Trikafta: Day 6- No Pain No Gain
Ok so the sinus pain is diabolical. Even on massive pain meds it’s still nauseating. Doc says it’s either the mucocele sitting on optic nerve is expanding or contracting and both are super painful. I’m hoping it’s contracting and maybe disappears. Ha not likely. It may shrink…maybe. So other than being sidelined with this pain, […]
MoreTrikafta: day 5- Ups and downs
So my last night was exhausting, Cali had some stomach issues and she wouldn’t settle down. She would hop off the bed, pace around the house and then come and put her face in mine. This usually means her anal glands are full. So from 3 am – 7 am we tried expressing the glands […]
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Trikafta Day 3: I am living in an alternate universe.
I feel like I was blind and now I can see. It’s the most meaningful pivot of my life. It’s astounding, astonishing, amazing, beautiful, shocking, unbelievable, overwhelming, motivating, mind-boggling, staggering, startling, unexpected, awesome, fascinating, marvellous, and truly incredible. I’m running out of words to describe this shift in my health. I did about a weeks […]
MoreLast 24 Hours…
So, last night before bed I headed upstairs for a shower and did not use my oxygen. I had little shortness of breath and recovered quite quickly. It was great. Is this monumental, no. I’ve had good days where I was able to climb one set of stairs pre-trikafta and be ok. It’s been a […]
MoreTrikafta Day 1- Am I Done with being Sick?
Ok so my night was uneventful and that’s ok. I took my morning dose and so far I have not grown a tail or anything like that. About 90 minutes in I had a cough, a cough unlike my normal cough. This cough was easy and it brought up a big chunk of lung junk. […]
More50 Years of Being Sick, Does it End Today?
On Monday evening, October 18, the start of the start of my life will begin…maybe. I am getting access to a miracle drug created for people with cystic fibrosis. It has eradicated the disease from the lives of those with mild disease and it has rescued those with moderate to severe disease. It.is.a.game.changer.100% So by […]
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