Tuesday, December 18, 2012

The T Word

I think it’s safe to say that for anyone with Cystic Fibrosis, when the word transplant comes up during a hospitalization or a routine clinic appointment, feelings of pure anxiety arise. The thing that has been dreaded all along is now staring you straight in the face.

Back in June when I was in hospital fighting another CF exacerbation, I was told that lung transplant should be considered as a possible treatment plan. A Resident brought it up with a fellow med student by his side (neither of which are my favourite people when I’m in the hospital because most of them act like they know more about CF than I do). Instantly, I was flooded with fear. Pure fear. Luckily my Momma was with me and was able to talk to the Resident as I sat on my hospital bed in tears. I was shocked because a Resident was telling me this. As a nurse, I know that these topics are sensitive and should ONLY be brought up by someone who the patient knows and who is known by the doctor (i.e. regular doctor, social worker, or nurse).

After I calmed down, I was able to talk the CF social worker, nurse and my regular CF doctor. They had a different story and were upset to hear that lung transplant was brought up without discussing it with the CF team first.  They figured the Resident was actually getting me mixed up with another patient. But, my Doctor did say that since the topic of transplant had been broached, maybe it was time we starting talking about whether it might be needed in my near future.

I want to be clear - I don’t blame the Resident. I was just frightened and frustrated in the way it was brought up. As anyone with CF knows, it’s not easy to prepare yourself for that topic. I had built the word transplant up on this intimidating pedestal and was scared to have to face it. I was left with this unsettling feeling in the pit of my stomach despite being surrounded by devoted support from my family, close friends, CF friends and CF team.

Not knowing what else to do, I reached out to some very wonderful friends with CF who supported me with words of wisdom. Soon, the fear I had about transplant lessened, and I was able to take the control and fear away from the word transplant. They say knowledge is power. So last week, I put my fears aside, and went to the pre-transplant clinic for information. My family and I met with the nurse and Respirologist and knowledge is what we got.

We learned that lung transplants are now considered an extension to CF care rather than a last resort. Stats for people with CF after lung transplant are actually quite good (90% survival rate after the first year and 75% after 5 years). Your new lungs no longer have CF, so there’s no need for long physio sessions or countless inhaled meds. And you’re not burdened with a constant cough and over-flowing mucous.

However, lung transplant come with risks and complications. Rejection is the greatest concern and the anti-rejection medications are very hard on your body. So basically, you’re trading one set of issues for another. But, you’ll have better lung function and regain the ability to DO things!

So, all in all, having a new set of lungs may give you the chance to live in a way that you haven’t had the chance to in a long time, but the side effects are harsh.

Right now, my lungs are somewhere between being too healthy to need a transplant (which I’m thankful for), but not healthy enough to work, travel freely or have a baby. I don’t know where that puts me but I suppose for now, I’ll focus on what’s important in life.

During this holiday season, I hope you take a moment to be grateful for what you have, be silly with your partner, kids, dogs, friends, or family. Laugh until your body is filled with joy. Hug each other tightly. Surround yourself with happiness and love unconditionally. That’s my plan. 

Merry Christmas everyone, and Happy New Year!

Tuesday, December 4, 2012

My Momma

This blog is for my Momma.

She is a woman like no other and has more energy then anyone I know. She has been the President of the Campbell River Cystic Fibrosis Chapter, the President of Cystic Fibrosis Canada, she’s travelled the world to different CF conferences. She, with the help of her husband and a few incredible friends, founded the Campbell River CF Chapter from the ground up. This chapter is in the top 10 in Canada for fundraising per capita and is now one of THE most successful chapters. Not only has she contributed to a CF Chapter that has raised millions of dollars over the past 27 years, she has also been an advocate for children and adults with CF in so many ways.  A few years ago, she was involved with lobbying politicians to implement newborn screening for CF – and now every baby born in BC is screened for CF at birth. This woman has done and continues to do more for CF than I could ever imagine. She was even the one who pushed our family doctor to have me tested for CF when I was only 16 months old. 

She and my Dad did my physiotherapy every single day, twice a day. NO skipping. It didn’t matter if we were in the middle of a ferry line up, camping in the woods, or if I was in the middle of some serious play time with friends. They always put my health above their needs while making sure my two older sisters got much needed attention and kept them involved and included in my health. I always say I wouldn’t be anywhere near where I am today without my family, and every time, I truly mean it. It’s because of the strong foundation that my parents instilled in me that I have the strength to face CF every single day.

When I’m sick and on IV antibiotics, she helps me in any way she can from cleaning, laundry and cooking, to just spending time with me to keep my spirits up.  She encourages me when I need it most, she calms my nerves, listens to my worries, venting and complaining (most recently this morning when trying to get things organized to get yet another PICC line inserted in order to start more IV antibiotics), all while keeping up with her work in the CF Foundation. She is the person I look up to and turn to when I struggle. She inspires me and I am so incredibly grateful that she is MY MOMMA.

Recently, she received the Queens Diamond Jubilee Medal. This medal honours significant contributions and achievements by Canadians to their fellow countrymen, their community or to Canada. I mean, this is a BIG deal. Are you kidding me!? I’m proud of myself for making it out of bed, doing my physio, getting some exercise and getting dinner on the table! This woman amazes me every single day and I am so very proud of her. With a mother like this, how can a cure for CF not be found!

I can’t leave this blog post without saying something about my amazing Dad. After all, at every step, he has been beside my Mom, and has contributed to the CF cause immensely in his own right. He’s truly the best Dad anyone could ask for!  I am so very lucky to have these two amazing people called  “The Black’s,” as my parents.  Some may even say I hit the jackpot. 
Congratulations Momma. I’m so very proud of you!