So it’s hard to put into words the roller coaster that is Trikafta. I was once over the moon with this drug and now my feet are back firmly planted on the ground. My biggest setback to enjoying this drug to the fullest is that I have too much severe disease in my lungs and pancreas. I very naively thought that I would get to be a new person on a new path. So far that is not coming true. In essence this drug has stopped killing me so that’s the good news but it also gave me this false sense of hope. A hope that I could enjoy a different life. I’m not there and I highly doubt I will get there.
People always ask what do I do all day? Pre-trikafta I would say that fighting CF is a full time job and it was but now I have to come to realize that I did not leave that job behind. I am doing as many hours as before but my down time is spent doing things I enjoy instead of merely surviving. My downtime is maybe 6 hours of the day. This is ok, I am not dying anymore. Well we are all dying but I’m not in the express lane anymore. So that’s good.
Coming to terms with this is taking the pressure off of my shoulders to find this new path. There isn’t one. I am on the same path. Am I gutted? No, it’s the path I have always known. I haven’t made that pivot or any pivot for that matter.
The side effects from this drug are a lot to deal with. Fixing broken DNA puts the body into a tail spin of some kind. My eyesight worsened. I have dry eye that could make a desert feel like the ocean. I need more oxygen again. I have dry mouth that is unbearable most days. It makes everything taste terrible therefore I enjoy nothing that I eat or drink. In fact these new symptoms have created more work for me. I have to do hot bean bag therapy on my eyes 3 x a day. I am brushing my teeth 4-5 times a day along with doing fluoride rinses, eating mints and gargling with biotene. I can’t wear my contacts anymore. I despise wearing glasses so that’s been a fun adjustment. My blood pressure has gone wonky. Diabetes is chaotic from day today. These things I had stabilized and lived symbiotically with for years are now wreaking havoc on my body everyday.
On the one hand I feel great in a new way but on the other I am still struggling to function. I am not mad or upset about it. Well that’s not quite true, I felt like I had a flash of brilliance set upon me. But let’s talk turkey- I haven’t known good health in a very very very long time. I know I am only four months in and things may change/re-stabilize. I just think that Trikafta had the audacity to trick me into thinking I could have a new life. Alas I will just carry on. I am, as they say, a senior citizen of the CF population.
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