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May is Cystic Fibrosis awareness month. I am not sure how much awareness CF actually gets with people who don't know anything about it, but as a person with CF it is definitely in the foreground. All of this CF awareness really got me thinking (well that and my most recent trip to the doctor), although I still technically have CF it is almost as if I don't. There is a saying about transplant, it is like trading one disease for another, and this past week has brought that statement to light, it really is true. As I see all the post from CFers about their daily struggle it has become clearer than ever to me how different my life has become. I no longer do nebs or my vest any more, in fact I take zero breathing medications. I also hardly have a cough and if I do, it is usually an actual sign of something being up not just routine as it used to be. At my doctors appointment this past week I was reminded of how difficult college life used to be. Post transplanters have it easy. Treatment consists of several pills a day and maybe, if you are like me, some insulin and blood sugar checks. When you have CF lungs treatments have to be done in your room, with electricity and can take over an hour at least twice a day. It can also be tricky to do treatments with a roommate. Pills are easy to sneak, not so much when you are strapping on an inflatable vest and shaking and coughing for twenty minutes at a time. I remember when I used to live with roommates before my transplant I would learn their class schedule and fit my treatments into that so I could do them when I was alone. When going through my computer files the other day I found this. It is a note about doing breathing treatments in college:
It was the moment of truth. I quickly sprang to action, shutting the door, pulling out the huge bag from under my desk. I shoved the grey plastic piece into the wall and the control panel came to life. Click, clack, click came the nose of the clips as I fastened the contraption onto myself. The machine roared to life. Suddenly I was very aware of how quite everything around me was and how loud this machine could be. “what does this thing sound like in the hall, will anyone notice, Oh dear God please let these walls be enough to keep the sound in…” I would think as the minutes ticked away. DING, finally my time was up, treatment one, complete!
I am currently a college student living, in the dorms, with CF. I can remember my first night at school and it was a rough one. In addition to worrying about classes, where to eat, who I would hang out with, how long I could go without doing laundry, and how long a person can survive on ramen, I also had the additions of life with CF and how that would all fit into college life. For me the hardest part was doing my treatments. At home I would usually do them in the living room, alone. I was often the only one home in the middle of the day and the last one up at night and that would allow me plenty of time to get things done. In the dorms I was suddenly thrown into this weird universe where I went to bed “early” and there was always a handful of people around, even if not in my actually room they were for sure within ear shot. I began to get really nervous about treatments. As much as I wish I was the perfect patient and never let my fear keep me from taking care of myself, I would be lying if I said I always did my treatments starting on day one. It took me a day or so to ease into the process. I also waited until I learned my roommates schedule (yes I’m that creepy girl who knew when my roommate had class) so I could do my treatments, in semi aloneness. I ended up setting up a rewards system for myself to get me to do my treatments. Yes a 19 year old used a reward system like a 5 year old to do my treatments on a regular basis, but it worked!
I began to do my treatments every single day and eventually I got the to the point where I would do them in front of other people. I quickly learned it wasn't really a huge deal and most people were interested in what I had to do. In fact one night I let some of my friends try out my vest and we all had a good laugh singing and talking while shaking! In the end everything worked out.
Going to bed was also a whole lot harder pre transplant. I don't know about you (but I'm feeling 22...sorry, I couldn't help it) but I am usually pretty tired by the time I finally decide to go to bed. I just want to climb into my nice warm bed and go to sleep and now I can. Before my transplant it was a different story. Bed time preparations consisted of filing a bag with formula giving a shot and hooking my pump up at best, all that plus an hour long breathing treatment at worst. I know I could have done my evening treatment before bed and hooked up my tube feed before exhaustion hit me, but I seemed to like the extra torture of breathing in medication while my eyes slowly fell, only to be rudely awakened by the ding of the cycle timer of my vest.
I also eat a ton now and gain weight almost effortlessly. My life basically revolves around food, eating food, thinking about eating food, making food, everything I do seems to involve food. Before I would miss meals without even realizing it, I was just never hungry. To be completely honest, eating wasn't enjoyable. Because of the way my lungs (lung really) were the enlarged left lung put a lot of pressure on my stomach and my esophagus was not quite in the right place. This made if hard to swallow and difficult to breath if I ate very much (read as, slightly more than a 2 year old). In fact for the last few months of my pre transplant life, I basically gave up eating all together and was living solely off of my tube feedings. Since the calorie amount was easily controlled I did gain weight but barely. Now, my tube has been out for over a year and I have gained 25lbs in 6 months! In fact, I have gained so much weight my doctor thought there might have been an error recording my weight at my last appointment (well until she saw me, I look like a normal person now!)
The biggest change since transplant is the ability to breath. Let me tell you, breathing is awesome! I am so thankful that I get to experience what most people take for granted. I remember before my transplant thinking how nice it would be to not think about breathing so much. Yes I actually was conscious of my breathing almost all the time. When it works, you don't really feel it, breathing just happens, but when it's not working, oh boy, you are very aware of every single breath. In, pain, suffocation... out, cough, cough, cough... in... over and over again. Now I don't even realize it is happening!
Although transplant hasn't been all fun and games, it has definitely been an amazing improvement over my past life. I am so thankful that I made the decision and was able to get a transplant. Cystic Fibrosis is a terrible disease. It sucks the life out of you as you are more and more incapable of sucking the oxygen out of the air.
|one of my last vest treatments, this was a day or two before my transplant