lung function
- Thread starter lovelifepassion
- Start date
franzie2984
Member
Age 29, female, Double D508, mine is usually between 102-112%. These percentages vary depending on which measurement they use at your clinic, my clinic uses a lower threshold (meaning my percentages look higher there than they might at a different clinic), so my numbers are FVC: 3.75 liters FEV1: 3.16 liters.
W
welshwitch
Guest
Wow, awesome PFTs, Printer! Can I ask what you mean by your secret being the mutations?
JustaCFmom
New member
3 kids with CF: ages 9,16,21.
FEVs all over 100.
The 16 yr old was at 75% when she was sick, but now, with a proper diagnosis and treatment, is consistently over 100 and gained 20 kilos (around 45 lbs) in a year!
The 21 year old is VERY athletic and only got diagnosed because of sick sister. He is setting records at the clinic with PFT results around 130. I am grateful, and optimistic; but still a concerned mom.
The 9 year old has the most breathing issues since he has always been "Mr. Allergies".
The 21 yr old has shown me what being active means with "facts on the ground" and I try to encourage everyone to GET MOVING (Myself included
)
I keep an excel file of their results and then they can visualize how they are doing. (I hope it will motivate, but don't know if it has)
Keep strong and "Just do it".
FEVs all over 100.
The 16 yr old was at 75% when she was sick, but now, with a proper diagnosis and treatment, is consistently over 100 and gained 20 kilos (around 45 lbs) in a year!
The 21 year old is VERY athletic and only got diagnosed because of sick sister. He is setting records at the clinic with PFT results around 130. I am grateful, and optimistic; but still a concerned mom.
The 9 year old has the most breathing issues since he has always been "Mr. Allergies".
The 21 yr old has shown me what being active means with "facts on the ground" and I try to encourage everyone to GET MOVING (Myself included
)I keep an excel file of their results and then they can visualize how they are doing. (I hope it will motivate, but don't know if it has)
Keep strong and "Just do it".
Ditto. Deb and others are right, EXERCISE is crucial. Heavy duty. Don't let your job/career, make you cut back like I did. And you have to love it, or you won't find the time to do it.
Also tons of water, green tea, and Carrot/apple or orange, and other combinations. Get a good juicer, and make that part of your treatments. My last hospital stay was in 2008, and that's how I do it. My lung function has come back up this way...
W
welshwitch
Guest
Dancer--I'm curious: what's the juicer do? How is it part of effective CF treatment?
Great question WW... I diligently juice as part of my daily treatments. Carrot/apple/celery is really good, or carrots with a couple of oranges. Makes a huge difference in my lungs. I've experimented with this for years, and once I got off the juicing (and water) was when my lungs went down huge. The reason is the lungs need massive Vitamin A to repair and rebuild the mucus membranes. A big salad at night is great, I do that too, but it's not enough. We cfers need massive vitamins to repair. They can't come from just pills.
Don't get me wrong, I take vitamin supplements too, lots, but it can't substitute for nature. It took me years to get that, but what a difference.
My lungs have since built back up and I got my life back, thank goodness. But I have to be as agressive with juicing as the pulmozime ad saline, which is all I do. No vest, I work out hard instead. Juice 5-6 days a week and lots of water. If I cut back on the carrot juice I see my lungs start to clog up again.
The meds are great. But they don't actually heal or cure. I made it a hobby a long time ago to study nutrition and how it affects different parts of the body. That led me to the juicing... It's really hard to actually to eat a TON of veggies every day (picture a big bushel full.) But you can if you drink it! Some people think it's a pain, but I guess they can breathe deeply! I used to take it for granted too.
Best juicer I've found (and I've had 5 of them) is Jay Kordich's Power Grinder Pro. Worth the time and money. Last time I was in the hospital was 2008.
Hope this helps, and let me know.
W
welshwitch
Guest
Wow, thanks Dancer. I will definitely give it a try. Thanks
Gentrygirl
New member
My son is 16, stays over 100%, last visit was 127%! The RT joked and said he almost broke the machine. I agree with Bill, what mutation you have is going to play into it, and there's really nothing you can do about that. I think even with the same mutation, because people are different, each person will react differently and have different levels even if everything else is the same (diet, exercise, meds, type of treatments, etc.). Outside of that, I'm going to say his amount of exercise (he's been playing a lot of airsoft and Ultimate Frisbee- tons of running and jumping) is important, and I'm going to throw in diet, also. The doc collaborated- she said they don't know why, but that weight can really affect lung function. I made a goal to fatten him up before this past visit, and it did really made a difference. MAGIC MILK: add half & half to his milk thermos at lunch, as large of a ratio as he can stand. I put tons of carbs in his lunch, and extra salt so he's thirsty for the milk. I make sure to send him hot food (I bought microwavable hot packs online); hot pasta dishes, lasagna, hot pockets, pizza, hot wings, burritos with rice, etc. because he tends to eat more when he has a hot lunch than a cold one. We were lucky and drew a pretty good card for drawing within the CF suit; we won't overlook it and we are grateful.
chelsie882003
New member
43% and im a 24yr old Female lives in New Mexico
37 years old and 35% FEV1 (preferred it when my FEV1 was larger than my age...)
And yeah, staying well is all down to genes, BUT not only your CF mutations!
(Multiple research studies have shown CF mutation class I class II and class III only correlates to pancreatic sufficiency and not to lung involvement, whereas class IV and class V correlate to lung involement)
Its down to other modifier genes, factors that control your immune system, lung environment, cardiovascular strength.
So longevity is pretty much down to luck.
No doubt, all the medical/nutritional/exercise advances have helped us extend our lives and improve quality of life (probably even more important).
But when you read about people with extensive lung disease in their teens or earlier, it didn't matter how much IVs, physio, exercise they did, they just had a very unlucky set of genes.
And yeah, staying well is all down to genes, BUT not only your CF mutations!
(Multiple research studies have shown CF mutation class I class II and class III only correlates to pancreatic sufficiency and not to lung involvement, whereas class IV and class V correlate to lung involement)
Its down to other modifier genes, factors that control your immune system, lung environment, cardiovascular strength.
So longevity is pretty much down to luck.
No doubt, all the medical/nutritional/exercise advances have helped us extend our lives and improve quality of life (probably even more important).
But when you read about people with extensive lung disease in their teens or earlier, it didn't matter how much IVs, physio, exercise they did, they just had a very unlucky set of genes.
Gentrygirl
New member
35 year old male, 95% FEV1. Down from 102% last year when I was still in the Marine Corps and doing physical training every day. I need to get back into shape.
?? My husband was a Marine, Force Recon. I thought with my son having CF, that he wouldn't be eligible to serve. That's not the case?
Thank you for your service!(L)