ok i feel like i'm about a 7 on the scale of "normalcie" but my lung funtions are like at 53% but i still feel good!? i dont get sick that often but i do feel low on energy alot and i live for the most part a normal life for a 20 year old. is any one esle like this? and how do you all feel with your amount of lung capasity?
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Im right there with you as of late my lung functions kep going down but i realize that its just progression but because i dont let myself "get sick" or take cre of it before it happens i always feel pretty good. Dont get me wrong I have thos dasy in which we all have that you just wan to lay there nd veg. but i consider myself very lucky. But it is still unnerving to sit there and watch my PFT's go down and start talking about next steps when your feel so good.Joe 22 m/wcf/ ohio,kentucky (school)
I am 38 cf/ diabetes/ b.cepacia with my last fev1 @ 43%. I believe if i didnt have b.cepacia i would not feel bad in any way. I notice things these days like, i cough a WHOLE lot more than i would like to, i get out of breath easier ( which i hate), etc. I consider my self on a scale of 1 - 10 to be about 5- 1/2. If i stayed this way the rest of my life i could happily live with it. ~ Diane
I too am a 20 year old with reduced lung capacity, partially due to the fact that I had surgery to remove part of my lung when i was 11. My pfts are at around 43% but i feel totally normal and live a normal life. There are days when i feel worse or more tired, but i have cepacia too so i think this adds to it. I cant really imagine what 100% would feel like, because right now at 43% i dont feel that bad at all!-caitlin
Hello,Well my PFTs just dropped from 90ish to 40ish in a month... and believe me i would love to be back up there again. No one has a 100% answer as to why this happened, i do not have cipacea... At the moment i would say on a scale of 1-10 i am at 2 normally when i am not sick though i would be at about a 7... I love everything about my "normal" life, and i would not be happy to leave it yet, i want to live more of it.Love Julie
my name is KLa im 18 from australia and have recently moved to the adult hospital. at the childrens hospital my fev1 was in percentage predicted and i notice that thats how you all refer to your PFTs. but now that i am at the new hospital they only talk in litres, which i do not understand. my current pft is 1.4 fev1 over 1.97 fvc (litres)...does anyone know how to convert this to percentage and why does everywhere but here talk percent?? please help!
hey im 17 w/cf. my pfts r 35% and thats after two weeks of I.V! but my pfts hav always been low and i feel pretty good! my doc says that its strange that their so low and i feel so good but he thinks its coz they've always been low n dropped v slowly that my body has adjusted to it! but they hav started to mayb suggest transplant so if ne one has any advice that would b great! im not keen since im only 17 and i feel pretty good, i was sorta shocked when they mentioned it! any thoughts would b good! thanksSara
Hello, I'm a father of a 4 year old boy who has just been diagnosed with what the doctor called a "slight" positive sweat test to CF. I just took his stool sample to children hospital of Los Angeles to check for fecal fat (I think the doctor said that they would be able to tell something about him by studing that). My son hasn't displayed any signs of lung problems, the only possible sign is that he is very tiny (28 lbs) It is very hard on his mother and I to understand all their is to know. I guess I'm hoping that someone can tell me that while his life will be different it will be okay. I really enjoyed reading all your responses about how you are all feeling good. Can anyone please tell me what to expect?Alan
Hi Alan, I was diagnosed with cf when i was 3 years old ,and at that time , there wasnt much known about cf at all. I also was very small for my age, and only had slight digestive problems. I had a normal childhood in every way, and the illness didnt get in my way of anything. I had never done any type of chest percussion, only because the doctor said , since i didnt have lung problems , i wouldnt need it. ( i do it now though) The great thing about your son being diagnosed now is that we have so much more information and better treatments, with more on the way. Encourage your son to stay as active as you can get him to be. Exercise is the best thing for the lungs, as well as the the rest of the body. Try not to "baby" him too much because he has an illness. He will need to be independant and learn to take care of himself. Cf can be scary at times, especially when things start to progress. Try to do everthing the doctor tells you in the way of treatments . The key to longevity with cf is prevention . When a probem arises, face it head on and aggressively. Find out as much info about cf as you can, and learn to ignore the statistical life expectancy. Too many perfectly healthy people die young for various reasons, for us to worry about the statistics of life expectancy for one with cf. My parents were told many diferent ages i wouldnt live to see, i've seen them all , and i plan to see many more as well <img src="i/expressions/face-icon-small-smile.gif" border="0"> . If you ever have any questions you can always email me at Jinxnick@aol.com Take care and things will be ok <img src="i/expressions/face-icon-small-smile.gif" border="0"> ~ Diane 39 / cf / diabetes / b.cepacia