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- It took me a few days to get scheduled for PICC line, but after what seemed like forever they finally got me down to IR. I guess scheduling wasn't the issue but making the time to get me on the table was. Because of my extensive history with giving PICC lines placed, having them done bedside by specialty nurse just isn't an option. The 40+ PICCs that have passed through these veins have made the tunnels much narrower. I've been told many times that “this is the last one” but so far, I'm still trucking.
- Both this time and during my last tuneup my CF doctors have bought in to running my antibiotics over a longer period of time. I've got to say, I think it works! Generally, I feel like I was run over by a truck for at least my 1st week. Last stay that feeling only lasted about 2 days while this time it was only present for about 3 to 4. That of course wasn't the reason they decided on longer infusion times, but they found the antibiotics are more effective in killing the bugs. If your CF center isn't on board with this new strategy I would recommend at least bringing it up to them.
- Many people ask why I come into the hospital so often. The most simple answer - I come in when I don't feel awesome and under my own power I can't feel more awesome. I of course could still function on a daily basis, still went to the gym, was still a husband and a father, but I just wasn't performing those activities with as much energy. I know that when that time comes it'll be a matter of a month or two before I'm forced to come in for a hospital stay. Let's just say I'm not a fan of being forced to do anything! Rather, I choose to come in before I deteriorate to that point. I found that if you can beat CF to the punch you're generally better off in the long run
- About 10 days ago at CF clinic I blew a 74 FVC and a 62 FEV1. They repeated PFTs this last Monday and to my surprise they were up. I say this because usually my numbers don't budge after just a week in the Hole and in fact they usually go down. It's often been the case that my numbers don't increase or increase vary slightly over the course of my entire hospital stay. On Monday however my FVC increased to 85 and my FEV1 to 74. I haven't seen those 2 numbers since last November! Not sure how that happened, but I'll take it. With that said, as it relates to being in the hospital, I really don't care what my numbers are. All I care about is that I'm put back into a position that I can kick the crud out of CF on a daily basis. That is the only thing that determines when I come into the hospital and when I leave.
I think those are about the only updates so far. If anything changes all be sure to let you guys know! In the mean time just do one thing for me - DO LIFE!
