Wednesday, August 8, 2012

Update from the Hole - Vol. 376

Hey everyone! I thought I'd give everyone a little update from here in the Hole. I have no idea why it's volume 376, but it's the first number that came to mind.

  • 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!


Comments (16)

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Good stuff, Ronnie. Fight on.
1 reply · active 660 weeks ago
Always will my friend.
When you say a longer infusion time, how long is the infusion time?
1 reply · active 660 weeks ago
My vancomycin is run over 2.5 hours in my meropenem is run over 3 hours. The only issue is that I'm basically strapped to an IV pole all day, but at the medicine works better, I'll take it!
Way to take inititative my man! I 'm glad things are improving while you are in the hole!!! No one else knows your body like YOU. I just had my clinic appointment Monday and seems like FEV 1's in the 70s are contagious. If you want the entire scoop on the clinic check it out on my blog.
1 reply · active 660 weeks ago
I will be sure to check it out!
Glad you're nipping it in the bud before it gets too bad! That's always my philosophy too!!
1 reply · active 660 weeks ago
And that my friend is why you are a booty kicker!!
what will they do when a picc line is not an option anymore? That bothers me - b/c Melanie has had 6 picc lines over the past 2 years - if she keeps this up - then at age 16 or 18 they will tell her no more picc lines?!?!??!
1 reply · active 660 weeks ago
It all depends on her body and the size of her veins. Be sure they continue using pediatric PICCs no matter how big she gets. And when I run out of the PICC option, then port it is.
If they have such a hard time with your PICC's, why haven't you gotten a port yet? I'm just curious. I'm only 20 and have only had maybe a total of 12 PICC's before the doc and I wanted to go for a port placement. They started having difficulties around the 4th PICC and that's when they started sedating me and sending me down to IR. The last PICC that I had took them 2.5 hours (even in IR) to place, believe it or not.
1 reply · active 660 weeks ago
The best answer is that I just simply don't want one. Until a PICC line negatively impacts my family or health, I'll roll with them.
Ronnie!
My friend, your in there again! YOu know I hope you are feeling better. But, be cautious about how often you use those Iv's. You don't want to become antibiotic resistant to every iv med. Have you thought about going on Cayston? That has been a life saver for me. Within days of taking it, my mucus turns from green to clear, and I feel so much better. One month on one month off. On the PICC note, I am like you where until they can't place it anymore, then I will use a port. The feeling of the PICC in my arm drives me nuts. I always want it out as soon as I get done with meds. Postive note my pft's were great. Fev1 76, on cayston. This is my second cycle on cayston. I will say one negative is that your joints ache a lot from the pseudomonis breaking down. Other than that I like it. I ran/walked my first 5k in April this year. I placed in the middle. :) I was glad not to place last. Hope all gets better. Take care.
1 reply · active 660 weeks ago
I cycle Cayston and Gentamicin and it seems to work well for me. Great job on your 5k!!
Glad to hear your numbers are up so soon.
1 reply · active 660 weeks ago

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