I had always secretly hoped that there would be a simple fix to what ailed me and I would be a normal girl like everyone else. Instead, I found out at 13 that I had a life-expectancy of 32 and my future felt a little grim.
The good news was that my particular mutation of the disease didn’t involve the horrid pancreatic symptoms that cause so much grief to my fellow CFers. I avoided a life of enzymes but still had to deal with my fair share of infectious goo and coughing that made quiet classrooms and sleepovers with friends really uncomfortable. I still tried to keep up with the kids and play sports, I really only quit playing Varsity basketball because I was terrible at it but my real talents in life were really writing and being adorably sarcastic and bitchy so I focused on honing those skills instead.
I never wanted to let CF hold me back from doing everything I wanted to do so, despite my parent’s best efforts to keep me closer to home, I moved across the country to go to University. It wasn’t long after graduation, maybe a year, that my doctor sat me down and told me that, numerically, my lung function was not good and that I was at an advanced/severe stage of my disease and it was time to start having the talk about future lung transplantation.
I had a bit of a nervous breakdown after that. I had just finished school and was on the precipice of starting my life and he wanted to have a discussion about the end. In my mind, because I was diagnosed so late and because I wasn’t sick very often and because my pancreas worked that I was one of the special ones that would beat the odds and not have to face this reality until well into my 30s or 40s. It wasn’t so much delusion or an inflated sense of importance, more so a basic need for self-preservation, a coping method that allowed me to live my life without being limited by my disease.
So instead of having that transplant meeting I moved to Hawaii for six months. I think my parents knew that I had some living I needed to get out of my system and were delightfully accommodating in letting me waste my talents by living at their house, working menial jobs between jaunts to Hawaii, the Bahamas, Africa and Paris. I’m so grateful for that because I couldn’t imagine wasting those years in some cubicle under fluorescent lights, hoping the guy next to me doesn’t get too grossed out by my coughing over his morning doughnut and double-double.
Here is where the real adventure began. I had been living in Hawaii with Ian for a month and a half just before Christmas of 2008. I wasn’t feeling well and was losing weight. We flew home and I immediately went to my doctor and was admitted to the hospital over the holidays. They let me out for Christmas but I had to go back shortly after. On New Years day, my doctor asked me if I would allow his protégé to do my discharge from the hospital so that he could get some practice in and the little fella came in and threw the book at me. Telling me that it was time I moved forward with transplant and that I needed oxygen at all times and I needed a feeding tube, which was a lot of information to handle in one go. I don’t really want to relive that day because it was arguably one of the worst in my life. I’m so grateful that my motherly physiotherapist Julie was there to help calm me and clear the room when I started to hyperventilate. I left the hospital that night to find a large oxygen machine in my house. Ian and I ate Chinese food with my parents and I cried myself to sleep.
Two days later I had to pull myself together to face my extended family at my cousin’s wedding. I have the most delightfully loving and supportive extended family and friends who helped me to pull through the next two plus years as my oxygen needs grew and my willingness to face the outside world disappeared. I was never in denial about the situation but I never fully took to my new situation. I couldn’t bear the thought of wearing oxygen in public and having my disability being so glaringly obvious to the outside world. I need to be sick in private and being a 20-something girl with a plastic tube across her face and a tank strapped to her shoulder, doesn’t do much to enhance one’s self-esteem. If I went out, it was for short trips only and the oxygen was in the car. I think it was because I grew up a shy kid. It took me a really long time to be able to walk proudly and stare people down who were giving me funny eyes. Wearing the oxygen in public robbed me of my ability to walk proudly, I turned in to that insecure child all over again (if you want to get all psychological about things.)
A brief timeline of my transplant journey…
December 2008 – Bad news day on New Year’s Eve
March 2009 – Initial meeting with my CF clinic – Dr. Rabin and social worker Aimee to discuss what was to come.
September 2009 – First meeting with Edmonton where I met the delightful Dr. Kapasi for the first time. It was basically a question and answer session where I committed to a week of extensive testing.
December 2009 – Testing/torture week in Edmonton where I was bled, scanned, x-rayed, cathed, bronched – you name it. Generally unpleasant but I learned a lot and met with many of the Edmonton team.
March – May 2010 – Six week physio program where I got in shape and met some interesting fellow transplanters. Generally, patients are actively listed at this point but I put it off so that I could get my wisdom teeth out and finish some vaccinations. It is highly possible that I was just dragging my feet because I wasn’t really ready yet.
August 9th 2010 – Officially listed as actively seeking body parts. On this day, Sandra and Deanna and I met for the first time as a threesome (we had been emailing for months, but I’ll talk more about that later).
January 7th 2011 – I got my FIRST CALL for lungs, which ended in a dry run. Don’t worry, we will be talking about that later….
February 6th 2011- I got my SECOND CALL for lungs. Dry run… Apparently two dry runs are pretty rare. Lucky me.
March 11th – I kept hearing ‘third time’s a charm…’ Guess they were right because this call was a go.
And now we are all caught up….
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