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!

Thursday, November 29, 2012

Stuff I'd like people to know:

It’s been over a year that I’ve been off work because of my declining health and quite frankly I often get a little tired of people asking me if I get bored during the day or if I struggle to find things to do throughout the day. Then I thought, some people just don’t know much about my CF or about my daily routines or about the fact that going back to work is not a choice that I have the privilege of making… my health has made that choice for me (as much as I’d like to believe that I actually made this choice). So, I’ve decided to put together a list of things I’d like people to know. Things I feel strongly about and other things that are just, well - me.  I understand that whether people read this or not, is out of my hands. I haven’t blogged in a long time and may have lost the interest of some readers. Nonetheless, I’d like to put these thoughts out there.

·      Mornings are the hardest for me. I’m out of breath, I spend 2 hours on inhaled medications, physiotherapy and breathing exercises and I’m usually coughing up so much mucous it makes talking difficult. So… if you want to actually talk to me, call in the afternoon or evening.

·      It amazes me how much sleep and rest my body needs. In a good week I can get up around 9am and finish my meds by 11am, attend my medical appointments, get errands done, get dinner ready and maybe even have a visit with my sisters, niece and nephew or go for a coffee with friends. In a bad week I need to sleep until 10 or 11am. I don’t finish my morning meds until about 1pm and I get exhausted after only getting one thing done a day (e.g medical appointments, grocery shopping, taking Bettie our for a walk or cooking dinner). This is a BIG change from when I was working. I’m still getting used to the fact that my body works everyday to fight whatever infection I have and it’s taken a long time for me to realize how important rest is.

·      Although everyone loves to hear that they look great, I actually get tired of hearing this. Please don’t think I’m being conceited but CF is such an inside disease. Although I may have done myself up with makeup, I often feel like crap on the inside so hearing I look great is not necessarily what I like to hear because it’s not a reflection of how I feel. What I DO appreciate is being asked how I’m doing and having the freedom of giving an honest answer. Having people just listen and show they care can be incredibly supportive and helpful.

·      There are days when I really struggle to stay positive. I’m in new territory with my health and I’m learning how to look on the positive side like I always have. I’m learning that support is something that helps tremendously. Support and love from family and friends has never been more important. I hope people remember this.

·      Animals are amazing creatures to me and they are often where I get my positivity. My life list includes a lot of experiences with animals including one I got to do a couple weeks ago with a friend. It was INCREDIBLE! I would highly recommend the dolphin encounter at the Vancouver Aquarium. I was so impressed and amazed!

·      There are times when I love to lose myself in a great book, a fantastic movie or a hilarious TV show in order to forget about my disease.

·      Almost everyday I think about our (James and I) desire to have kids and I wonder if this will actually ever happen. I want to believe it will, but my decline in health puts a HUGE barrier in front of this dream.

·      I never want to be the kind of person who is defined by their struggles. But at the same time, for some reason I want people to understand how tough living with CF can sometimes be. I think it’s because I just don’t look sick, so people automatically assume I’m a regular person who’s just taking a bit of time off work and who just happens to cough a lot. Not that I’m not a regular person… you get what I mean.

·      I have the most wonderful family, quite possibly in the whole wide world.

·       I ’d love to meet Ellen DeGeneres one day and tell her how much I love her show and how it’s always been such a great distraction for me. From the many times I’ve been sick at home on IV or in hospital, the times I was waiting for James to wake up in ICU after his accident, to the times I simply needed a laugh.

·       There are many places I’d love to visit such as; England, Scotland, Spain, France, New Zealand, Africa and also do a road trip through the States and back across Canada. I’d also like to do these trips free of CF-health worries!

·       I’d love to go to a live taping of Late Night with Jimmy Fallon. I have a major crush on him and I absolutely love his humour and his ability to be genuine with his guests.

·       I loathe cigarette smoke. It killed my mother-in-law and it was a huge reason why my loving grandmother developed lung cancer even though she had quit smoking for nearly 35 years. I don’t understand how people choose to worsen their bodies just for the feeling they get from smoking a cigarette. If that’s not an addiction, I don’t know what is.  I just hate watching people throw their lungs away while I do everything I possibly can to prevent my lungs from getting worse. What a privilege it is to choose the fate of your lungs versus having that fate decided for you.

·       Having said that, I am so very very VERY proud of people who have QUIT smoking! I don’t know what it’s like to be addicted to nicotine, but I can appreciate how difficult it is to kick the habit and that’s why I am so very proud of those who have quite. Tara Wood you are awesome!!!

·       I find it funny and irritating when people ask how I’m doing and I respond with an honest answer such as, “Well, I’ve been needing a lot of sleep lately, my breathing isn’t great and I’m coughing a lot more”. And they respond with “Ya I’ve been feeling under the weather too lately. I think there’s something going around”. This isn’t feeling under the weather. This is CF, which you don’t have. So please don’t compare yourself with me. But thanks for asking how I’m doing instead of saying “Well you look good anyway”.

·       Sometimes I wonder how certain doctors or nurses passed their exams and got into the health care field.

·       I’m so thankful the doctors, nurses, physiotherapist, dietician, pharmacist and social worker at the CF Clinic are GREAT at what they do!

·       I strive to be grateful for everything in my life on a very regular basis. I really do have so much to be thankful for. But I must admit this is sometimes a struggle as I get older and don’t have the things I’d like in my life, like children. It’s something that challenges me and something I think I’ll always need to work on.

·       I hope I never become a person that complains about the most mundane things on Facebook. I’m all about venting, but before you post whatever your complaint is publically…. Think about who might read whatever you’re posting and think about how good you actually have it. I include myself in this.

·       I think I’d like to write a book one day.

·       I have a serious crush on Channing Tatum… please don’t make fun of me like my husband does!

·       Nausea and being out of breath are the two things I hate most in this world.

·       I admire people who are able to put their worries aside and focus on something positive.

·       Schmitt from New Girl is quite possibly my favourite TV character ever… and Phil from Modern Family… and Cam.

·       In no way do I think my life is really hard. I mean, I have a great place to live, I have an amazingly loving husband who I almost lost 4 years ago but didn’t. I have the most supportive family anyone could ask for. My dog is hilarious and I love her so much.  And I have the privilege of knowing some of the greatest people in the world (to me). But part of me feels it’s just not enough. I want more out of life. I want to be able to travel when I want and not have it depend on my health. I want to have a family of my own. I want to go back to work. I want to spend the hours I currently spend on my health each day doing something fun. I want to make a difference in this world. And most of all, I want my life to move forward instead of standing still.

Thank you all for reading and for your support. It means the world to me.