Friday, January 8, 2016

Update on my Lungs

Hit a Snag:

Well, unfortunately we cancelled my doc's appointment for today. So I do not have an update on my lung function for you. I know, sounds crazy to cancel right? Actually, it was the smart thing to do. Considering our plan was for me to take prednisone for 6-7 days and do a Collistin Nebulizer treatment 3 x a day didn't work out too well. I got the prednisone filled right away, I had the pharmacy and Doc office receive and set up my new nebulizer on Monday/ Tuesday. However, the insurance needed a prior authorization and  they have a standard 15 days to decide if I get the new nebulizer. Since I'm already taking Cayston this month (another antibiotic nebulizer) they will prolly (yes, I always say & type prolly) deny it and we will have to fight it, etc.

This is why it's hard to get lung function back after being sick. It can take so long to get the meds and treatments that we have twice as much work once we do, and sometimes its already permanently damaged our lungs.

For example: I know I have blebs and scar tissue damage in my lungs. I've lost around 40% of lung function (permanently). I'd like to try to keep my lung function as close to 60% as possible. So needless to say, when I saw the 36% at my last clinic I freaked out a bit.  Since I can't get my new nebulizer (for who knows how long)... I'm not feeling like I'm in the best place healthwise, BUT since starting the prednisone it has helped with my energy and food intake, which in turn helps me work out, keep up energy, sleep better, etc. So my lungs breathing isn't much better, but overall I think my numbers may have still gone up a few points already from everything else. Which is why we decided to hold off on the appointment. I'm not worse, don't feel I quite need IVs yet, and feel a teeny tiny bit better. So we want to see if I can get Collistin next week and have a follow up a few days after that...

I'm HOPING my insurance (which I have LOVED so far)... (See this past post here on facebook) doesn't let me down this time:

Yay, Whoohoo! Look what arrived today! I love Andrew's Insurance/Company! RANT WORTH READING: I went 9 months without...
Posted by Cheriz: My Life with Cystic Fibrosis on Friday, October 30, 2015

 Yes, I proclaimed my love for them....please don't let me down now! But, we will see... I will keep everyone updated. I'm supposed to call Monday and keep checking the status.

I've kept all my clinic results in an excel sheet since 2010, so I can see how I progress over time. As you can see I like to keep it between 55-60%. The big dip in January 2015, was that month I was in the hospital, did IVs for 3 weeks, followed by extra nebs for another month.

Since last friday's appointment I have : tried to walk more (cardio type) reaching average 3,500 steps a day, doing 3 vest treatments, with all 9 nebulizers. While eating at least 3,000 calories per day (trying for 4,000) and calorie counting in & out via Fitbit. Which may be helping me keep weight on too...

So hopefully these steps I am taking will help me beat this current state of lung function and I can once again rise and say "welcome to the 60s"! (shoutout to my "Hairspray castmates/friends")

 I hope everyone had a great New Years & I will keep you all updated on my CF Faceook page too!

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