My whole life my lungs haven't been great, they've been manageable, but still not great. Then about four and a half years ago things took a turn for the worst. my daughter was about ten months old, and I started getting lung infections. This was nothing new for me, it was quite common because of my asthma for me to end up down and out for a couple days every fall, and winter. Needing antibiotics and a few days rest to get back to normal.
Except this time, it didn't go back to normal, I finished the antibiotics, just for the infection to stay the same. Heading back to the doctor to see what was happening and leaving once again with another round of different (stronger) antibiotics and a narcotic laced cough syrup, (that tastes way better then it should) to help me sleep.
Fast forward several months and I've been back at work, all while battling a seemingly endless lung infection, raising a toddler, and being more exhausted than I ever remember being in my whole previous existence. My doctor deciding that a lung infection for almost a year is probably a bad sign, sent me off to a specialist, who decided after several tests, (x-rays, CAT scans, blood work) that it's a really bad, drug resistant infection and once again I'm sent on my way with what I was told is a super drug.
No surprise here Super Drug worked for about three weeks before once again the infection came back, at this point I was beyond tired of feeling like crap and spent most of my life either on auto pilot or sleeping.
Finally I was given a diagnosis, as to what was happening with me and my lungs, and confusing diagnosis, but an answer all the same. I have what is called Bronchiectasis, which was described to me as a permanent bronchitis. I was taken off work, put on a sick leave, where nothing really changed in six months. When I returned to work it was part time (three days a week) and still was just constantly sick, needing antibiotic intervention at least twice a month to just get by.
My specialist decided he had done all he could for me and sent me off to a different specialist, and she has honestly been a huge blessing, and the reason for so many changes in my life. She refuses to give up on me, promised me in our first meeting (which was her very first appointment, in her new practice) that she understood how it felt to have so many doctors just give up (at this point my GP, first specialist, and a respiratory therapist all had) and that she wasn't going to quit until she had better answers for me.
Let's do more tests, shall we? Including a few very scary tests that were looking for terrifying things like Cystic Fibrosis, (we did that one twice). Another specialist joined the team, this one in Toronto and at 30 I visited Sick Kids for the first time in my life to get said Cystic Fibrosis test. Because apparently what no one had ever told me, was that Bronchiectasis usually stems from CF and , there was little other explanation anyone could find. At this point I also was seeing a plastic surgeon to see if I needed a nose job due to a deviated septum, (turns out I didn't). I also popped negative for Cystic Fibrosis, which was honestly a huge relief.
But with all these negative tests, we still weren't getting answers there was still no why. So we did one more, this one a scope of my lungs. It was scary and a little exciting because I could finally have the why. But it only confirmed what we already knew, that I have Bronchiectasis.
True to her word though my lung specialist hasn't given up, and with help from my allergist, they got me what I needed to get me on to this new(ish) drug that according to my specialist, "will be a huge game changer." I started Xolair in September, and although it is a mildly terrifying drug, given that it can cause anaphylaxis (among many other big side effects) it seems to be helping. For the first time in my life I went an entire winter without needing to go to the emergency room for antibiotics for lung infections. Which is a huge accomplishment.
Every two weeks I go to get not one but two (one in each arm) injections of Xolair. Sure it's inconvenient and I now have to carry an epipen but so far the results have been great. I can actually almost function on a human level, and like I mentioned previously I'm not needing antibiotics and narcotics every two weeks.
However in my most recent meeting with my specialist (yesterday) she told me a few things that I had yet to hear the whole time I've been dealing with this. When I started seeing her I had less than 30% lung function, and for those keeping score at home, that's not a lot. She went on to say that, this combined with how frequently I was getting infections, I was incredibly close to being put on a list for a lung transplant.
This is one of the scariest things I've ever heard in my life, that I narrowly dodged needing someone else's lungs in my body, because mine really had (as I often joked) given up on being lungs themselves. Although I dodged that for now, making great strides and improving my lung function, just enough to no longer be considered deadly. However she was sure to tell me, it could still be a reality for me sometime in the future.
But for now, I need to stick with my regimen of daily medication, including several vitamins, and the Xolair injections every two weeks. My specialist also wants me to start doing at least 20 minutes of Cardio workouts at least 3 times a week (more would be better). Along with my lung physical therapy that I'm supposed to have been doing daily for the past two years, but often forget, (I get busy and things slip my mind) to help improve my lung function.
I need someone to keep me accountable for both the workouts and physio, at least for a few months until I get into a routine, I know myself well enough to know, I might (will) forget. But hearing how narrowly I dodged needing a major life changing surgery at not even 30 years old has kind of lit a fire under me for the time being to make myself a plan and stick to it.
My lungs aren't perfect, and I will never have full lung function again, no matter how hard I work, and what medication I take. But right now I'm still breathing on my own with the lungs I was born with and it's better than it could be. It's better than it has been. My illness doesn't define me, but it is a major part of who I am. Some days are harder then others and, I can only expect that, but I'm doing my best not to let it get to me, not to let it drag me down. I can't I have too much good in my life to just lay down and quit.
This got long, but I needed to let everything out, I needed help to process everything I was told yesterday.
Until next time
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