teen needing to talk to adult CFers!!!!

sbrjtl

New member
I am 17 and my PFTs are in the low 90s. I know that is good, but I wanted to talk to some one older and ask this question. If anyone had their PFTs at my age what is your age now and what are your PFTs now. I just afraid they are going to start declining a lot b/c a little less than a year ago, they were like 99% and they dropped to like 89% and 90%. I can't seem to get them back to where they were. I know that the 90s are good, but I saw somewhere they decline like 4% every year. That really worries me.

Sara 17 w/CF
 

anonymous

New member
I am 21 but was never told what my pfts were when I was at a pedi doc, never even knew i should have been asking. My pfts now are at 64% some where around there. Don't pay attention to the thing you read about pfts dropping 4% every year. Everyone is different and I don't think it will apply to you at all. Were you sick with in the last year to cause that drop? I know people that had a drop like yours and some recovered it although it was a slow process and some who have stayed at lets say they went from 90 to 80 and stayed at 80 for years and years. I know for a fact that before my pfts were low , when i had switched form a pedi doc to a different adult clinic they had told me I am looking better then when they first saw me 2 years ago. Even though my pfts just went up a few points sence seeing them i feel better all round. So even if your pfst drop a little don't worry. keep up your exersise and do treatments and meds like your supposed to and you will be fine. the other best thing to do is go to the docs when you feel an infection coming on don't wait it out that can cause some lung damage and may affect your pfts in the long run. anyway let me just say again keep active and on top of your treatments and you will be fine.
Amanda
 

anonymous

New member
Ditto to what Amanda just shared. Those are just numbers, everyone has a little different case. Like Amanda said, really stay active & excercise, this is key to keeping those lungs strong! Of course, take your meds & treatments, etc too!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
Hey Sara,
I'm 31...have never had pfts in the 90s....but mine were in the low to mid 80s when I was your age. I'm at 73% now...but still are good numbers for a person with CF. I agree with the other 2 posts...these are just numbers . Keep up what you are doing...sounds like whatever it is ...is good for you! And dont believe that pfts decline every year 4%...everyone is different. I have remained where I'm at for at least 4 yrs! Take Care!
Dea
31 w/CF
 

MarkR

New member
Everone is different, some people don't even get diagnosed until late in life and had a regular life. Some are bad right at birth. My brother was very sick all his life and still lived to late 30s. Me I was healthy all the way up to my 20s and then declined fairly fast. When I was 38 my PFTs got down to 18% . needless to say I needed a TX. and got it last year. Anyway you are different then anyone else. no one can tell you how fast your CF will progress. I'm really sorry if I have frightend you, I don't want to. <img src="i/expressions/face-icon-small-frown.gif" border="0">

Mark 40 w/Cf
 

anonymous

New member
When you guys are stating your PFT percentages, are you stating your FEV1 percentage?<img src="i/expressions/face-icon-small-confused.gif" border="0">
 

anonymous

New member
Sara,

My doctor's also told me that on average a cf patient will lose 1 - 4 % of lung function a year, of course everyone is different. The best thing that you can do to maintain your lung capacity is to exercise regularly. Just 20 minutes of cardio a day will help a lot.

Dave 29 w/cf
 

HollyCatheryn

New member
I agree with the other posters, but especially Dave. They are just numbers, but if you don't like them, try to change them. To a certain extent, you can. Get active, exercise. I told someone else recently that when I was a swimmer my PFT's over 4 years went from (FEV1) 110% up to 145%! I know that sounds crazy, but it is possible not only to not LOSE function, but to gain it. Make sure your nutrition is excellent so that your body has the energy it needs to fight infection and to do the exercise that you decide on. Pick something you like and try to get another person involved (or join a team) to help you stay motivated and regular. Then go for it. Another thing to be aware of is that several studies have shown the effects of hormones and stress during the teen years to cause increased health issues for people with CF. That sounds bad, but the good news is that most people enjoy a recovery when they get into their 20's. They begin having fewer infections, or less severe infections. I went from having 5-6 hospitalizations a year during my late teens (17-19) to having had only 2 hospitalizations in the last 3 years. I was last hospitalized a year and a half ago. That is the longest I've ever gone wothout being in the hospital. Hope something I've said can help you. Good luck.
 

KyLaJiLL

New member
I agree with what everyone has been saying. They really are just numbers. The most important thing is how you (physically) feel. My numbers range in the 80s right now, which is really good. The used to be a little higher, but for the most part I've stayed about the same for the past several years. I think it depends more on what your body can handle. We used to know a kid w/ CF whose PFT averaged in the 120%, but whenever his PFT hit the 100% he was super sick and had to be hospitalized. So yeah, my point is that you can't just look at the numbers alone! Hope this helps!!
 

serendipity730

New member
Hi,
I'm 22 now, but when I was seventeen my pft's were in the mid 90's. Now they fluctate between 65-75 (FEVI that is.) I was told that after the early twenties, lung function starts to deteriorate in everyone, slowly, at about 1-2% a year. Personally, I have only ever had one big dip in lung fuction that knocked me out of the nineties and put me around where I am today. Keep in mind, just because your lung function takes a hit doesn't mean you can't bring it back up! In April, I was blindsided my this whopper of an infection, and my pft's dropped to 28% (a number I hope not to see again for a very long time.) Well, to make a long story short, the last time I had a "tune up" they jumped all the way up to 80%! So, try not to let the numbers get you down, they are, afterall, just numbers!<img src="i/expressions/face-icon-small-smile.gif" border="0">
Best wishes,
Mary
 

anonymous

New member
Hello everyone, I'm 23.5 years old female. My FEV1 is between 40-43% in the last year. Still no talks of TX yet. Don't be scared...just live life day by day to the fullest. Take care!<img src="i/expressions/face-icon-small-wink.gif" border="0">
 

KidRage

New member
Sara

im 24 male from Canada with cf at age 17 my pft was at about 34% now it is at 18% almost transplant time for this guy but when i was
15 my pft was at 28% it can go up or down with each year it doesnt really matter. Personally i think its mind over matter because even
at 18% im still here readin forums so just keep positive!!!!<img src="i/expressions/face-icon-small-wink.gif" border="0">
 

anonymous

New member
hey all im a 25 m my pulminary functions are qround 80% they used to be higher, but the doc said we lose our lung capacity faster than normal peeps, yearly
 

Dustin82

New member
Hey everyone I am a 22 old male from MO I dont have a clue on what my numbers are but like everyone is telling u it just a computer with numbers it does not matter what it has it truly matters how u feel and how u take care of yourself the doctor may sometimes may scare u but they are just telling u what they know that does not mean it will happen to u it may of just happen to someone that had CF every CFer has there diffrent probelm in there own way just live your life like u want to live it and dont be scared
Dustin <img src="i/expressions/face-icon-small-wink.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
I understand what you mean and what you are feeling. I am a 27 year old male with Cystic Fibrosis. I have always done my best at physical therapy (treatments) doing 2-3 a day. I go to the doctor every 3 months and all I can tell you is its a roller coaster. One time I may be up and the next time may be down. You just have to keep sticking to whats working for you, in my experience therapy is the key to long term success.
 

gstvixen

New member
Hey--when I was 17 my FEV1 was btw. 90-95 (i had a real low point 49 when i was sick but it bounced right back up) now at 23 my FEV1 is around 70 to high 60's...and im pretty happy with that....but just remember that everyone with CF is different and what happens to one person may not happen the same way for you...besides they are just numbers. Hope this helps!

this question goes to Mark--a TX what is that? and at 18% did you need oxygen? i only ask bc my brother is around that now..and im just wondering what's going to happen and what his options could be??? thanks!
 

anonymous

New member
ya they are just numbers its how you feel that really matters. my pft's right now are about 29/25. but i feel pretty good. so dont worry i used to worry all the time about the #''s but my doc said dont becuz it doesnt tell us everything the main thing is you feel good and are doin well!!

nicole 22 CF
 

serendipity730

New member
Sara,
Everyone is different, but my pft's were about that at your age. Now, at 22, I would say that my baseline is 75% or 2.4 liters. The better you are with your treaments, the more you will be able to maintain ur pft's.
Mary
 

anonymous

New member
hello i was just wanting to reply because i have a daughter that is 11 and the docs say things to me that scare me and i try hard to take care of her and it seems no matter what i do every visit she goes to its seems nothing at home works. can anyone help
 
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