I've been on Trikafta for about 11 months now. It has radically changed my life. I am not "done" with CF, but I feel closer to being "cured" of this affliction than I ever thought possible. My gratitude to those who developed this drug is vast and inexpressible. I may live several decades longer. The price tag is unreasonable (about 30 times more than I make in a year) but thank the gods my insurance pays for it! I fervently hope that all qualifying CFers everywhere in the world can gain access to this drug. I do less than half of the breathing treatments I used to and my lung function has gone up about 10%. I no longer rely on antibiotics anymore - I've only had them twice since starting Trikafta (once using IV antibiotics during the "flu-like thing" described below, and once with oral abx in May). I have a taste of what it feels like to be "normal"!
Which brings me to my third point: interestingly, Trikafta made my diabetes "worse". By worse I mean more unstable. My pancreas has gotten a little excited and wants to produce more insulin, but does so delayed, so I can often get a roller coaster of peaks and crashes that is both exhausting and dangerous. I have had issues with reactive hypoglycemia for about 20 years, progressively getting worse. So now I'm radically changing my diet and going low-carb in a pretty strict way, which helps. More on that later.
Fourth, for a period of time over the winter I was convinced that Trikafta had negatively effected my mental health. For about 4-5 months I had a very severe depression with some extra anxiety. I thought about using an anti-depressant drug but I resisted and instead took herbs and started therapy. I feel SO much better, so I believe it was not (primarily) the drug itself biochemically changing me, but my psycho-spiritual reaction to the change. There were a number of other life situation factors too which I won't get into. I call it a "reverse-existential crisis", that is: Oh my gods, I'm going to live 20 years longer than I thought... now what do I do with the rest of my life?!? I had a lot of feelings of (survivor's) guilt, life-calling uncertainty, existential fear, and so on. A therapist helped me though it and I've made a huge (and ongoing) spiritual transition. I know that others have reported mental health issues after taking Trikafta, and I encourage people to look into the psycho-spiritual dimensions of this transition. It certainly can be acting on a biochemical basis as well, but don't ignore the huge life-trajectory change this causes in each of our lives and the profound psychological impact that can have on our subconscious. There is an identity crisis with every rebirth, and for me, Trikafta began a rebirth process.
In the middle of this whole depressive episode last winter, I got a "flu-like thing" (which tested negative for the flus) in February. I suspect it was COVID (I had caught it by working at a university book store where I interacted with international students), but at the time there was no testing going on, so I can't say if it really was COVID (and the antibody tests are not yet reliable). I had all the typical symptoms: extreme sore throat, fatigue, high fever, and later on lung issues. After a few days of trying to deal with it on my own, I started to get lung pain and at that point went to the ER. We treated it as if it were a lung exacerbation (which I had not had since starting Trikafta in October) and later X-rays showed it was a budding pneumonia. It was the first pneumonia I think I've ever had, and wow, it was SO different than a normal lung infection. I certainly would have died if it wasn't treated immediately. For weeks afterward I felt weak and jittery and had a lot of anxiety - I had almost just died... there was a lot of fear, a lot of existential questions arose. On top of that, the "flu-like thing" caused a lingering ear infection that lasted for a month or so, and I think I've lost a little hearing on the left side. I had several panic attacks during that time. It was rough!
And then, the cherry on top was that I got 25+ kidney stones a couple months later in April. It took about 6 weeks for them all to come out. I believe that the acute bodily stress and dehydration that a severe virus can cause led to the formation of these stones, plus I was eating a diet very high in oxalic acid and didn't know it. I also am bad at drinking liquids, but I've fixed that now. Once that was done I felt loads better, both physically and psychologically, and from the end of that episode forward I made a huge psycho-spiritual transition. Then in late August, a kidney ultrasound (which should have been done in April but was delayed due to COVID) showed a huge kidney stone blocking the right kidney and causing silent hydronephrosis. The next week I had an urgent surgery to remove it, but it was so big they could only get half out and the following month I got a second and final surgery. Again, I think this stone was formed back in February and just slowly grew since that time.
So I have radically changed my diet and drinking habits to prevent kidney stones! I now have a low-oxalate diet, which is very limiting, and I drink at least 3/4 gallon of fluids per day. I had to cut out many staples to my diet: almonds, quinoa, tofu, tempeh, potatoes, chocolate (waaaahhhhh!), and so on. I take calcium citrate with meals (which bind to dietary oxalate to prevent stones) and potassium citrate to increase the urine pH. I drink a quart of kidney tea daily which contains goldenrod leaf and flower, yarrow leaf and flower, and gotu kola leaf. At the same time, it has helped me eat much healthier than before and I've taken this opportunity to go STRICT zero sugar and low carb. My diabetes has hugely improved as a result - my A1c dropped from 6.1 to 5.5 in about 3 months! I also have had to reduce my animal protein consumption due to gout, so the majority of my diet is just apples, low-oxalate nuts, and vegetables. I'm learning how to appreciate subtle flavors and I am eating a diet pretty similar to what my Gaelic ancestors ate, which feels good. And I am so proud of my garden this year - I've grown tons of kale, green beans, basil, zucchinis, arugula, lettuce, and radish greens. The sunchokes are gonna be off the hook come October!
Right now, I am shifting my focus away from seeing clients and towards writing. I have the feeling that I need to learn another modality to augment my herbal practice. Honestly, I feel that for many (maybe most) clients, psycho-spiritual issues are profoundly connected to their physical issues (for there is, in reality, no division between mind and body - screw you Descartes!) and so I find that suggesting the use of herbs or diet alone doesn't always address the root causes of the issues. This is especially the case if the root issue is preventing the client from following through on diet or herbal suggestions, which is pretty often. So I'm trying to develop ways to address that issue, which means I'm taking a step back from seeing clients. Ultimately, I want to be as helpful as possible, and if I feel that I'm not being as helpful as I want to be I need to step back and look at the problem in a different way. Cultural pathology is a huge cause of physical pathology in this society, and my ultimate goal is shifting culture to be more holistic, sustainable, equitable, and grounded in the sacredness of all life. Writing stories that challenge the conventional assumptions of modern Western culture is part of my life calling, and so I'm trying to figure out what that means for the next phase of my life.