I haven’t written in a while, mostly because I was sick and I don’t write how I am doing when I truly do not know how I am doing.
I developed that rotten cold that was really a flu two days after I got home from my trip. Two days in I started one oral antibiotic and another couple days in I started another. My cough got deep and ugly.
I was fighting a virus and bacterial infection. I needed 8-10 hours of sleep every night otherwise I just could not function. This flu went up and down, up and down, and after almost 2 weeks in I called my MD and they put me on Tamiflu even though it is more affective in the first 48 hours. During this time I called in sick twice to work and a couple days I went home a 1-2 hours early. Not too bad considering.
I then decided to call my CF clinic in MN to see if they had a more affective protocol – and yes, they did. I also found out I was mixing two of my drugs incorrectly. Granted, I was not educated prior to that so how would I know? Two that I was mixing actually created bronchospasms. I just thought it was my lungs. I rectified that immediately.
They also recommended to do my mucomyst mixed with albuterol, hypertonic saline, and then Tobi for each treatment. That is 1.5 hrs. 2x/day. I did that roughly for the next 3 weeks. And then, there standard of care is 3 weeks of oral antibiotic vs 2 weeks as my MD prescribed here. They suggested to ask for them to extend for a week, which I did and which they did.
To offset the 1.5 hrs. each morning and each evening, I did one of the nebulizers in my car with my handy dandy one pound air compressor. Disclosure: I think 2 times in the morning I ran out of time to do the mucomyst and hypertonic completely. I shortened each neb treatment to 1/3 of the total time frame. Some days, you just cannot do it all.
As the weeks progressed my cough seemed to be friendlier, my energy was getting better, and then the big day came – can my body sustain when my antibiotics are through?
It is a plus when I turn the corner and I have 2 days in the row where I see an upswing. The 2 days are critical cause if it was one up and then one down, then I am truly not getting better. My body would still be fighting and my white blood count would be high and trying to do their best.
The 2 days turned into 3, 4, and upwards. Then I didn’t clunk-out when my antibiotics stopped, and now I have actually gained a couple pounds and I have started to work out again. I am feeling stronger.
I have continued to do my mucomyst and hypertonic twice a day because it could be the key. I keep my portable air compressor in the car and do it in the morning on the way to work and after work. It takes 3-4 minutes to set up, so I do my best with some under my breath swearing that I should have left 2 minutes earlier at times – but like I said, I do my best.
Two key factors –
One, the new drug – how much did that help? Unknown to the exact percentage.
Two, the intense nebulizers and treatments.
These two factors happened all at once, so I do not have a controlled study to know exactly what the key was. However, honestly – as I go forward I will do exactly what my MN clinic told me and I will not stop the Orkambi as long as my body allows me to continue. So, it probably does not matter to the exact percentage what helped more, just more of a curiosity than anything.
Goal: 80-100 grams of fat and 2,000 calories a day. Gain 4-5 pounds. Work-out and create muscle mass along the way.
I am always thankful for each and every day. And I always hope the light continues inside and carries me through –