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abloedel
05-30-2005, 07:36 PM
Does anyone have info on or know of a website that has info on FEV's and and how that does (or doesn't) correlate to life expectancy?

Also, this may may seem like a dumb question, but I'm going to ask anyway...is there a correlation between lower FEVs and more lung infection? I haven't been able to find any papers on this (maybe I'm not searching on the correct key words).

On average, how much do FEV values decrease after each infection?

Thanks - Amy, 36 w/CF

anonymous
05-30-2005, 08:11 PM
Amy, the lower pfts are the higher the infection is serious. It is not necessary that pfts decrease yearly. However, depending on your pfts and your health in general the doc can somehow assess the time by which you are set free. My pfts are in the mid 20s, andmy doc told me I can make it five years more without a transplant ( which im not gonna do). Ofcourse, it could be less or more but that was a prediction regarding my overall health status. What are your pfts Amy?

anonymous
05-30-2005, 10:22 PM
I have no references for the following stats but I was told them by my doctors:

CF doc - On average, people with cf can expect 3% decrease in lung funtion/year. I'm sure it varies GREATLY though. B/c I was having more than that they wanted to treat me aggresively.

Transplant doc - with FEV1's around 30% there is a 50% expected survival rate of five years. 25% for 10 years.

I've been in the 20's and 30's for about three years.

Jason 30 w/cf

anonymous
05-30-2005, 10:55 PM
I've been hoovering around the lower 30's for about 4-5 years now (with some ups & downs).
It is hard to answer your question because we are all different and also if you have MRSA, B Cepacia, etc, those could also be factors that effect FEV's too.
Have you came out & directly asked your doctor about this & is transplant anything you ever want to look into?

abloedel
05-31-2005, 02:52 AM
I have tried asking my doctor about it, but they won't yet give me a direct answer. As some of you know, I was just diagnosed in March with CF. They (the doctors) say prognosis has a lot to do with what you culture. Although I currently only culture Staph A and many other "relatively benign" organisms, they strongly suspect Pseudomonas based upon how I describe my sputum, but so far I haven't produced a sample containing Pseudomonas.

My PFT's have gone from mid 60s down to mid to lower 50s over the last few months (although they did go up to low 70s when I was on Pulmozyme, but I had a reaction to it so I can't take it). I've got a sinus infection right now I don't seem to be able to shake so I don't know what getting rid of the sinus infection will do to my PFT's. They want to start me on the HTS when I go back for another follow up in late June. I know my PFT's are higher then a lot of folks on this site, but the rapid decline worries me, but perhaps that is normal??? My cough is getting worse again, chest hurts again, constant headaches again....just feeling similar to how I was prior to my hospitalization in January....I'm probably just being a "big baby" and having one of "those" days.

My husband will turn 40 this year and probably between that and getting the CF diagnosis, I am just thinking a lot about life and death. I found an article "Predictive 5-Year Survivorship Model of Cystic Fibrosis" where FEVs are only a PART of the equation, but I don't understand half of the paper! I also found something on the Univ of Minnesota Website aobut Aging with CF, and it lists ages of CF "survivors" worldwide over 40...there didn't seem to be a lot (at least percentage wise). But, I know there are a few on this site...and that's encouraging!

I know that no one can tell me "you have 6.8 years to live" or whatever, I've just been thinking a lot about it lately and was wondering if anyone had any info other than what I've been able to find. Stats sometimes help....I'm already saying I've beaten the odds about age, since the new median age is 35.1 years and I'm 36.5 years and I'M STILL HERE!

Amy 36w/CF

anonymous
05-31-2005, 10:47 AM
Hi Amy,

Unfortunately, I do not have any stats for you. However, I would just like to add my two cents worth.

I understand that you are not feeling too well these days and are concerned about your PFT's. Can you muster the strengh to do any sort of physical activity, even rapid walking? Although I cough a lot more these days, what has been really successful for me in getting my FEV and FVC up is exercice and a lot, lot, lot of water. This combination has liquified the mucus so that I can cough it out easily.

See what you can do. It is not always easy to exercice when one is not well. Sometimes I need to force myself even though I do not physically feel well.

Based on my experience, my FEV's have fluctuated to extremes. When my FEV's were in the lower range, my doctor would ask me how I felt. If I responded that I felt fine, he would then say to me "We do not treat numbers, we treat how you are feeling."

Hope this provides a bit of encouragement.

Dxat35

anonymous
05-31-2005, 11:30 AM
It's good that you haven't "cultured" pseudomonas, but like you said, you may still have it. It can be managed, so don't panic if you do ever culture it.
I would encourage you to use caution when visiting the CF Clinic and use antibacterial wipes while you're there & definately when you leave, before you even start the car just so you don't pick up anything new there.
At our CFC, we wear a mask & have to use antibacterial liquid upon arrival. I wonder which other clinics use the same precautions?