Hello

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momtologan

New member
Hello
Just wanted to introduce myself, my name is Karen and my son who is almost 5 was diagnossed with Cystic Fibrosis in August. I have two other children, one w/o cf or a carrier and one w/o cf but a carrier. I have been visiting your site and find it very helpful to read from other people who are dealing with some of the same issues. I hope to find people to chat with to help with some of the questions and struggles I deal with. Thanks for listening.
Karen
 
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anonymous

New member
Welcome aboard Karen, hope Logan is feeling ok. today.

Cheers, Eileen.<img src="i/expressions/sun.gif" border="0">
 
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candigirl

New member
Hi Karen... welcome... I am new as well to this forum... I was diagnosed with cf at birth and then diabetes related cf at 19 I am now 28. I f you have any questions I would be happy to try and answer them for you .Just give me a holler <img src="i/expressions/face-icon-small-smile.gif" border="0"> Candi
 
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65rosessamurai

Guest
Hello, momtologan, and welcome to the forum!

I noticed you had a question regarding what a PFT was, in another spool. I'm sure there are more questions regarding acronyms, and I'll add what I have already collected for you.

PFT= Pulmonary Function Test

For two others that are frequent, Emily (Emily65Roses) told me:
Quote--
FEV1 = forced expiratory volume in 1 second. When you're doing PFTs (not a spirometer, as far as I know, you use giant special PFT machinery hooked up the computers to calculate numbers with the help of a PFT specialist, etc) you suck in all the air you can, and then blow out as fast and as hard as possible. The air you get out in that first second is what the FEV1 is, and that's what most doctors like to keep track of our lung function by. (Interesting way of putting it-- Thanks, Em!)

Another tough one I didn't know either was:
Quote from Emily (Emily65Roses)--
MRSA = Methicillin-Resistant Staphylococcus Aureus
It's particularly resistant, and can be a real b*tch. I (Emily65Roses) haven't cultured it since 01, but they still isolate me in the hospital because of it.

Hopefully this helps out...You know, these questons come up quick, and this forum may actualy need a dictionary of terms for it...?

Emily--hope you don't mind me quoting on you with the descriptions, I couldn't say it any better! (Esp. cause I didn't know how<img src="i/expressions/face-icon-small-happy.gif" border="0">)
 
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momtologan

New member
Hello,
Thanks for anwsering my question. Does everyone with CF get a PFT and if so is this routine or only when you are sick? My son is going into the Hospital fopr the first time on Monday for a brocioscope and for IV Antibiotics. Do you know what I should expect or what questions to ask? He was just diagnossed and is almost 5, he has been sick since he was a baby. He would have one Upper Respitory Infection after another, Sinus infections all the time and always has a cough to the point that he is almost throwing up. Thanks for taking the time to talk.
Karen<img src="i/expressions/heart.gif" border="0">
 
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Alyssa

New member
Yes, everyone usually gets PFT's done at each clinic visit -- which is usually every three months -- sooner if you have problems in between.

I'm kinda surprised they haven't already done at least one PFT on him -- are you attending a CFF accredited clinic/hospital?
 
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momtologan

New member
Yes, we go to John Hopkins Hospital in Baltimore. He has had two clinic visits so far since being diagnossed in August. He was just fitted for The Vest and is doing well with that. He goes into the Hospital this Monday for about a week. Is that something that I should ask to have done, how will that exactly help him? Does it tell how well his lungs are? I saw someone else on here said there lung function is low ( 20% ) is that normal for people with CF? When they did a Cat Scan on Logan they said his head was impacted with infection and his lungs were really scared ( beat up is what one Doctor said ). I have heard that John Hopkins in Baltimore is really good, where are you from? Do you know anything about this Hospital. Also what should I expect or what questions should I ask while he's in for his Hospitalization? Thanks for helping out.
Karen <img src="i/expressions/heart.gif" border="0">
 
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IG

Guest
John Hopkins is one of the best in the country as far as I know. PFTs are a regular thing for all CFers to have done at Clinic visits and hospital visits. The PFT results tell how he's doing in relation to others his size, weight, height, etc. PFT = pulmonary function tests. 20% lung function depends on what they're talking about (usually FEV1). And since I'm a lazy bum i'm just going to copy paste this.

<b>FVC:</b> Forced Vital Capacity - This is the total amount of air that you can forcibly blow out after full inspiration, measured in liters.
<b>FEV1:</b> Forced Expiratory Volume in 1 Second - This is the amount of air that you can forcibly blow out in one second, measured in liters. Along with FVC it is considered one of the primary indicators of lung function.

20% is... normal but not normal. 20% FEV1 usually means that they're not doing well lung wise [and is possibly on the lung transplant list] most CFers I know are 60-90% PFT range. Which is pretty good. It can be normal for a CFer to get down that low, but not that young that fast [my own personal belief] especially with all the technology out today. If his head is impacted with infections I think they mean sinuses. Which could be draining down into the lungs and causing frequent chest infections. I'd ask about that first and foremost, what can be done to clear that up and prevent it from reoccuring. As for the hospital... I know there was a thread on here earlier about what to take with you to the hospital, that was very helpful especially if it's the first time visit. As for what questions to ask.... Ask everything, get to know the ups and downs. What's this medication, what does it do, why are they giving it to him, what procedures are they doing, etc. It keeps you informed, you learn a lot [if you don't know what they're talking about just ask them or us] and you can catch mistakes which have been known to happen occasionally. Plus you learn alot about what your son is going through and what he might have to go through next time he's in the hospital. Now i'll stop rambling.
 
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Diane

New member
Welcome Karen !! <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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CFHockeyMom

New member
They don't usually do PFT's on the younger set. I believe they didn't start taking data on Sean until he was 7. The test is too complicated for young ones and means little.
 
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IG

Guest
They started doing PFTs on me when I was diagnosed.
Which was 5/6 ish so there's real no 'set' time. Whenever the clinic decides to do them.
 
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