My name is Heather MacInnis. A little bit about me? I’m 25, I have a lot of tattoos, I’m 5’0, I love music and books, I’m close to finishing a degree in Religious Studies and Sociology, I have two cats and a dog that sometimes thinks he’s a cat, I have a big family, great friends and Cystic Fibrosis.
For a long time Cystic Fibrosis was one of the last things that I would mention when describing who I was and sometimes I wouldn’t include it at all. Sure I’ve always had daily treatments; aerosols and physiotherapy morning and night, handfuls of pills everyday but I could hide that from people. And ok, I was in the hospital 3-5 times a year which was harder to explain but I was healthy when I was out so people kind of forgot about it. Looking at me, most people would never know anything was wrong and that’s the way I liked it. I never wanted to be defined by my illness, I didn’t want sympathy or special treatment; all I’ve ever wanted to be was normal and for a long time I was able to “fake healthy” and be like everyone else…at least in public.
Cystic Fibrosis is a genetic, chronic and fatal illness. It affects 1 in every 3600 people here in Canada. When I was a baby my parents were told that I would live to be six; the big joke this year at my 25th birthday was that my CF was 19 and was therefore old enough to drink. One person dies each week with CF and sadly over half of those people are under the age of 28. As of yet there is no cure for Cystic Fibrosis but here’s the good news; the life expectancy has gone from about 6 to 36 just in my lifetime. New treatments are coming out all the time and the number of CF patients getting lung transplants has more than doubled in the last decade.
A transplant is like a second chance for somebody with Cystic Fibrosis. Over time the lungs of a CF patient become damaged from infection and they become dependent on constant rounds of antibiotics, increased daily aerosols, physiotherapy and O₂. That’s where I’m at. I’ve been in the hospital six times this year for stays ranging from three to five weeks. I used to be fairly healthy in between stays but my good days are now what I used to call my bad days. I spend three to five hours a day doing treatments and have appointments and check-ups on an almost weekly basis.
In these last few months my health has really taken a turn for the worse. I haven’t been able to stay out of the hospital for more than four weeks at a time and was told at my most recent specialist appointment that I will now be hospitalized in three week intervals; two-three weeks in, three out and so on. I also found out that my lung function is down to 20% and my weight is down to 100 lbs. If I were to catch something bad right now, I might not be able to fight it. In order to help me gain weight I’ve had a PICC line put in and I’m receiving TPN along with my IV meds. I am now wearing my O₂ day and night because not only do my lungs require the help but so does my heart. I have developed Pulmonary Hypertension which means my heart has become strained from trying to compensate for my lungs. My Co2 levels are also too high so I now have to sleep with a Bi-Pap machine that will help keep my airways open while I sleep. I take handfuls of pills everyday for a multitude of reasons and they’ve recently added some liquid meds into the regimen, one to help keep my bowels clear and Vitamin K to help lessen the amount of blood that I cough up. I have to take regular doses of pain meds just to handle my lung and muscle pain; alleviating it isn’t really an option. Basically my whole life has become dedicated to staying alive.
Now please don’t take my list of ailments as complaints or assume that because I’m unhealthy I’m unhappy. I have my ups and downs like everyone but I’ve got to tell you, for the most part I consider myself pretty lucky. I have a big family who love and support me (good mood or bad); I have an incredible boyfriend who has somehow managed to stand by me through all of this and has helped keep me feeling like a person, not a patient; I have amazing friends who are full of encouragement and always quick to lend a hand; I reside in a country where I have access to excellent healthcare and finally I live in a community that eagerly pitches in to make-up for what the health system doesn’t cover.
I need a double lung transplant and I need some help to get one. There’s a lot of expenses that go along with having a transplant; there’s some equipment and med charges that aren’t fully covered, transportation costs once we’re there (I’ll have to be at the hospital at least three days a week), meals, rent, etc. My support person and I will be unable to work and sadly, the bills don’t stop just because your income does. I’m asking for donations to help cover some of these costs.
Getting a transplant will mean more than I could possibly describe here. To be honest, this is all happening really quickly for me and I haven’t totally processed the idea myself. I have no idea what it’s like to be healthy but I’m ready to find out! Provided that everything goes well, I get a whole new life; one that does not revolve around med schedules, doctor’s visits, and hospital stays. I will not miss having to avoid stairs and hills, having to take breaks when walking short distances, getting short of breath while trying to get dressed or having to stay home while all my friends are out having fun. I have no desire to be special, important or famous; I just want a chance to be twenty-five, normal and healthy. Your donations and this transplant will give me that chance.
Sincere Thanks,
Heather MacInnis
