Long time, no speak!Trikafta has truly saved my life and I'll preach it 1,000,000 times because I can easily say it is the reason I still have my original lungs and I'm here today. I am enormously grateful and blessed to still be alive and even more pleased to finally be capable of living like a semi-normal human. My biggest struggle from day to day is chronic pain, which is limiting and debilitating to an extent, but I can sleep in my bed again instead of on a reclining couch connected to a bi-pap machine. I can laugh! I can occasionally jog short distances. I can walk to the bathroom without throwing up from coughing or getting a fever and having tachycardia. Life is radically different on Trikafta. I do still have Cystic Fibrosis, and my lung function is still only 44%, which is actually quite good considering the permanent damage to my lungs and issues I experience pre and post-Trikafta. My weight fluctuates. The downside of Trikafta is the neurological and mental side effects, of which there are many and I am seemingly affected by most of them. I have gotten incredibly lucky with the timing of Trikafta coming out on the market, had it been introduced any later and I think my circumstances would be quite different.
How tremendously difficult it has been to go from expecting to die most of my life to planning what I'm going to do with my time. It has been an adjustment, to say the least, and something I never want to take for granted. I do tend to overload myself with to-do lists that add to my stress because I never want to go back to what life was before and that is something that deeply haunts me. I do my best to try to occupy my mind and body, but also to balance that with rest and burnout, which is difficult. I never realized the sheer amount of anxiety and panic that would come with remembering the medical tests and challenges I've overcome to get this far. There has been a lot, and I marvel at those who have undertaken so much more and are still doing their best to thrive today and be genuinely happy people. I think of the impact this journey has had on my family as well, particularly on my son, Aiden. He doesn't remember having a "sick" mom. He still knows I am "different", and once helped me as a toddler to stay "well", even though "well" really wasn't well at all. He sees me take pills, do my inhaler, breathing techniques, hook up my feeding tube, etc.. but he doesn't see or hear the constant coughing, throwing up, crying from pain, fevers, sweating, rocking back and forth uncomfortably, etc.. that is all gone. It's almost like it was a figment of my imagination, which is wild. It still hits me sometimes and feels incredibly real. It's hard to believe sometimes it was real and at other times it creeps back in bit by bit and I am terrified.
My biggest fear I think is losing the physical inability to function and be a mom again, while my mental was still very capable and aware that my body has failed me. There are many scary thoughts to go back to, and I think it's important sometimes to visit those and remember them to keep me grateful, and acknowledge the truth, but to keep it at arm's length so I don't get swallowed up whole and consumed by it. I think the brain does an incredible job of shielding us from trauma in its entirety, thank goodness, but that doesn't mean it doesn't still exist and needs to be dealt with.
In becoming "healthy," my life faces many new challenges on how to function as a person in society and in my household. It's been over a year or two since I started Trikafta and was taken off of the transplant list for being "too healthy". It's taken almost exactly that long to finally believe that this is my reality and that it might stay and last longer than any of us could've possibly expected. I've gotten plagued with viruses after Aiden started preschool. I tested positive for Rhinovirus multiple times, ended up in the ER once for strange and incredibly painful symptoms, and yet another positive result for Coronavirus OC43 (Not Covid-19, more like a cold). We are on our own journey with him as he likely has asthma. He has also been plagued with viruses and one of them we both had took two months and several medications for us to recover from, finally. We both started wondering if we were ever actually going to get completely better again. I didn't know what to say, but to try to remain hopeful and positive.
I hope you make now your time, for whatever you want to do in your life. Don't wait.
-Sara ♥
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