? for the older cfers

[ej0820]

First of all, I must say I meant no harm by titling this post "older cfers." I'm just looking for cfers older than I am <img src="i/expressions/face-icon-small-tongue.gif" border="0">. Anyway, just out of curiousity, what are your PFTs now and what were they when you were 20/21? I like to think I'm healthy, my PFTs are in the 50s, but then again, I think, "Wow, I'm already down to the 50s??!?!" Of course there are good days and bad days regardless...days it feels like I'll live forever and others that I feel like I need to be hospitalized for the next month. Also, I know cf differes from person to person, but I just want to get an idea of how your health has been since you were my age...is there anything that you didn't do treatment wise that you wish you had at my age, or do you think you would still be where you are at?

Any input would be great. Thanks.

 

[anonymous]

In my 20's I was extremely high. I can remember having PFT's atleast in the 112% range before. And that was with me going out and partying quite hard and bleeding often. Our disease is really weird. Combinations of many things that should come to some type of conclusion, rarely do.


Take care of what you have now, so you can make it last as long as possible.


(SD not logged in)

 

[JazzysMom]

I dont mind being in the class of "older CFers". Its an elite group. Anyway my PFT's are currently 41. When I was in my teens/early twenties they were high 80's to low 90's & probably lost most of that in 2000 when I had to stop working. I was 32 then. REMEMBER tho that I did NOT do my treatments so my progression probably would have been drastically slower had I tried to maintain my health instead of just treating flareups!

 

[anonymous]

31 here, at 21, my PFTs were similar to yours , upper 50s, low 60s. Now my pfts are in the 20s. I stayed close to 50 until age 28, then last couple years have been a large drop off. Keep up with your treatments, excersise, and look into supplements to help. Supplements are something I wish I would have researched more when I was your age.

 

[wallflower]

I was in the 90s in my early 20s. I can't remember exactly 90 what...but it was pretty good.

I am 34 now, and at 80. I am pretty good at doing my therapy, but I wish I had paid more attention to my vitamins. Right now, my vit D level is at 7 (which is pretty bad) and am a hair away from osteo - something totally preventable if I had actually taken my suppliments and exercised when I needed it. I can still raise it back up, but it sucks that I allowed it to get as low as it did.

If I were to offer you advice therapy wise, if you have a vest, don't be afraid to use it more often when you feel crappy. When I'm feeling really crappy, I'll do it by itself while I'm watching tv - anytime of the day. You just can't have enough of a good thing!

 

[65rosessamurai]

OK, I'll add my two yen!
I don't know what my PFT's were at twenty, but let's just say I could do sit-ups and side-kicks about head level to the beat of Michael Jacksons "Thriller" album!
Last month, my PFT's were measured after at least 15 years, and they were about 84%. I finally got the energy, and am taking the time to attend my Iaido classes so I can get my fifth dan this August.
I went last week Fri. and Sun., and was sore til Wed.! Hopefully I'll get back into it so I can increase my practice before the test.
Anyway, as JazzysMom said, we are of the elite group! (But, it's a tough age sometimes!)
Also, I must be running on luck, cause there is no CF support whatsoever in Japan!! I guess I'm lucky to be able to maintain my lungs and digestive system up to now. BTW, I just turned 41 yesterday (It might be today for you guys, though!)

 

[JennifersHope]

I am 33 and my PFTs are usually in the 90's most of the time, except when I am sick of course they go back down to the 50's or 60s, but I don't count them as true readings because of the fact that I am sick.

I attribute my PFTS being on the higher side to the amount of steroids I am on. The steroids have decreased the inflammation a great deal. Of course taking steroids has mostly negative side effects.. but the one benefit I have found was a dramatic increase in my lung function, and also on x ray and catscan, my films are really awesome looking...which always baffels my doctors.


Jennifer

 

[CowTown]

When I was in my 20s my pfts were in the 80-90s. I was at 58% at age 30. Once I stopped or slowed down tremendously on outdoor activities 3 years ago, my pfts have been dropping like flies. My advice is to stay as active as possible and never stop to invite the lung damage in. Two months ago I was at 41%, now I'm even lower b/c I have an infection. Hopefully I can pull it all back up.

You have meds to use now that I didn't at your age. So that's a huge advantage! Like Melissa, I also did treatments mainly just to treat flareups, instead of a real maintenance routine. Hope this helps.

 

[thelizardqueen]

Well, I'm only 24, but am still a bit older then you. At 22 my PFTs were sitting at 85%. Now that I'm turning 25 soon, my PFTs are sitting in the high 60s. This is only because I've been so sick lately. I have a goal to bring my PFTs back up to at least 75%, or higher.

 

[Diane]

I'm 41 now and my pft's are in the 48% range. When i was in my 20's i had very little lung issues at all . I hadnt had a pft till i was in my mid 20's and since i disnt know why we were even doing that, i had no idea to even ask what they were. My cf affected me very little and i almost never went to the Dr. after i reached my teens till i was about 21. Needless to say i also never did any type of treatments because i had no symptoms at all of cf. Even when i started coughing up small amounts of blood when i was 21 it didnt phase me because i was so healthy. Living with a guy who smoked may have been the reason why i was coughing up blood, but i was so in the dark about cf that it didnt phase me. When i was in my early 30's my pft's were in the 99-100% range and i started to get a better understanding of cf but still didnt get it completely. I figured since i was still so healthy it wouldnt catch up to me. Well that all changed when i got cepacia when i was 32. It made itself well known but when i went on iv antibiotics ( which i never did before i had cepacia) the symptoms would go away and id get better and figured i still didnt need to do treatments.Well let me tell you what changed my whole attitude about that................. when i had massive hemoptysis almost 4 years ago, i nearly died. After 2 embolizations i decided to learn everything about cf and then some. What i began to realize is.... the key to longevity with cf is, prevention. I did very little to prevent anything, but i finally got the message and started doing my treatments, because now i need them. In a lot of ways i wish i had learned more long ago, because i might have prevented getting myself into the 40's for pft's. Almost losing my life woke me right up and that isnt the way you want to be forced to start taking care of yourself. So the best advice i could ever give to anyone with cf is.... learn as much as you can, and ALWAYS do what it takes to stay well, prevention is the key.

 

[perl]

my pft was 46 at my last clinic visit, which was actually a slight increase. i was only diagnosed at age 31, so i didn't do any therapies before then, even though i was diagnosed w/ bronchiectasis at age 12. i was tested for cf, but the result was always borderline or negative. the docs wanted me to rotate antibiotics, but i refused (along w/ my mom). we felt it would completely deplete my immune system (which lo & behold it definitely has now!).
My biggest advice to you is to STAY ACTIVE. i trained as a gymnast for eight years as a kid, then danced & competed on the diving team through high school (along w/ cheerleading), danced during my college years, then got really lazy in my late twenties/early thirties. i am paying the price now, trying to get back to an athletic state & it's tough, AND i am sick all the time. i am convined that being an athlete all those years kept me out of the hospital!

 

[Jem]

By my twenties I had already had half of my left lung removed (age 19) because of hemoptysis so my PFT's were around 70 after that. At 40, which was 7 years ago, I had the rest of my left lung removed, again, because of chronic massive hemoptysis. My current PFT's hover around 45. I am feeling pretty darn good for a one lung cf girl or should I say a one lung old cf girl. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

Your all young.

PFT's fell due to cepacia in my mid 40's. In my 20's they were in the 80% as I recall and my exercise was rather extreme.

CF 55 TX cepacia (TX at 50).