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Fatboy vs the TSA – Traveling with Medical Stuff

Pills

This was the EASY part of packing

We were stressing over traveling up to Ohio this weekend with all of my medicine and medical supplies that included my $11,000 Vest and 4 days of Cayston and Pulmozyme, along with all of my other “less expensive” meds. Of course, we were also n more possible conflict with the needles needed to mix and draw out my colistin from its vials, so I was expecting a nightmare experience.

The morning before, I read up on everything on the Southwest site and the TSA site about traveling with medical disabilities and medical supplies. It seemed like it was all in our favor to be a breeze, so long as we declared early on that we were going to be a pain in the butt. I declared so early, the guy seemed annoyed that I mentioned that I had special medical equipment with me and the second guy said to just get in the line with everyone else.

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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?

Packing for Vacation Is Huge with Cystic Fibrosis

PackingWe are off to the Smoky Mountains at 6am Saturday!

Preparation started days ago with the clothing and suitcase items, but now Beautiful is sitting at the table filling my weekly pill container for next week after dumping tomorrow’s meds on the counter for me to take in the morning. We’ve got a box of snacks for Day 1 of driving, Day 2 of driving, and a stash to keep safe for our drive back home so we don’t eat it all while we’re there. I think I’m supposed to down about 20,000 calories on Day 1 of driving by the looks of what we’ve got in there!

Since eating is a full-time job for me, we went over the menu for the week since there is a full kitchen and are taking turns making meals. We figured out what things we needed to supplement with more food for me without bothering everyone else. Wouldn’t want the whole family coming home rolly-polly now, would we? Some days, it was an omelet after breakfast, others, it was a snack or a Stouffer’s lasasgna. I’ll be taking Megase all week, so the eating extra really shouldn’t be a problem, and since my biggest fear is losing weight, we are taking care of that. If all goes well, I’ll be fat and happy when we get back next weekend.

We’ve packed the Vest, put nebulizer vials in baggies for either the box or  cooler, filled the pill container, gathered my enzymes, set out my inhalers, and put my eFlows on the armrest of the couch instead of properly back in their place in the basket. I gathered any possible narcotics I might need, as well as my Ambien for a really good night’s sleep every night.

Beautiful was really surprised that I wanted to bring my Vest along because of my strong determination to be normal, but it makes such a difference now that I’ve been doing it, I don’t want to risk having a week-long wheeze just because we left it here. It comes with a nice travel roller for the airports and everything, even though we’re driving. Where I’ll do it or how we’ll work out when I do it is still up in the air, but we’re bringing it.

Monday will be a regular installment of “Things CFers Do” followed by the week’s activities if no one minds non-CF articles. Speak now or for the rest of the week, hold your peace.

What, Exactly, Is Cystic Fibrosis?

How does cystic fibrosis do what it does?

I’ll admit it, we either have to stop and think of the logic of what the biological process is or go to Wikipedia and look it up to refresh our memory. I’d rather have the information here at my fingertips, so here goes a scientific/layman combination attempt at explaining what is wrong with CFers’ bodies.

CF LungsCystic fibrosis transmembrane conductance regulator – CFTR

What the heck, Fatboy? I know, I’ll explain this – don’t worry. Simply stated, this is a protein on the a gene in chromosome 7 in people that regulates the balance and flow of water and sodium chloride between cell membranes to keep a consistent ratio of water in one’s cells. In cystic fibrosis, particularly in the mutation referred to as ΔF508, it just doesn’t work. I happen to have a double ΔF508 mutation (one gene from each parent) that makes my form of CF the “most common” by percentages of mutations known of the CFTR gene.

That means thick, sticky mucus and other bodily fluids

From an early age, even inutero, this gene can wreak havoc on the body, depending on the mutation. Some CFers go decades without diagnosis because they generally function just fine with their mutation. Others are on the lung transplant list by the age of 5. I happened to be born with exploded intestines, which is a common, obvious diagnosis of CF in infants called meconium ileus and have a huge scar running from side to side across my gut.

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