Trikafta Day 18: Clear Mucus and Saliva

SALVATION STORM: I’m almost 3 weeks into my gene modulator treatment, and I’m finally morphing into a pitbull; I’ve adopted this breed’s saliva-producing capabilities. Recently I’ve noted that I find myself slobbering up a storm, not just when I’m eating, but when I’m speaking and exercising. While I’m sure that the paws and tail will be coming by day 21, for the time being I’m still human. #animagus

TRIKAFTA DAY 12: Fixing my Error

4 days after fixing my Trikafta administration mistake, things have begun to change even more–I guess there’s a reason your supposed to take Trikafta with enough fat.

IN THE BATHROOM: Because I’m overly dedicated to noting ALL sensations and changes that I’ve noticed since starting the new modulating drug (though read my disclaimer before you break into the legal paperwork), I will now crack open the stall door and give some TMI insight into how my digestion is doing (if you aren’t taking this drug yourself, and would still like to have an appetite tonight, skip this section of the post). My urine is like my baths–bubbly and warm. While I am happy to report that my pee has always been warm, the excessive bubbles are a new feature I’ve noticed in the past week. As for news from the other end, my male pregnancy (ie. Bloating) has ended, and things have been flowing–almost too freely. This “freedom” has also been associated with some digestive discomfort (although I have Chronic Pancreatitis so this is the norm). Overall, my digestion is like a New York Times bestseller– an unpredictable tear jerker with a personality of is own.

THE LUNG REBIRTH: Over the past day, I’ve noticed that I’ve been more congested in my lungs–not less. While normally increased congestion is a bad thing for people with CF, my doctor warned me about The Mucous Purge–it should get worse for a few weeks, but then be gone forever.

Day 7: My Trikafta Mistake

WALNUT MAGIC: Feeling adventurous, I added half a walnut to my normal breakfast consisting of 2 pieces of popcornopolis popcorn (lots of coconut oil fat) and peanut flour. After adding just half a walnut to this “meal” I felt tremendous–similar to how I felt after my initial dose. Needless to say, I think I’ve been taking Trikafta sub-optimally; I NEED MORE FAT. Alas, just when I thought things were going to stabilize, and my blog content would be even less exciting, things changed yet again.

Trikafta Day 6: Bloating

MALE PREGNANCY: This afternoon I was almost convinced that I was on the verge of giving birth–given the watermelon-sized bulge emanating from my gut. Fortunately, I did not actually have a child; my main hesitation regarding bearing a child revolves primarily not knowing what to name him/her, closely followed by my concern that I’M A MALE. As with all the sensations that I write about, I cannot ascribe this “feature” necessarily to Trikafta, as I am notorious for my bloating, and seem to be an expert in constipation #TMI

Cystic Fibrosis: My Depression Remedies

When I’m on Tobramycin inhaled for a lung infection, I often have difficulty sleeping, feel constantly tired and ill with migraines, and also feel mildly depressed. The mild depression lingers beyond the course of antibiotics, but is ameliorated slightly with time away from the course.

Here are some things that I’ve found, surprisingly, help me a lot with my mood! These help me even when I’m not on the antibiotics (1+ years later)! I assume it is because of the post-antibiotic effect of aminoglycosides. If you, or someone with CF, has irritability or depression and has been on tobramycin or gentamicin, you might want to try a few of these tricks! The first 3 listed items are the most potent for me!!

Aspirin 41mg (half of a baby aspirin) and 1.25mg of pure melatonin (no l-theanine, or other additives) I take this when I wake up in the middle of the night or too early in the morning (I’ve taken the aspirin every day for 2 months, and the positive effects seem to be compounding…. Starting to feel better in general than I have in 1+ years)

DL Methionine 400mg, 2 times a day with food while following a high protein, Low FODMAP diet. This really helps me a lot. I’m doing this in conjunction with the above, and it seems to be helping quite a lot.

Vitamin D3 supplement (2000iu) This one has had a remarkable effect on my mood for just being a vitamin! I’ve tracked my self-confidence with and without vitamin d, and I found I’m much more self confident with the supplement!it could be psychological… But who cares if it works! 🙂

Here are some other things that definitely help:

200mg NAC I don’t think that this has had a huge impact on making me feel better, but definitely does something.

Copper supplement (2mg), vitamin e 100iu, vitamin K2 100mg

Here are some studies on the interactions between melatonin, aspirin, D methionine, NAC, Vitamin E, and aminoglycosides.

Melatonin: https://www.ncbi.nlm.nih.gov/pubmed/21673362

Aspirin and Vitamin E: https://www.hindawi.com/journals/ijoto/2011/937861/

D Methionine: https://www.ncbi.nlm.nih.gov/pubmed/26166286

NAC: https://www.hindawi.com/journals/ijoto/2011/937861/

Keep fightin CFrs!!

Cystic Fibrosis: My Struggles with Sleep

Ever since starting Tobramycin inhaled for a pseudomonas infection, I’ve had trouble getting restful sleep. I have trouble going to sleep, and I wake up too early in the morning. While at first I did not associate with this with the Tobramycin, I now see in retrospect how I believe it has affected my sleep. There are even studies now showing that Tobramycin somehow affects our sleep cycles: https://www.ncbi.nlm.nih.gov/pubmed/26282839

Tobramycin has continued to affect my sleep even after the I’ve stopped the course of antibiotics, perhaps do the post-antibiotic effect of aminoglycosides. My doctor said that the effects of Tobramycin inhaled are cumulative, and for me, it seems as though it’s cumulative in making my sleep poor and feeling completely wiped out all the time.

Even after being off Tobramycin, I found that the following has really helped improve my sleep. I’m not saying that you should try this, but it really helps me, so I thought I’d post:

Aspirin 41mg (half of a baby aspirin) and 1.25mg of pure melatonin (no l-theanine, or other additives)

I take this when I wake up in the middle of the night or too early.

Here are some studies on the interactions between melatonin, aspirin, and Tobramycin:

Melatonin: https://www.ncbi.nlm.nih.gov/pubmed/21673362

This study recommends three milligrams of melatonin a day.

Aspirin (and many more): https://www.hindawi.com/journals/ijoto/2011/937861/I

Trikafta Day 5: Mucus Monday

LOSING MY SUPER POWER? Today, a few hours after my self-proclaimed “Olympic level” athletic performance (ie. 45 minutes on an elliptical), I noticed a marked increase in mucus in my throat, nose, and lungs. For you “snot connoisseurs” out there, this mucus was thin and clear–much less “impressive” than my usual thick green mucus. I think that my snot has finally met its kryptonite, and I am losing my losing my secret superpower of thick, sticky mucus.

Trikafta Day 2: Sweaty Palms

SWEATY PALMS: I don’t know if this is a common thing for CF folk, but when my hands get wet, they get EXTREMELY wrinkly; when I get out of a hot tub with friends, I get comments on how the impressive (?) the wrinkles on my hands look. My body looks 25, but my hands look 80. As I’ve started taking Trikafta, I’ve noticed that my hands get this coveted “aged” look VERY easily, as my hands have been sweating up a storm just doing ordinary activities such as writing this post. #EmperorPalpatineHands