I just got out of the hospital Tuesday night . When I went in my fev1 was 29 . My baseline on my last clinic visit was 42 . I got it back up to 39 before I got out of the hospital . I want to get it up more. I have a treadmill , but what else can I do to get my lungs back in shape .
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
getting fev 1 back up
- Thread starter regina65
- Start date
Twistofchaos
New member
Well done getting your fev1 back up!
Sometimes it's possible to get it up even higher, if you were not at your strongest and lungs were not clear. Or if that's just what your lungs are like now, when you were not sick and lungs were clear when you got 42. (Luckily, 42 is also the answer to life, the universe and everything.)
But even if your lungs are limited then you can get your body much stronger and function much better thus effectively raising it.
Could set yourself realistic goals to achieve on the treadmill to get motivated and do it often. If you have serious trouble on it then see if you can get home oxygen to support you load and strengthen your body and heart. Personally, I really like weightlifting and it has stabilised my lungs since I started and for many years now. Made me much stronger, I seem less susceptible to the flu and so on. I also started with a treadmill and kept expanding my home gym.
I really like hypertonic saline. Helps me clear out my lungs much better than the combination of Mistabron and low% saline that I would use prior. And much better than Pulmozyme but that one works a little different.
A combination of keeping your lungs clear and your body strong the best you can, eating well, finding things in life that you enjoy..and getting bloodshot eyes and crosshairs in your vision when it's time for a lungfunction test.
Sometimes it's possible to get it up even higher, if you were not at your strongest and lungs were not clear. Or if that's just what your lungs are like now, when you were not sick and lungs were clear when you got 42. (Luckily, 42 is also the answer to life, the universe and everything.)
But even if your lungs are limited then you can get your body much stronger and function much better thus effectively raising it.
Could set yourself realistic goals to achieve on the treadmill to get motivated and do it often. If you have serious trouble on it then see if you can get home oxygen to support you load and strengthen your body and heart. Personally, I really like weightlifting and it has stabilised my lungs since I started and for many years now. Made me much stronger, I seem less susceptible to the flu and so on. I also started with a treadmill and kept expanding my home gym.
I really like hypertonic saline. Helps me clear out my lungs much better than the combination of Mistabron and low% saline that I would use prior. And much better than Pulmozyme but that one works a little different.
A combination of keeping your lungs clear and your body strong the best you can, eating well, finding things in life that you enjoy..and getting bloodshot eyes and crosshairs in your vision when it's time for a lungfunction test.
jbrandonAW
New member
Have you looked into changing your diet? Check out my blog, its about my journey to heal my CF naturally and get my lung function back into the 60's atleast - even though my dr has given up on me. My current lung function is around 45%. It was 56% in august of 2011 and 35% around the strart of feb 2012.
jbrandonAW
New member
Im not sure. She has only been my doctor since august of 2011. When I started at her clinic I had a lung fuction of 56% but Feb of 2012 I had a fev1 of 36% - she decided to talk transplant and put me on all kinds of meds. I decided to start taking my health into my own hands. She can't stand that I choose supplements over meds. Also it could be bc I smoke mj. I had a long time problem with pain pills after needing to be on them for 6 months. Well to get off them and manage the pain I start smoking bc it got rid of the pain and I could still function. She hated that so much so would throw pain meds at me.
occupyjapan
New member
Im not sure. She has only been my doctor since august of 2011. When I started at her clinic I had a lung fuction of 56% but Feb of 2012 I had a fev1 of 36% - she decided to talk transplant and put me on all kinds of meds. I decided to start taking my health into my own hands. She can't stand that I choose supplements over meds. Also it could be bc I smoke mj. I had a long time problem with pain pills after needing to be on them for 6 months. Well to get off them and manage the pain I start smoking bc it got rid of the pain and I could still function. She hated that so much so would throw pain meds at me.
I don't even know where to begin with this post, but it's pretty disturbing and I'm pretty upset that you'd post stuff like this here, since all that will come of it is other desperate people either getting false hope or really upset.
First, your doctor hasn't given up on you. Why in the world do you equate "putting you on meds" with "giving up on you"? That is an extremely dangerous, foolish thing to post around here. You're alive BECAUSE of the advances medical science has made regarding our disease, not despite them. An FEV1 of 36 is a reasonable place to start talking transplant, especially if she sees that you are on a downward trend. It doesn't mean "give up on all other treatments" or even "force you to get a transplant". It means having a contingency plan in case you don't respond to treatment.
Second, you really make it seem like your doctor has an agenda to push meds on you. She doesn't. Her agenda is "you remaining alive, first and foremost, and as comfortable as possible" and peer reviewed science says that what she is doing is the best course of action. If you seriously see some huge conspiracy here, maybe you should lay off the weed (or "mj" as you put it).
Speaking of which: third, you smoke? That is absolutely nutty. I'm sorry. I don't care if it's cigarettes or pot or whatever; you have advanced stage lung disease. You really probably shouldn't inhale smoke into your lungs on a regular basis. You'll no doubt quote me something that says that pot is a mild bronchiodialator (keyword: MILD). That is true, but do you know what else is a bronchiodialator? Albutoral. And it doesn't involve inhaling smoke into your lungs. The only benefit you're getting from smoking is the pain relief and stuff, which can also be accomplished via meds that don't involve inhaling smoke. Smoking pot to avoid taking meds, by the way, is the most hilarious thing ever. It's a drug/med too, silly. Don't get me wrong, I'm all for legalizing weed but for god's sake, man, you have Cystic Fibrosis. Smoking ANYTHING is about the dumbest thing you can do. If you absolutely must do it, look into vaporizing it or ingesting it or something else. Good grief.
Fourth, a healthy diet is important. However, you really come across as one of those "eat 600mg of Fartberry Root and take some colloidial silver daily and your CF will be CURED!" crackpots. You can't fix CF naturally. People have tried for thousands of years, long before CF even had a name and CF remained a death sentence at a young age. It was only when medical science started making advances - in antibiotics, in mucolytic therapy with MucoMyst/Pulmozyme and now with corrective therapy like Ivacaftor/Lumacaftor/etc. - that we started seeing an increase in lifespan. I really, really, REALLY hate the idea that all the world's doctors and researchers are supposedly in on this big conspiracy to push medicine that supposedly does more harm than good. NO. It DOESN'T do more harm than good. It is the best we currently have and has resulted in many people - myself and YOURSELF included - living longer lives.
Fifth, this is a forum for people with CF and you're obviously welcome to post here, but do you ever, for a minute, consider the consequences of your actions? You have desperate, hysterical parents of children who just got diagnosed and are looking for anything to help their children, and then they see you saying "My doctor gave up on me by expecting me to take medicine for my CF WOOOOOO 420 SMOKE WEED EVERYDAY". At best, you aren't offering them any constructive advice at all and are confusing the issue. At worst, you are undermining the very people and treatments and medicines that can help their children.
You really come across like one of those AIDS denialists that think they can diet and "alternative therapy" away their AIDS and end up dying of an AIDS-related illness despite all their efforts. Sorry for the strongly worded reply, but you come across as someone working his or her way through the stage of grieving re: their illness and in desperate need of a reality check.
occupyjapan
New member
Long story short, if you honestly feel that your doctor isn't doing a good job, GET A NEW DOCTOR! Do NOT self-medicate or refuse to do treatments or whatever else.
B
becsher
Guest
Good job Regina! Going from 29% to 39% FEV1 is a big start. It can recover to your norm over time. My husband is at 45% as of today. He swears by swimming and says he feels he can get a deep breath when he swims and feels like his breathing is much more relaxed. As I have posted before, we do not know why this works so well for him but it does and we are happy with it. When he swims gets a routine down of swimming 3-4 times a week his FEV1 usually increases. It is worth a try. Of course, he still does the hypersaline, vest, breathing treatments, huff cough (when he started doing the huff cough he cleared much more of his secretions improving his FEV1), etc. Kevin did not believe the huff cough would work so his pulmonologist did a spirometry pre and post huff cough and we saw an immediate increase in the small airways on the spiro. Hope this helps and good luck. Always have to stay one step ahead of the game!
I think we also shouldn't judge peoples actions. I noticed on this site that people really have a strong opinions on everything that is not "normal CF life." I personally am 27 years old and I have never been on CF meds. I have DDF508 and I have been in the hospital twice on Ivs. I wasn't dx until 15 so I lived some of my life never knowing the meaning of "CF." I agree that you have to be your own doctor! I cant stress this enough! Just because someone has a degree doesn't not mean they are "all knowing." I have really learned this lesson on some things the doctors have told me to do, years later said that actually would never have helped me. I am a all natural freak also. I have a Nutri bullet and I think that is the best CF medicine I have ever had! Raw garlic, ginger and lot of fruit and veggies daily. I do agree smoking weed with CF isn't the best thing, but everyone should live their life as they choose and not have to be judged. Im sure there is a lot of people who think Im crazy for not listening to the doctors and refusing their hyp saline, vest, and antibiotics. To me, I don't care, I feel like its the right path. Also doctors are out for money, they don't work for free and the good of man kind. They work for money! I listen to there advice, and I do what I think is right for my body. I have the disease, its my body, and I know it best. All natural is the way to go, doctors don't prescribe a natural way of life because there is no money in it.I don't even know where to begin with this post, but it's pretty disturbing and I'm pretty upset that you'd post stuff like this here, since all that will come of it is other desperate people either getting false hope or really upset.
First, your doctor hasn't given up on you. Why in the world do you equate "putting you on meds" with "giving up on you"? That is an extremely dangerous, foolish thing to post around here. You're alive BECAUSE of the advances medical science has made regarding our disease, not despite them. An FEV1 of 36 is a reasonable place to start talking transplant, especially if she sees that you are on a downward trend. It doesn't mean "give up on all other treatments" or even "force you to get a transplant". It means having a contingency plan in case you don't respond to treatment.
Second, you really make it seem like your doctor has an agenda to push meds on you. She doesn't. Her agenda is "you remaining alive, first and foremost, and as comfortable as possible" and peer reviewed science says that what she is doing is the best course of action. If you seriously see some huge conspiracy here, maybe you should lay off the weed (or "mj" as you put it).
Speaking of which: third, you smoke? That is absolutely nutty. I'm sorry. I don't care if it's cigarettes or pot or whatever; you have advanced stage lung disease. You really probably shouldn't inhale smoke into your lungs on a regular basis. You'll no doubt quote me something that says that pot is a mild bronchiodialator (keyword: MILD). That is true, but do you know what else is a bronchiodialator? Albutoral. And it doesn't involve inhaling smoke into your lungs. The only benefit you're getting from smoking is the pain relief and stuff, which can also be accomplished via meds that don't involve inhaling smoke. Smoking pot to avoid taking meds, by the way, is the most hilarious thing ever. It's a drug/med too, silly. Don't get me wrong, I'm all for legalizing weed but for god's sake, man, you have Cystic Fibrosis. Smoking ANYTHING is about the dumbest thing you can do. If you absolutely must do it, look into vaporizing it or ingesting it or something else. Good grief.
Fourth, a healthy diet is important. However, you really come across as one of those "eat 600mg of Fartberry Root and take some colloidial silver daily and your CF will be CURED!" crackpots. You can't fix CF naturally. People have tried for thousands of years, long before CF even had a name and CF remained a death sentence at a young age. It was only when medical science started making advances - in antibiotics, in mucolytic therapy with MucoMyst/Pulmozyme and now with corrective therapy like Ivacaftor/Lumacaftor/etc. - that we started seeing an increase in lifespan. I really, really, REALLY hate the idea that all the world's doctors and researchers are supposedly in on this big conspiracy to push medicine that supposedly does more harm than good. NO. It DOESN'T do more harm than good. It is the best we currently have and has resulted in many people - myself and YOURSELF included - living longer lives.
Fifth, this is a forum for people with CF and you're obviously welcome to post here, but do you ever, for a minute, consider the consequences of your actions? You have desperate, hysterical parents of children who just got diagnosed and are looking for anything to help their children, and then they see you saying "My doctor gave up on me by expecting me to take medicine for my CF WOOOOOO 420 SMOKE WEED EVERYDAY". At best, you aren't offering them any constructive advice at all and are confusing the issue. At worst, you are undermining the very people and treatments and medicines that can help their children.
You really come across like one of those AIDS denialists that think they can diet and "alternative therapy" away their AIDS and end up dying of an AIDS-related illness despite all their efforts. Sorry for the strongly worded reply, but you come across as someone working his or her way through the stage of grieving re: their illness and in desperate need of a reality check.
The best thing is working out and get a Nutribullet. Blend fruits and veggies that are high in Vit C. I also do raw garlic and ginger. Raw garlic is awesome for when you are sick or feeling run down. The juicing with the nutribullet also got rid of my tonsil stones in my mouth. My tonsils were full of stones when I would feel tired or run down. I have been on the Nutribullet, juicing for 4 months now. I have not had one tonsil stone! I got sick about a month ago and I got rid of the illness on my own with the Nutribullet. No antibiotics, no doctor! I have never felt better! My next step is to start hitting the gym hard. My lung function is at 80%, base is 83%, so it went down a bit. I would like to get it back up to at least 86%.