Monday, March 10, 2014

Plugging Along

You ever know you need to do something, but you just can't muster up the courage to do it? Yeah, that is how I felt about calling the doctor about my CT scan results. I kept telling myself I needed a few more days to mentally prepare for the news. If he told me my lungs were extremely scarred and I had no chance of regaining my lost lung function I wasn't sure I was ready to hear it. I had to roll the idea around my head a little more, process, decide how I would deal with the worst case scenario. Everyone kept asking me if I called, if I got the news and I was embarrassed to say, no over and over again. I guess I am slow to process, but I have found over the years that it may take me a little longer, but I can find my peace and move on without dwelling on the past. Had I called the next day, regardless of the news, I would not have processed and would have unsettled feeling even if the news was positive. Does that even make sense? Who knows, but it seems to work for me!

So to the results. I finally got to a point where I felt at peace with whatever news came my way and called my CF nurse. She was out of town. Figures. The doctor called a few days later while I was out jogging (woohoo!) which meant I missed his call (boo), but luckily he left a message. He started with, "I have good news and I have bad news." Great. He said the good news is...(except I really wanted the bad news first so now I was getting a little nervous and wanted him to hurry up and talk faster), "there is no infection into your lung tissue or pneumonia." Considering I really didn't even consider this an option (based on my symptoms) I didn't really find the news all that good which made me a even more nervous for the bad news.

"The bad news is....well maybe you will consider it good news (then why oh why did you call it cad news?) you seem to have some severe plugging which unlike scarring is reversible". Tears of joy (and I am not an emotional person so you know I felt relieved!!) My little K came running over and said, "Mama hug" while throwing her little arms around my body in a big bear hug. She always knows what I need when I need it. I was told to up my physio and exercise and to try to move out as much crap as possible. He didn't say crap, but whatevs.

Although that was the best case scenario in my head and I was eternally grateful for the news here is what kinda threw me off. I have been 100% compliant for years. YEARS! So how is it all of the sudden my lungs are filling up with so much mucus they are plugging my airways and causing my PFTs to suffer. I kinda figured if you did everything the doctor said your lungs would remain relatively clear. Sure, infections and scarring is inevitable and happens no matter how hard you try to avoid it, but I didn't really think I would fill up with so much mucus that I couldn't breath by doing everything I am told. I have a few theories which I will post once I figure them all out (remember I am slow to process) just in case it may help someone else that finds themselves in a similar position. Hindsight is 20/20 so maybe I can use my hindsight to prevent you from filling up with green slime.

If you have any suggestions for moving plugs I would LOVE to hear them. I am currently:
Vesting 2 hours a day
Using flutter 2x/day
Using a percussor about 30 min a day
Running 5x/week
Pulmozyme 2x/day
HTS 7% 2x/day
Inhaling L-Glutathione 2x/day

8 comments:

  1. Very happy about the good news and that your nerve wracking wait is over. Celebrate! And keep up the good work.

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    1. Thanks :) I am so happy to know what is finally wrong and I can stop worrying. I need to learn patients because now that I know what is wrong I just want it fixed...now!

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  2. This is weird but sometimes drinking something really cold helps them move for me. Totally bizarre! Plugs are one of my biggest CF frustrations. Are you culturing any new bacteria or fungi? The thing that really started me down the plugged up route was getting steno and ABPA.

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    1. I only culture staph and psuedo which is the same as always (since diagnosis) which is why the severe plugging is super bizarre. I think it happened over the past year, but still bizarre to go 28 years without having a major issue with plugs to getting severe plugging in a matter of a year. That is CF, I guess. Always changing up the game. I am going to try the really cold drink. I know I need to stay super hydrated so it can't hurt!! Thanks for the tip.

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  3. Glad to hear that your news is positive in that you are able to do something about it. I have found that what works best for me is using the autogenic drainage technique. I was taught it by the physio when I was in London and pregnant with my daughter and I find it is the most effective if I have a stubborn bit of junk down there that I can't get out any other way. I normally do it whenever I'm in the shower.
    Looking forward to hearing other peoples ideas.

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    1. I need to learn that technique. I have asked my RT about it, but he doesn't know how to do it :/ I will have to see if my Pulmo has any idea how to do it because everyone that does it loves it!

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  4. Love this Blog post! Good news about not being permanent damage, I do CPT in the shower, but hardly can ever bring up anything. Its frustrating...

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    1. I bring up about 2 dixie cups worth a day!! It is hard to believe with all I bring up there is still copious amounts still in my lungs!

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