Tuesday, April 15, 2014

Questions from a Reader: No Silly Questions!

A couple questions sent my way that may help others out there...


Good night, Ronnie, 
I'm really very impressed by your great work about CF community. It's amazing and very inspiring. I wrote that I'm from Russia and now I live in Portugal. Also I've been in German clinic with my child and read a lot on CF forums in England. I spoke with many doctors and physiotherapists everywhere. But I have to say that your community, your actions, your positivity are great and unique.
I'm a little bit shy to ask some questions on the board as the answers seem to be very easy for most of the community here. But still I have some. And I decided to ask you. I'm sorry.
What is PFT? The level of oxigen in the lungs? That the doctors usually measure with a special clip on the finger?What is FEV?When do your doctors prescribe IV? I've read tons of information about that. But still i'm puzzled as all the cases are very individual and it seems that doctors have different point of view. Is there some "rule" or everything depends on the patient/symptoms?Do the doctors prescribe IV as prophylaxis without bacterias and symptoms?Do your doctors prescribe ANY antibiotics as prophylaxis without bacterias or/and symptoms? 

I understand that the questions are too silly and you might not have had any time to answer. I'm sorry.


First, thank you for your kind words. I'm honored to do anything I'm able to do for the community.

I'll answer your questions to the best of my ability...

PFT explained: http://ihavecfsowhat.blogspot.com/2012/03/awesome-pfts.html

The special clip on the finger measures oxygen saturation explained here: http://www.health.harvard.edu/diagnostic-tests/oxygen-saturation-test.htm

FEV1 is covered in the blog I provided above.

There is no rule when prescribing IVs or oral antibiotics. As you get into adulthood, much of it is a team decision. For me, I request IVs when I can no longer sustain my exercise at level consistent with me being healthy. When I was younger, we would base much of it on how I felt and how my PFTs were.

Yes, there are some doctors who are more proactive and will give antibiotics at the first sign of infections. Some will also prescribe with no sign of infection but other symptoms.

I'm on Azithromycin all of the time, it is an oral antibiotic. I also inhale either Cayston or Gentamicin each month and both are antibiotics.

Hope this helps! Let me know if you have any other questions. 

Comments (4)

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Just want to clarify that low dose azithromycin (500 mg 3x/week) is actually most commonly used in CF treatment for its anti-inflammatory properties and not its anti-microbial ones.
3 replies · active 574 weeks ago
Yes Emily, that is a very good point and one I should have made more clear. In fact, some believe that chronic use of azithromycin has lead to an increase in the culture of certain bacterium.
That's right -- And long-term use can increase the chances of developing resistance to azithromycin, which happens to be one of only a few effective treatments for that particular bacteria.
It can also lead to heart problems. Two years ago my resting HR skyrocketed and I attribute it to years on azithromycin. I stopped taking it all together. My HR is little lower now, not much, but I have stopped having really heavy palpitations. There was a study released about a year ago about the heart risks. I'm surprised more CF docs don't take it seriously.

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