Making a Splash in Cystic Fibrosis Research!

A and B

2 days in: Yesterday I experienced extreme detox type symptoms. Headache, achey, fatigue, shortness of breath, increased cough and chest irritation. Today… I feel amazing. Normal, no oxygen, bubbly, I’m actually going out and about.

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10 days in Friday I kind of unplugged for the weekend. Honestly it has been a rough 10 days. I started out on the full dose. After 3 doses I started having pretty strong detox symptoms. Horrible headache, muscles aches, nausea, no appetite, just over all feeling really crummy. So I backed off on the dosage to 1 pill 3 times daily for 2 days, then 2 pills, then back to the full dose. Wednesday my gastroperisis went into a major flare up. My tummy completely stopped digesting food. Any time I ingested anything I started puking it up within minutes. To top that off, Friday I started my period. This has also sent my body into a tizzy. I’ve had a migraine headache for 3 days. Insomnia has been full swing as well. My period always throws my body off. The amount of funky, funky stuff coming out of my lungs has been insane. I have coughed up at least 6 mucus plugs and over 3 cups of mucus. At this point I barely cough and mucus just comes pouring out of my lungs. I was experiencing some pretty wicked shortness of breath but as my mucus production has leveled off, it has went away. I think if we got rid of how my period is making me feel, I don’t feel half bad. My chest feels open and I feel like I’m getting deeper breaths. When I do start feeling stuff moving in my chest, it’s deep. It is moving the yucky stuff that’s been hiding forever. So I’m still feeling blah, but I know with Kalydeco and NAC, I felt worse before I felt better.
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18 days in: I have never coughed up so much crap in my life. And it’s not like a so much extra because you are sick. This is moving plugs. I can feel them in my chest when they move. I have had a large one for 3 or 4 days in my airway and its been causing me a great deal of grief. My muscles ache, omg do they ache. But I had to quit taking my pain med because it was stopping me from being able to cough as hard as I needed to cough them out. So I’m pretty miserable. But I feel good. I have lots of energy. It’s a shame I’m too winded to get up….

In the midst of typing, I had to stop and cough. I think I got it up. I haven’t been able to take a deep breath in days. I’ve been clearing a lot of them. I have transplant clinic next week so we will see how things go.
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3 week mark: Well where to start? I hope this isn’t all over the place. I’m gonna post some stuff and I really want brainstorming ideas. I think I have benefited from Indrepta, but I think it needs some tweeking.

Overall my energy is better. My pain is better. It has been. A bit of a roller coaster lungwise though. I feel lots of junk moving around in my chest. Its annoying because its really hard to get out. It has knocked loose some really thick stuff. My sputum has been bright yellow which is different than my normal brown funk. I ended up in the ER from my asthma and when they performed a chest xray they said it was clear from acute infection. However everyone could hear all the stuff moving. I am slowly getting it up. It is just work. I am currently doing my vest 2-3 times per day for 45 minutes each time. I am also using my percussor often. Currently I am doing albuteral, atrovent, and pulmicort as neb treatments. I am also doing NAC. I do not think I could do the indrepta without the NACs help. But I need something else to make it thinner. I’ve thought about upping NAC or adding pulmozyme. What else could be done to get the gunk out? I know I’m not sick because of energy and good appetite.

Other things I notice : I like Indrepta B over A. I have no idea why, but I feel like I feel better on B days than A days.

My gtube has been irritated and I have been having a lot of issues regulating my enzymes/stomach. Probiotics helps.

I do feel like I am breathing deeper. I am moving around without oxygen a lot more now.

Please ask any specific questions. I am sure I haven’t covered everything. I’ve been taking alot of notes.

Oh hydrate. I feel very dry. I have upped my water intake considerably. Sodium was low at the doctor appointment, which everyone has found to be weird.

I have clinic with pfts, xray, ctscan all next week.
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6 weeks in: I had clinic last week. My fev1 went up 6%, my weight was up 5 pounds too. Overall good appointment. I started a blog to track my progress.

Still feeling good. I’ve been tired the last few days though. Everyone in my house has been fighting off the crud. I have no symptoms besides feeling a little tired and achey.

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