Do you want a cough drop?

I get this question a lot.   I also hear "do you have allergies?", "are you just getting over something"? All nice questions from unassuming strangers, colleagues, and new acquaintances.  The questions come from kindness, but after 32 years of them they get annoying. But, I tell you the questions are a hundred times better than the looks or the shuffles.

This weekend I went to NYC via the train.  When I sat down I asked the girl next to me if we were in the quiet car--she moaned that she wasn't sure but she sure hoped we were.  As usually happens at the most inopportune times (movies, church services, theater productions), my cough went into overdrive.   I could see her start to squirm.  To move herself as far to the right in her chair as she could go.  I honestly don't blame her, it is cold and flu season.  When I travel by plane I often will wear a mask, not for others comfort, but for my own protection.  However after riding the train all summer in my Amtrak Around America trip I realized that trains are much better at ventilating new fresh air then airplanes--so I wasn't worried about germs circulating that badly.

So she started to squirm.  Then stiffen. I could tell she was uncomfortable.  However, I just wasn't feeling it. I wasn't feeling giving the "Sorry you can relax Im not going to get you sick" explanation. So I let her squirm.  Eventually my cough chilled out and I think we were both able to ride in ease.

Thats the thing with CF though.  Its so rare and not visible that no one knows your not "normal".  No one knows you have racks of medicine packed in your bag.  No one knows that you have to have sure you have a refrigerator at your disposal to keep certain things cold. No one understand the importance of a clean hotel room, until you have medical equipment to keep clean and sterile.  But all these things I have to remember don't stop me from getting on the road and being a part of the living.  And they will never stop my wanderlust.

Going On An Airplane.

I’m not one of those people who need to run away when the weather gets cold. I don’t spend the winter months bemoaning my misfortune for having been born in a country that suffers the wrath of proper seasons. I love where I live, I find seasons to be cleansing and with each turn comes a chance for renewal. That being said, when my sister and mother asked if I wanted to go to Arizona for the week, I had been desperate for a change of scenery so I happily followed along.

Travelling post-transplant is much different than it was before the surgery. Back when I still had my CF lungs, I was on such a constant stream of potent antibiotics that I felt that I could lick public toilet seats and still live to tell the tale. My biggest worry was coughing in public and having people around me think that I was patient zero for the latest contagious international flu craze.

In order to keep my lungs happy and healthy in their new body, I’m pumped full of anti-rejection meds that keep my body good and immunosuppressed. If I had a proper immune system, my body would realize that the lungs weren’t in fact mine and attack the foreign tissue leading to severe rejection.

When I pack to go anywhere, my first and most important priority is my pills. I have a giant blue case filled with vitamins, supplements, immunosuppressants, steroids – I’m just basically a walking chemistry experiment. My first concern is whether or not I have enough to last the entirety of the trip and also a few days more in case of emergency. My pills travel carry-on with me without question, which really complicates my ability and desire to travel light.  

When I first started traveling again after transplant, I kept a small supply of hospital masks and rubber gloves in my bag that I had pilfered from hospitals during random appointments. My clinic staffs should know by this point that I get bored sitting in little rooms alone and shouldn’t be trusted. Now three years post-transplant, I gave that up and am getting better and just relaxing and rolling with the environment. Plus I would never really have the guts to wear one of those masks in public anyway.

Post-transplant, you are keenly aware of how the world is one giant mega-germ, waiting to pounce and infect you as soon as you let your guard down. I always have at least two pocket-sized hand-sanitizers on my person at all times (it helps that I carry a giant purse) and I am a compulsive hand-washer. My brain can’t help but keep a mental inventory of all the things my hands had touched between the times I can find a sink to wash and reset.

Going on planes is the worst, mentally, to have to deal with post-transplant. Maybe I lied, subways and buses are also really terrible, although those tend to be much more brief experiences so lets call it a tie. Planes are hours in an enclosed space with over a hundred of hygienically-questionably strangers. Circulated air, tiny bathrooms and the airline plays Russian Roulette with your health in assigning your seat-mate. Now I am the one worrying about being seated next to patient zero…

I always try to board last to minimize the amount of time I am forced to be in that germ incubator. When I sit down, I put my least offensive-smelling hand sanitizer in my pocket and, if I had the forethought to purchase them, I wipe down my seatbelt, tray table and armrests with travel-sized antibacterial wipes. Then I sit and hope to god I don’t get the urge to pee for the remainder of the flight.

I may be over precautious in my methods but that is the world that I live in now. I love to travel and I love seeing the world and having new experiences. My doctors always told me that they give us this surgery so that we can live our lives again and we need to weigh the precautions for ourselves so that we can still get the most out of life. I would never give up travelling, so I guess if I had to, I would wear one of those stupid masks…

Moving Forward

The statistics are that 70% of people with cystic fibrosis are diagnosed by the age of two.

I am, or thought I was, a CF unicorn who would forever defy the statistics of median transplant age and life expectancy – sticking out my tongue as I threw off the curve with my uniqueness. Turns out, I was wrong.

I was diagnosed a month before my 14^th birthday. I had a cough my whole life, I had been sick from time to time. The various doctors my mother lugged me to always thought it was something else like tonsils or sinuses. Finally someone sent me for a sweat test and we finally had our answers.

I am one of the 10% of special CF unicorns who is pancreatic sufficient, which is one of the reasons why my diagnosis was so late.

The year before I was diagnosed, this thing called CF Camp had its last hurrah. Every year, kids would go to camp to meet others with the disease and live in an environment where the cough and the medical treatments were just a normal part of every day life. Unfortunately for me, new infection control protocols of the mid-90s dictated that kids with CF really should keep their distance from each other and camp was no more. The nurse showed me pictures of smiling kids at camp, bonding over inhaled treatments but I never got to go and meet others like me.

The day I dared to join that message board changed my life. The other Internet peoples intimidated me with their profound CF knowledge and total immersion in CF life. To me, I was never going to let the disease define me so took my medications and went to the doctor like a good girl but I never paid very close attention to my medical file. When I added my post, something about being in university and looking to meet other ‘gooey’ people, I got a few ‘welcome to the group’ responses from some of the more active members but later that night, I found a message in my Hotmail account from a girl who saw my post and wanted to introduce herself.

Our commonalities were staggering, we were both in the same year of university and had been born two days apart but the real connection came from realizing that we both had very similar views on life, despite growing up in different countries 2000 miles away from each other. Katie was the first person to understand how embarrassing it was to cough in a busy lecture hall, she could commiserate with me about being afraid of intimate sleepovers when it came to that weird sleep moaning that oddly comes with CF. From the beginning, I knew that I could trust Katie with any thought or fear and she would completely understand.

When my doctor shattered my world and told me it was time to think about transplant, I was devastated. It destroyed me because to me, transplant meant that you were at your end and my mid-20s were nowhere near the age of CF life expectancy when people should consider transplant.. When I told Katie, secretly, I was so scared of moving to the next step of this disease and no longer having her to relate to. I was afraid that having me go through this would scare her too. I went on, promising to go through it first and make it look easy for her.

Of course, she supported me the whole way through.

Now I’m on the other side of CF, the post-transplant side. My new (gently-used) lungs don’t have the CF mutation so my days of mucus and cough are over. I breathe easily like any normal person.

I worry now, seeing Katie deal with infections and other CF exacerbations that her time for transplant will come too soon. She has a zest for life that I have always envied, she travels and loves and eats the exotic foods that make me squeamish. I worry about her having to deal with transplant in a country that lacks the gloriousness of socialized medicine. But when her time comes, I will be there to support her and be excited for her to join me on this side of CF.    

She Just Gets It

My hand is fat and stiff right now. I can tell my friends about it, and they will laugh with me at the sight. They will hope I feel better. They will listen to me. But only Carly really gets it. Only she gets these things that pop up in our lives that ruin the things that are important to us. These more than annoyances caused by CF.

This isn't just a fat stiff hand caused by Cystic Fibrosis-related arthritis. It's a potentially good first date gone awkward when I reach for my wine glass and have to grip it like a five year old.  This is a heroic effort to walk three blocks down a Brooklyn street on what should be an enjoyably NYC weekend trip. This is having to make sure I packed all my medicines and take them on time. The only thing that should bother my body this weekend is the freezing cold NYC winter temperatures, but it won't be. CF will be there.

Carly gets that. We bonded years ago in an online CF chat room while we were both in university. She is my Canadian counter part, born two days apart, diagnosed with CF 13 years apart. We have different starts to our stories, I was diagnosed at one, she at 14. By the time of our third year in college we were relatively the same. In private messages we would sit back and laughed at others who were "CF-obsessed" as I liked to think of it. Every aspect of their lives was so dictated by CF. Topics from how they would pay for this drug, how much of that medicine they were taking, how to close to transplant, or after transplant they were,  how their depression creeped in as their disease got worse. It was as if they were their disease. At that time we were blind, arrogant, ignorant and healthy. We didn't know that it would one day be us---

Carly was first. I'll let her tell you more about it, but she was the first to get really "sick."  I'm probably slowly on my way there now. She had her transplant and is getting stronger everyday---CF eats away at my lungs more and I get weaker.  We are crossing paths in the bright light of day. There was even a time right after her transplant that I wasn't sure we would get each other anymore. She was on the "other side."  She had her "transplant friends." But I was wrong---we have an understanding that is deeper.

So she gets that my hand isn't just fat stiff and uncomfortable--she gets that is a sign of more. An annoying sign of this disease that isn't exactly visible but rules our lives. She gets that I was super disturbed by the old age of the people on the Celebrex website when I was looking up information on the latest drug my doctor is giving me to relieve the pain. Our bodies are old, but we---we are still young.

We thought we would take this relationship and understanding of ours out into the public-- to educate some people about cystic fibrosis, have a dialogue about Canadian and US health care--and maybe let others out there in the CF community know that they too are not alone.  So this is the start of out blog. 

The Beginning

There is something isolating about knowing that you are different. It’s not something we have control over; we were simply born this way. From the outside, we look just like everyone else but on the inside, cystic fibrosis plays it’s coy little games with our internal organs, affecting our health and shortening our lives.

Cystic fibrosis is a disease that affects 70,000 people worldwide. Odds are that many people have heard of the disease, few people know anyone who actually has it. I had never heard of the disease when it fell out of my doctor’s mouth when I was 14. I don’t think I even spoke to another person with the disease until I was 18.

Two years later I was in university, living far away from home and feeling a need to commiserate with someone, anyone about the daily struggles of school and disease and life in general, I reached out on a random CF message board with a wry message and found exactly what I was looking for.

This is a blog about connection: two girls, born two days apart, living 2000 miles away in separate countries and the friendship that developed from the common bond of a terrible disease.