I am feeling great. My PFT's, (lung function) which were 55 when I had my clinic visit, a week before being admitted, were up to 78% after a week of IV's. They didn't do them again when I went home, but I went home on strong oral antibiotics for another week, so I am hoping that they maybe even made it back up to 85%. That would be great, because 80% is the highest they have been in a long time. I have an appointment in a couple of weeks, so we'll see what they are then. Chris always tells me that if they are 80% or above, I get to go clothes shopping, so wish me luck!
This hospitalization was interesting,being my first one here in Ohio. The CF center is housed in a Children's hospital (which isn't all that uncommon. Until recently, CF was only a children's disease, as not many people lived to adulthood. Even though that has changed a lot in recent years, a lot of adults are still treated in children's hospitals). That made for some interesting procedures and protocol, such as phones being shut off after 10:00 and a lights out at midnight policy. Instead of drawing blood from your arm, they do everything with a finger poke, and then they squeeze and squeeze your finger until they get enough blood to fill up a vial. Apparently, the kids like it better, but let me tell you, a finger poke is sore for weeks afterward. I finally told them "no more finger pokes! Get someone in here to draw my blood like I am a grown up!" ( I was actually kind of a baby about it...but they really hurt!)
There were some positives, however, as well. For example, when I had to drink Barium dye (which is normally awful and almost makes me puke) for a procedure I had done, I was given the choice of Chocolate or Strawberry flavoring. The chocolate was actually quite delicious. And the bandaids were always very bright and colorful (as opposed to the cotton ball with tape over it that I get at the U of U).
Another thing, that I am not quite sure what to make of, is that people frequently assumed I was young enough to be a teenage patient in the children's hospital. Maybe I should take it as a compliment. I mean, I am getting to the age where looking younger isn't such a bad thing anymore, but I think I would at least like to look mid-twenties maybe. Even if only so they didn't pass judgment when I mentioned that I had a baby.
Another interesting aspect of my stay was the med student who came to see me everyday. Some people shouldn't be allowed to interact with patients! After seeming really long and often offensive at first, her visits soon became one of the highlights of my day, as I couldn't wait to hear what would come out of her mouth next. Here was one of my favorite conversations:
Her : "Do you know why they wanted to do the upper GI scan?"
Me: "They said they just wanted to follow up on some things they found in the ultrasound."
Her: "Okay. Well, let me just say that in medical lingo "follow up" can mean a couple of things. First, it could mean that they didn't get enough information and would like take a more in-depth look. Or, and this tends to happen a lot in a children's hospital, where doctors hate to be the bearer of bad news, it could mean that there is something really wrong and they
don't want to be the one to tell you."
Me: "umm...thanks."
Ya...she was a real gem, bless her heart.
Some of you may know that my little sister, Jenny, is also currently in the hospital (for CF as well). She was pretty sick when she went in, but is finally starting to feel a little better and is hoping to be back home with her hubby and baby for Thanksgiving. We appreciate all your thoughts and prayers in behalf of our family during these past few weeks.
We hope each of you have a a Happy Thanksgiving and that you get to enjoy it with friends, or family, or people you love.
No comments:
Post a Comment