Last week, my Doctor made a special trip to see me at the U. He is a little too popular for his own good so his appointments were all filled up resulting in Doctor Day on a different day of the week. I stayed home for my regular Wed evening outing the night before to finish putting "my house in order." Well, I have a darling lady who helps me put my actual house in order when I call her in a panic. I mean more like the dishes done, laundry caught up, groceries bought, bills paid, library books returned, and that sort of thing. Basically, the list of things that might cause my husband stress if I should go on an unexpected "vacation."
As it turns out, I managed to avoid "vacation" in the big house and IVs. It was a double celebration day and reminds me why I don't make predictions about Doctor Day. When my husband saw my scores, he said, "Did it hurt when you blew that much?" Some of you have noticed that I never really reveal my pulmonary function (PFT) test scores here. There are two reasons for that mainly. One is that they are a number and one reflection of how things are or aren't going. The other is that I like my Mom to sleep at night so I am very specific about not telling her or anyone who might tell her. She is a smart chic so she can likely figure it out but the numbers will keep you up in the night if you think about them too long.
Lately, I have had a couple of good questions that remind me that a cheat sheet might be helpful. The big house is in deed the hospital. While it is good to go there when you need to, I will go to great lengths to avoid living there for any length of time. The junk or "achies" as my daughter calls them is the stuff that is stuck in my lungs and does not want to come out. The junk is always there is one form or another but sometimes it feels thicker to me or is harder to breath depending on the day. It also contributes to the fatigue and the people who hand out handicap parking writing me off with a six year pass to park wherever I please.
The "bugs" are another term for a variety of germs. While these can be the ordinary bugs that my daughter encounters at school and tries very hard not to share with her mama, they are also the big bugs. I have the most trouble when the bugs gang up on me. For example, I can have pseudomonas and staph at the same time which results in needs of treating two different bugs with two different regiments of antibiotics. In my experience, this has resulted in the big house. The more common scenario on a day to day basis is pseudomonas in various forms. At this time, I have three different strains of it which means that what med might kill one strain will not treat the other two and vice versa. I think a normal person in this situation would just lie down on the couch and take one for the team. With CF, you kind of have to work your life in between the germs or in spite of them.
One of my friends asked recently why my left lung tends to give me more trouble. She thought it would be the same on both sides. I have tried to come up with a way to describe this that isn't just gross but haven't had any luck. So, consider yourself warned. If you take two garbage bags and turn them upside down to resemble lungs, you can pour two gallons of green slime over the top of the bags and inside if you want to get technical. (If you want to know how to make green slime, my daughter can give you the recipe). If you pour it over both bags/lungs, you will see that the slime doesn't spread evenly or stick to each side the same. You will also likely see the bag changes colors where the slime was but moved on. It is similar with my lungs. One type of bug might be living on the top right side. One might be in both. One could be in the bottom left and so on. The other factor is the scarring in my lungs which results from damage done by current and prior infections. I tend to have the most trouble moving the stuff in my lower left lung which is why my husband hits it for me in my yoga room.
So, what does that mean? I am sick on any given day. It is really more of a question of how sick I am today. I love my vest three times a day to help the junk move around and typically have more energy right after doing a vest. If I am really sick, I do it four times a day. You can usually tell if I am feeling sluggish because I will opt out of the things that are optional. I don't typically plan a lot on Monday to catch up after the weekend and have been finding myself tired again by Wednesday. When I was working my day job, I had altered my schedule to work longer days on Mon, Tue, Thur, and Fri. This gave my body a chance to catch up a little bit mid week. Now, I find the Diet Coke helps the fatigue but that has its downsides too.
Well, that is likely much more information that anyone really wanted but you get the idea. If you stay tuned, more information is coming about the CF Walk and shirt orders for this year. Our plan is to have a team called Love Your Lungs that walks across the country at various sites. I need to firm up a few details. We plan to walk around one of the local lakes but folks are welcome to walk at any location. My daughter wants me to warn you that it will probably be long and there might be bugs. She has agreed to be our honorary team leader. She waved her magic wand and made me healthy last week. Wouldn't it be crazy if that worked?
Blessings,
Cindy
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