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
Showing posts with label CT scan. Show all posts
Showing posts with label CT scan. Show all posts
Monday, March 10, 2014
Saturday, February 22, 2014
CT Scan
I got a CT scan today because my last round of IVs didn't really improve my PFTs like we had hoped. I still don't feel like I have an infection so we decided to do a little investigating. My last CT was 10 years ago so it seemed an appropriate time to try again. Even though it has been a while since my last CT I remember it being a super simple procedure. I assumed I would be in and out in about 30 minutes so I came without a book or anything to do. Did I mention this CT took place at the hospital? Has anything ever been as simple as in and out at the hospital? Seriously, what was I thinking??
It is a Saturday so for some reason I figure they won't be busy. As I approach the waiting room my suspicions seem to be proving true. The receptionist looks up upon my arrival and quickly shoves her book aside. She apologizes for reading and explains that it has been so dead all day that there really is nothing left to do. All I can think is, awesome I will have this done in no time! So I sit and wait...and wait...and wait. I have no internet in this part of the hospital so I fiddle on my phone and clean out my old contacts (seriously, who are some of these people!?), delete old pics, and change my phone wall paper. I then clean out my purse. Still waiting...I tried to nap, but failed to do so sitting up. I asked the receptionist how much longer she thought the wait would be (I mean it has been dead all day, right?). She went in the back to check and told me they had one patient ahead of me and it would be soon.
(fast forward through a bunch more waiting and the receptionist checking one more time)
They finally call me back and at this point I am annoyed. I waited 50 minutes in a completely empty waiting room! The nurse took me back and was rather rude which made me more annoyed. To make matters worse when I was finally brought back I was horrified that I still wasn't actually getting my CT scan. The nurse pointed to a chair in the hall and said it would be a few minutes. Sigh!
As I am sitting there annoyed that everything at this darn hospital seems to take hours the door to the room opens. And finally, someone is being pushed out of the CT room in a hospital bed. As the nurses push the bed around the door opening I see the body of a very very young unconscious child with no hair on half of her head, no older than my own daughter waiting at home for me. A few tears came to my eyes and I thought how selfish I was for being annoyed that my appointment was pushed back. I realized how lucky I am to have a perfectly healthy and vibrant child running and playing and being silly at home with her daddy. How lucky I am that I am sitting here waiting for a scan for me and not for my little Kay. How lucky I am that my child doesn't know what it means to be sick.
It is a Saturday so for some reason I figure they won't be busy. As I approach the waiting room my suspicions seem to be proving true. The receptionist looks up upon my arrival and quickly shoves her book aside. She apologizes for reading and explains that it has been so dead all day that there really is nothing left to do. All I can think is, awesome I will have this done in no time! So I sit and wait...and wait...and wait. I have no internet in this part of the hospital so I fiddle on my phone and clean out my old contacts (seriously, who are some of these people!?), delete old pics, and change my phone wall paper. I then clean out my purse. Still waiting...I tried to nap, but failed to do so sitting up. I asked the receptionist how much longer she thought the wait would be (I mean it has been dead all day, right?). She went in the back to check and told me they had one patient ahead of me and it would be soon.
(fast forward through a bunch more waiting and the receptionist checking one more time)
They finally call me back and at this point I am annoyed. I waited 50 minutes in a completely empty waiting room! The nurse took me back and was rather rude which made me more annoyed. To make matters worse when I was finally brought back I was horrified that I still wasn't actually getting my CT scan. The nurse pointed to a chair in the hall and said it would be a few minutes. Sigh!
As I am sitting there annoyed that everything at this darn hospital seems to take hours the door to the room opens. And finally, someone is being pushed out of the CT room in a hospital bed. As the nurses push the bed around the door opening I see the body of a very very young unconscious child with no hair on half of her head, no older than my own daughter waiting at home for me. A few tears came to my eyes and I thought how selfish I was for being annoyed that my appointment was pushed back. I realized how lucky I am to have a perfectly healthy and vibrant child running and playing and being silly at home with her daddy. How lucky I am that I am sitting here waiting for a scan for me and not for my little Kay. How lucky I am that my child doesn't know what it means to be sick.
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