I've been procrastinating about writing this blog post because I cannot wrap my head around what a crazy year it has been, wrapping it all up in a pretty little post just seems like such a daunting task, but I'll try anyway!
January 2011 started out much different. Friends and I gathered in Nathan Philips Square on a relatively mild winter night and counted down the final moments of 2010. I remember being determined to walk all over the city, I remember not being able to carry my bag up the TTC stairs because I started seeing white spots, but--mostly-- I remember having fun despite the burdens my body was trying to impose.
Later that month, to celebrate the completion of school (for both my sister and I) we took a family trip to Barbados, I fell ill for nearly the entire trip, but was still able to snorkle with the sea turtles, take a submarine ride, and enjoy long days at the beach. The adrenaline must have kept me going through that trip (and determination to enjoy myself) because on the plane ride back I was struggling to breath (even on 3 L of oxygen) and by the time we landed I could barely walk off the plane. I was started on oral antibiotics when I returned and was able to celebrate my birthday with great friends in Collingwood. Again, determination prevailed only temporarily, and the next day I felt my oxygen levels dropping, heart pounding, and blood oozed from my diseased lungs -- I knew it was time to get more help.
January also brought me my foster dog, Penny, who I had applied for in the fall. She was timid and shy, but affectionate and wanting to please. She only walked on three legs because of a severe injury to one.
By February the fun was over. I was started on home IV and dear Penny went in for surgery to fix her broken hip joint. We both attempted to heal together. By the end of February I was admitted to St. Mikes because none of the med combos were working and my drug allergies prevented me from using those combos at home.
When I was out on a pass from the hospital on my Dad's birthday in March, I remember remarking "Wow, I was so sick before, I feel SO good now, I can't get over it." We really thought we had found the right medication combo, my lung function was back up to 28% and I was to be discharged the next day, but fate had other plans. Within 24 hours my med combo started failing, I was getting more short of breath by the day, and my lung function dropped back down. I went from briskly walking around the city a few days earlier, to being short of breath just sitting in bed. I could not walk to the bathroom without looking like I'd run a marathon, I could not reach for items on my table, I could not do much (though I'd still force walks). I was put on oxygen 24/7, but was able to taper down to use for just walking. By the end of March I asked to be re-assessed for a lung transplant, the doctor's agreed it was the right time to consider listing.
On April 19th I met with the surgeon at Toronto General Hospital and signed the dotted line. I was officially listed for transplant as a status 1. On April 20th I was released from hospital after 8 weeks.
May was such a blur, with frequent appointments at St. Michael's Hospital accompanied by attending the physio program at Toronto General three times a week.
By June I was back on oral antibiotics for a month. I started struggling with the idea of transplant and thought I was 'too healthy' for it... by the end of the month I had changed my mind.
In July we started renting a condo close to Toronto General so that I could have a bit more of a life. It was getting challenging finding time for a life between the usual 4 hr treatments PLUS three times a week physio PLUS appointments at Toronto General and St. Mikes -- this probably saved my sanity for the summer. I started night French lessons to attempt to keep my brain alive... not sure how much I absorbed, but it was fun!
August brought our yearly fashion show CF for CF. This year I just designed the program and wasn't as involved, but it was nice to sit back and just enjoy the experience. It was also a nice excuse to wear my heels again (which I've been avoiding the past year because they make me short of breath) -- thankfully there were lots of places to sit!
By the time September hit, I knew I was done for, something changed when that fall air hit my lungs. I had been stubbornly avoiding using my oxygen for walking all summer long (instead opting for shorter walks and more frequent breaks), but now I had no option, I NEEDED it to function.
Still, I kept busy. My Dad, Sister and I planned my Mom's surprise 50th Birthday -- and yes she was surprised. A few days after I started oral antibiotics again after developing a 'weird breath' and at the insistence of my physiotherapist. Two weeks later I was started on IV antibiotics.
By October things were starting to go downhill again. I was admitted to St. Mikes to try a new drug combination since my current one was not working. During this admission the "Big Boss Doc" came into my room and said it would be a good idea to increase my status on the transplant list (status 2) -- and after digesting this information (that I saw coming) I agreed. On October 24th I was listed at status 2 the "urgent" list.
After over 5 weeks on IV antibiotics, and little improvement, I stopped IVs in November to give my body (and self) a 'break'. I slept A LOT. And tests showed my white blood cell count was climbing (though I felt ok) and my pfts dropped ever-so-slighty. The waiting game to restart IVs was on.
The night of November 22nd, I went to bed early. I had agreed to do a speech at U of T early the next morning about life on the transplant list -- as I closed my computer that night, after reviewing my talking points, I thought 'wouldn't it be funny if I got my call tonight?'
At 1:13 am I heard a 'beep' on my phone indicating I had a voice mail. I had no service, apparently, so my calls were going straight to voice mail. It was TGH saying they needed to get in touch with me ASAP -- I knew what that meant. I had a moment to mentally vomit nerves, then called back and heard the words "We believe we have lungs for you and you're first choice."
I thought it would be a false alarm, most people get those. But no, this was the real deal!
10 hours later I was on the OR table. I waited there for 2 hours, chatting with the OR nurses, then the surgeon (a man of few words) came in, clapped his hands together and said "OK let's go". I thought that was funny.
I took my last conscious breath with Lindsay lungs, savoured it, appreciated it, and stored it in my memory. I wanted to remember how they felt...
6.5 hours later I was breathing with new lungs. Over the next few weeks I would learn how to breath again, I'd fight infection that threatened to invade my new breathers, have my first blood transfusion, and eventually bust free from the hospital confines.
By December life slowly started to normalize -- a new normal. Suddenly my afternoons are not consumed by treatments, suddenly I no longer need 10 + hours of sleep, suddenly lung function tests are easy? I blew 57% my first lung function, by the end of December it was 62%. On December 31st I played "Just Dance" for Wii, and did not feel short of breath until the second or third song -- last January when I played that same game I had to 'chair dance'. In 2012 there will be no chair dancing.
Thank you donor for allowing me to dance again, for wrapping up this crazy year on a high-note, and for letting me realize the possibilities of 2012.
