MUGA, GERD, and PFTs
All are written with such ease
But if their meaning you want to know
Then to GOOGLE you must go.

Love Gramps

If you know someone with CF you are guaranteed to experience the potentially awkward situation of being rudely interrupted by a coughing spasm. AKA a string of coughing that does not seem to come to an end, effectively turning one’s face a shade of colours ranging from red to purple, robbing them of air and the ability to speak. Sometimes they last a few seconds, usually they are a few minutes, sometimes they happen rarely and other times they are a common reoccurrence. In any case, they are sometimes scary to an outsider, but usually the person having a coughing spasm is simply annoyed—especially when they occur mid-conversation (don’t they always seem to come on right when you are dying to say something?) or after laughing at something extremely amusing. So to our spasm-less friends, here is some advice on how to react to a coughing spasm:

Do Not:

Ask if I am ok while I am having a coughing spasm…
Although you mean well, quite frankly you will most likely (a- not even get a response because I am too busy coughing or (b- get a nod of ‘yes’ anyway because that is the only thing I am able to do. In fact, it is best to avoid any sort of questioning during this time period.
Side note:If you feel compelled, ask me how I am after. My answer will be “fine” 99.9% of the time though, so you might get bored with my cut and paste answers.

Pat me on the back
Contrary to popular belief, patting me on the back will—if anything—irritate things more. Not only that but it makes me feel infantile—the only thing missing is the burp blanket. Keep in mind I am not choking on a chicken bone or anything (beside my own phlegm… TMI?) and the coughing is already helping me out enough. Save the extra physio for later!

Shove and/or offer me water
One of the first questions I seem to be asked when I have a coughing spasm is “Do you want a glass of water?” to which I croak out “No.” It is kind of difficult to drink a glass of water while you are busy gasping for air. If I were to attempt such a task, it would probably make things much, much worse. However, sometimes a glass of water following a coughing spasm can be nice.

Say Robitussin
You are a tool. Enough said.

Make a joke along the lines of “you should really give up smoking”
I’ve heard it before; fresh material is appreciated.

Do:

Keep Talking
If we were having a conversation, by all means keep it going, even if it means creatively continuing a one-way convo for a short amount of time. Feel free to talk louder and OVER my incessant coughing. Nothing is more irritating than having a coughing spasm hijack a conversation.

Stop Walking
If I start having a coughing spasm while we are walking, stop with me. If people continue to walk, I find myself trying to keep up while I am coughing—this just exhausts me and fuels an even longer spasm.

Offer a Kleenex
For those who carry around kleenex, you are convenient. When you are coughing and need a kleenex (even if it is just to hide your face) it is so hard to search through your purse or pockets for one. Sometimes you really just need it shoved into your hands for you.

So there you have it! Of course not everyone is the same, but I think if we compare notes a lot of us CFers would have a similar list.

To top off this post, here is a pic (not for kiddies):

I have referred to this site a number of times and it is usually successful in answering most questions you have thought of (and never thought of!): Cystic-L

It is actually a free e-mail service/support group for patients, families, friends and health-support workers of PWCF (people with Cystic Fibrosis) that started up in 1994. I used to subscribe to it, but then my inbox got increasingly crowded, so I opted to visit the 'handbook' section of the site instead. I recently found a new appreciation for this website when I clicked on the PFTs Explained For You! link. Amazing how after 22 years, I can still be confused by all the numbers on this test. The Handbook is a little outdated in some sections, but still very useful.

What is a PFT Test?
Here is a great video that shows what it is: PFT Test

The only difference with this one is that I am usually sitting down and my face turns a nice shade of lobster red. I also often see floaters/stars by the time I am done blowing, then I spend a lot of time talking to the respirologist so I can avoid doing it again. By the way, this shows one attempt--depending on how you fair, you will usually do multiple attempts until you have done the absolute best you can do (the average is 3-4 attempts).

I will try to explain more in-depth what a PFT test is later this week, but here is the gist of it:

• A PFT test measures the volume of air in your lungs and how much air you can blow out in one second (there are also many, many other things it tests **See Handbook above:" PFTS Explained for You!"** )
• This is important because it compares the functioning of your lungs to other people your age and size
• It helps determine what state your lungs are in, e.g. if you are stable, sick, need to be referred for a lung-transplant, etc.

I come across quite a few interesting websites and blogs regarding CF from time to time, so I will start sharing them here.

For today, I found this site called Club CF. Sounds oh-so-exclusive, but there is a section for caregivers too. I liked this site because it had a section for all ages (20+, 30+, 40+, etc.) and it had some inspirational stories. It seems a little bare right now, but I think it will catch on.