My CF friends and me

It is now Tuesday morning and I’m in the IV room for what should be my fourth last course of Caspofungin. I should be done on Friday and, if so, Saturday will be the first day that I will not have had to be at this hospital since March 11^th. It is a big week. It is National Organ and Tissue Awareness week so I hope everyone is wearing their green ribbons and signing their organ donor cards. What makes this week truly exciting is that the last member of my CF transplant support group of three is having a live-donor transplant TODAY. As I am typing this right now, waiting for the IV drug they forgot to order (it’s been an HOUR, JEEZ), Deanna is in surgery. Her uncle and her brother have each lovingly offered up a lobe of their lung so that she has this wonderful chance at this goo-free life.

The nurses at the Edmonton clinic know about our little trio. I’ve been open with them about how we are friends and the greatest support group of all time – myself, Sandra Smith and Deanna Christopher. It really does not please them that we associate freely. In the past week, both Deanna and I have received the same lecture that we should NOT be visiting each other for the first three months and really shouldn’t see each other for at least a year after transplant. Oh, we can be friends over email and over the phone, but they deeply frown over personal contact between CF friends. I find this interesting and odd. Sure, I understand the principle – germs are bad and we are immune-suppressed, we cultivate different things in our lungs and could possibly infect each other. However, I am forced to spend at least 4 hours a day at a hospital where greasy, yellow-gowned people roll themselves around common areas with their protective masks around their necks. I go to the physio gym every day where pre- and post-transplant patients share space and exercise equipment. It’s funny to think that three people with savage mutual respect and awareness of personal space and germability, are forbidden to associate with each other at a point when we need each other the most. So we still visit, we just make sure we maintain a safe distance, don’t cough on each other, wash hands frequently and limit any open-mouth kissing. The only things we share are fries and hand-sanitizer.

I wasn’t one for having CF friends growing up. I was diagnosed later in life and never had the opportunity to forge any connections with fellow sickies. The year before I was diagnosed, they ceased the annual CF CAMPS, where I gather kids got together and did physio, ate food and made friends. Apparently they realised that having a bunch of sick kids in close quarters meant that they could easily spread germs and contaminate each other… (ok, Edmonton nurses, I get it but you’re still not gonna stop me from hanging out with D and S), so I went without having a real CF friend until I went online and joined a CF chat group in my second year of University. After I posted something pithy on a message board, I got an email response from a girl named Katie in Arkansas. We immediately had so much in common, she was younger than me by two days and I was so amazed at how similarly we saw the world and how much we had in common that we both abandoned the weirdos at the chat group and just became vigilant pen pals.

I love Katie as a sister, she has been such a huge force of support in my life. The hardest part about having to go forward with transplant was having to go on without having Katie there to relate to. It was scary for both of us but she has stuck by me and supported me as best she could. We finally met face to face after an 8-year friendship this spring when she flew to Calgary so we could celebrate our 29^th birthdays together. I took her to Banff, where of course it was snowing in June… Sigh… But it was on Banff that day that I realised that I could no longer stroll about freely without wearing oxygen. She was there the day I had to sport the plastic tube and walk down the street because I just couldn’t hide it anymore. She helped make it ok.

My Calgary CF clinic likes to play matchmaker when it comes to huge events in CF life – like getting feeding tubes or ports or transplants. I did manage to make friends with one girl in CF clinic over the years, a girl named Amanda, who was the first person I actually knew to undergo transplant. When I was in Hawaii, a few months before I started getting sick, Amanda was in Edmonton getting new lungs. I was obsessively following her progress over Facebook, not knowing that I was months away from having to face that reality myself. Through CF clinic, I met Shauna, who is a beacon of understanding and positivity. I love her no-bullshit approach when it comes to talking about transplant, she told me that being afraid of transplant was silly because I could either go on, as is, suffering for years until the end or I go through with it and you either die on the table and it’s over or you get a whole new life. I somehow felt instantly better about moving forward with transplant and she’s been a source of sage advice ever since.

One day, however, Jeanette, our delightful pharmacist asked me if I wouldn’t mind meeting a girl who was about to start her six-week physio program in Edmonton, as I had just recently finished mine and it would be good for her to have someone who had just been through it in case she had any questions. So that is how Deanna and I were introduced. She was small and had that feisty CF spirit that I so identify with. We started emailing daily and one day she sent out a larger email to me, the aforementioned Amanda and a girl named Sandra who was also awaiting transplant. Sandra emailed me back to introduce herself and before we knew it, we had a three-way Facebook message where we spoke daily about living life waiting for transplant. The instant comfort and understanding was amazing. Suddenly, I felt less alone in the world, despite the fact that I was rapidly becoming a recluse. I could talk to these girls about anything and everything and they understood things in a way that no one else in my life really could. Oh, and I also wanted to give a shout-out to Travis, because you are hilarious and awesome.

Anyway, this loving ode is to my CF friends. It is because of your love and support that I have been able to find the strength to survive the transplant train, two dry runs and one very successful surgery.

 I can’t wait for Deanna’s hard part to be over; it’s pretty nice on this side of things.  I can’t wait for us to all be living lives as normal girls (who happen to take a lot of pills and are no longer allowed to lick doorknobs). I can’t wait to see what the future holds for us and our very patient support people who have sacrificed so much to get us to this point.