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Acapella, Flutter, Vest, or Manual CPT

Vest while WorkingLet’s get some community feedback going for the masses with this topic. It’s something we’re all familiar with unless your mutation rocks and your lungs are pristine without this much treatment. You are welcome here, anyway, but you are a rarity.

I’ve had all four of these in my years. About 13 years of manual chest physiotherapy, a couple of years trying Flutter in the car on the way to school functions, years of non-compliance with the very old Hill-Rom Vest that never stayed turned on because of that stupid foot pedal, and now a new inCourage Vest and Acapella.

Here are my thoughts and results from each:

  • Manual CPT – In my opinion, this is THE best method for airway clearance when done properly. The downsides are the obvious space/time requirement, as well as a willing second party unless you’re somehow able to do it yourself. You can’t help but cough if you have anything in a particular lobe that needs to come out. If I had unlimited time and resources, I’d opt to have this as my treatment, but I have a life/job, and so does Beautiful. It just wouldn’t work for us.
  • Flutter – I’d rank this as the second best. I was able to get the percussion sensation longer with Flutter than Acapella, so I think it did more, and I seem to remember it being a stronger feeling, even though the Acapella is adjustable. It’s so small, it’s ridiculous, not to mention it only being 3 parts and the easiest thing in our arsenal to keep sterile.
  • Vest – Not all vests are created equal. I couldn’t be happier with my inCourage Vest system that I got last August, but it serves a purpose, but not the one I thought. I don’t go crazy coughing with it, but it does a fantastic job alleviating any wheezing I have at the time. It’s quite expensive, even with insurance (our durable medical equipment co-pay was still $1200, and I have an excellent HMO package. Is it worth it to me? Absolutely.
  • Acapella – I have 2 of them that I bought out of pocket because my HMO wouldn’t pay for the device. I was keeping one in the car for my way to school if I had a wheeze and I keep one by my Vest. I find using both the Flutter and Acapella exhausting to use because of the deep breathing and strenuous spasms that follow, but I know they work.

Which method(s) is/are your preference for airway clearance?

Fatboy Has Lost His Appetite

Boy, Am I HungryHe wants it back, really badly. Even Megace isn’t helping much because it mainly helps me not feel full while I’m eating, but the problem is that I haven’t even been hungry for quite a while – pretty much since my blockage. I really have no idea what’s up. Beautiful is concerned that I’m hovering just below 130lbs right now, but that I look a lot thinner. I think the look has to do with it not being fresh weight any more, but who knows? I can’t tell reverse changes like that, only gains now. I’ll see the gain when it comes, so let’s figure out how to eat again. I have 3 ideas at this point, and this is just speculation:

  • The blockage really has done a number on me and makes me feel satisfied on less because my stomach shrank from a day of not eating and the subsequent cramps I still have after eating indicates that some things are still not back to normal.
  • I got off my t-shot schedule by 2 days last weekend and it’s a known factor in appetite. I’m back on schedule this weekend, so we’ll see if my appetite returns as a possible indicator of its need to stay on schedule.
  • Our medical/insurance/financial trifecta has depressed my appetite. It’s hard to think about food when you’re thinking about insurance issues for other people on other plans and trying to make sure that everyone gets the attention they need and that everyone gets paid. I flip/flop between being down and working like a beast until late into the morning and doing myself no good that way.

Any ideas or suggestions about what works for you (or if you happen to have a pretty good idea about which of these it is) would be especially welcome. I have clinic in exactly 2 weeks and I have to be Fatboy, not Mediumboy.

The Coolest Medical Procedure I’ve Ever Had

This entry is part 4 of 4 in the series The History of Fatboy

Surgical TrayWe, as CFers, are no strangers to uncomfortable, if not horrible, medical procedures. Enemas, enteroclysis, PICC lines, central ports, and a slew of sinus surgeries. Today, I get to share with you the coolest procedure I’ve ever had done to me.

I can remember having issues with my meconium ileus scar getting infected since the 7th grade or so. Over on the left side was a dot of a hole on each side of the scar, as if I’d had my belly pierced. I often wondered if I could thread a paperclip from one side to the other. Every month or two, I’d notice it start to turn red, puff out, and then become a pussy mess that I could squeeze clean over the course of a few days. It happened without fail.

After this had gone on for years (I think I was 18 or 19), I finally decided I’d had enough of this and decided it warranted going to my primary care doctor to look at it. I was still going to a pediatric doctor since I hadn’t transitioned both my CF and non-CF care to adult services, so this may have been one of the coolest thing she had ever done.

[Read more…]

3 Things I’ve Learned About Life Because of CF

Colored GlassesHaving cystic fibrosis makes you a different breed one way or another. There are stronger CFers and  there are weak, defeated CFers, but none of us are “normal,” no matter how hard we try. We are automatically changed, forged by CF into something different than who we would be without it.

A favorite topic among CFers is whether or not you got a genetic a re-do on life if you’d take it because of the different person you’d be without CF. I’d give up CF in a heartbeat and take my chances with my body working correctly and see what kind of person I’d be. A few things would be different, but not too many, I don’t think. One of the things is perspective. Here are some things I’ve learned about life because I have CF.

  1. Life is short: Yeah, yeah. That’s cliché, but “normal” people say that. We have CF and have been given a different life expectancy number from the time we can remember. What we do with that expectation and how we let it affect us is what makes us different. [Read more…]