Well my 2018 has been shitty so far, literal and figuratively speaking. Not that you cared to know that. I got that virus around Christmas weekend and it seems to have found a happy home in my body. I have been super short of breath just walking and even sitting therefore I have been using my oxygen pretty much 24/7, unless it doesn’t reach where I’m going in the house. Continue reading
As I was walking the dogs around the block today with my oxygen on my back I got to thinking about all the things I miss being able to do. With progression of CF, your independence slowly gets taken away. It is a major mind battle and the depression takes a hit when you think about all the things that are “taken away” from you. Continue reading
This is what a $500 battery for my POC (portable oxygen concentrator) looks like. Yep $500!!!! I have to have 2 of these for the trip to Hawaii. Per FAA regulations, you have to have 150% of battery life compared to your flight/layover time. I had to be approved by Delta to fly with my oxygen. Then they dropped the bomb that I needed 2 double batteries (a total of $1,000) OR a double battery and 2 single batteries ($500 + ($325×2) = $1,150). One double battery gives me about 8-8.5 hours at 2 liters. One single battery (which is what came with my POC) gives about 4-4.5 hours of 2 liters. Thank you to everyone who donated to the lung fund for allowing us the means to buy $1,000 worth of freaking batteries.
If you would like to donate we would greatly appreciated it.
Thank you to you all for all of your love and support!!
Until next time….
Today is day 25 of IV Zerbaxa, counting from day one in the hospital. I was switched to oral Levaquin from IV when I was discharged from the hospital 14 days ago. I tolerate IV Levaquin way better than oral Levaquin. Levaquin makes me super nauseous therefore I am nauseous most of the time. My stomach is super sensitive right now so I’m trying to eat lightly. I’m trying to eat things I ‘think’ will be smooth on my stomach but it doesn’t seem to be working all that well. haha Continue reading
Today was a day that I have not looked forward to happening in my journey in life with CF. The day that oxygen was delivered to my house for 24/7 use or even only night time use. I have always thought that when this day happened it meant “I was getting sicker” and that my life was on a downward spiral of CF progression. In my life there have always been milestones that have signified different steps of CF progression to me. Not everyone thinks the same as I do, this is just me. Continue reading
After 16 days in lock up I am home. It was a long 16 days. The first 10 or so days of my stay I was sick enough that I didn’t care that I was there. Yes of course I wanted to be with my family at home but I knew I needed to be there to get better. On day 7 I had a bronch which was followed by days of a lot of pain and major tightness and wheezing in my airways. So needless to say my asthma went crazy and I had to put up with it and it was NO fun! It took upping prednisone to 80mg per day (40mg in the AM and 40mg in the PM) to get the tightness and wheezing to lessen to a tolerable state. Continue reading
CF doc came in around 2pm (smart man coming in after noon). I always feel better when they come in. I made sure that they have final say on any and all things that are changed and/or added for my treatment while in here because I see so many different doctors while inpatient. I am happy to report that they do indeed have final say. He told me not to worry about that. Continue reading