Encouragement to those struggling to improve lung function

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running4life

New member
Hey guys - I just want to give you some encouragement.

March 2012, my lung function was at it's worst - 57%. I was in the hospital for 3 days and sent home for 2 weeks of IV antibiotics. This was my first hospitalization yet, I was just about to turn 25.

This Wednesday at clinic, my lung function (Fev1) was 95%. It is possible to turn things around. Three months before this, it was 86%. My doctor was completely shocked as I am. He told me when I was at 86, to not expect much more improvement. I have worked my ass off to get here, but I want to encourage you IT IS POSSIBLE. Don't give up.

I exercise 1-2 hours a day with heavy, intense cardio for 30-60 minutes 4-5 days a week. I weight train 5-6 days a week. I eat anti inflammatory food and reduced the amount of sugar in my diet greatly. I drink tons of water and green tea. I take Foradil and then do my vest for 30 minutes each morning while doing HTS and using the Acapella. Then I do Pulmozyme and Cayston if it's time. Thats it for breathing treatments. Occasionally, I will do more Vest treatments if I am feeling congested, but that's probably only a few times a month.

I am hoping to start a blog to encourage people with CF to pursue a healthy diet and exercise as a way to improve lung function and hope to encourage as many as possible. God equipped me to do this and I did it through Him.

Don't give up guys. Even when your doctor says that you are "stuck" at this new baseline. Don't take no for an answer. Take things into your control and FIGHT. It's worth it. Believe me. Please feel free to ask any questions, I hope to help as many of you reach this level too. I am also a personal trainer and want to start training clients online. I never thought I would see this number again at 26 years of age. Don't give up guys!
 
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Gorf

Guest
I am 48 year old male, fev1 last 3 years (lowest 29 highest 44). I work a full time job, Doc wants me to file for disability and make my job excersise. I am in the hospital at this time. I started the process of filing. I am interested in getting set up on a regiment that I can handle and push myself further up on the fev1.
 
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moxie1

Guest
Question....did I read correctly? Are you using the acapella at the same time you are vesting? Do you find that to be more effective than just vesting?
 
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running4life

New member
Yes, I put the Acapella on the hardest setting and do several big blows of air in a row, try to make myself cough and then continue on with the HTS. I probably do that every 5 minutes or so with the vest on. Works so much better than just the vest. The vest doesn't do a whole lot for me by itself.
 
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epicurus

New member
My lung capacity has increased from 3.21 Litres last year to 3.71 Litres now which is 100% predicted! I agree with running4life that there are so many things that we can do to help ourselves stay well, which I talk about on my blog :) Anti-inflammatory 'paleo' type diet, glutathione & antioxidant supplementation, and exercise are all keys for me.
 
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keefer11

New member
That is amazing! Great job!

A side note regarding the acapella/vest combo - I do my flutter at the same time as vesting because like Running4Life I don't get much out of the vest but feel like doing it simataneously is better than doing either separately.
 
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kristal k

New member
That's amazing! I was down to fev1 27 a yr ago, after a pretty bad bout. Last tested 5 months ago at 35 during an infection. I know my next test will be way better because of Yoga! I started a week ago when I notice more congestion and tiredness, now my husband is following me around watching to make sure I'm not getting over-tired.

to Gorf: on disability you can still work part time when you are up to it and when you get healthier and in a routine it is possible to go back, just don't over do it like I did. I hate being on my o2 leash! Key words for disability are lack of sleep due to coughing and the discrimination act (I think from 95) that names cystic fibrosis. Those will help it go through the first time.

luck and luv 2 all!
 
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kristal k

New member
I get more out of the vest if I sit on the couch and put my head on the floor, or lay on my back with a couple pillows under my rear.
 
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kristenj

New member
I am so happy for you and your results!!! My question is how do you take in enough calories etc to maintain weight during this much intensive exercise...particularly of non-inflammatory foods? When I work out this hard, my weight drops. I tried to quit eating dairy, but again, my weight drops. I would love to hear what you are eating! Thanks so much!
 
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running4life

New member
I don't have an issue keeping weight on, if anything I have to keep weight from creeping up. I'm still small (118 and 5'3" with a muscular build) but I eat anywhere from 1500-2000 calories a day.

My advice, don't cut dairy, gluten or any of that. Eat whole "clean" food. I eat the same things constantly.

I've been on an insomnia med that has decreased my appetite so I have dropped several pounds, but am not concerned, because I can gain easily. Anyway, I eat natural PB, lots of boiled eggs, chicken, broccoli, carrots, celery, bananas, full fat greek yogurt, All Bran cereal, apples, protein shakes, over night oats, beans, quinoa, brown rice, olive oil, sometimes cheese and crackers, and thats really about it. I live alone and work part time and workout so much, I don't usually have the time or energy to put into making elaborate meals. I splurge occasionally and eat ice cream or pizza. Food is fuel. Yes, I love eating, but bottom line is, it's fuel. Before each meal, I ask myself "What does my body need?". Each morning, I make a protein shake with kale, 1/2 a banana, flax seed, fresh ginger, scoop of vanilla protein powder, water or milk, and cinnamon. I eat a high protein, relatively low carb (100-150g carbs) a day, sometimes 200g if I am doing lots of cardio. Everything I eat is "clean" - non processed, nothing low fat, nothing low sugar, just about everything I eat is perishable.

Let me know if you have any more questions - I'd love to help you. I am a certified personal trainer so I do know a few things. Plus, I research quite a bit and have experienced myself the power of what we put IN our bodies and what we are able to produce and how we can control our health.
 
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running4life

New member
Gorf - I am on disability too. I work part time and want to go back to working full time, just haven't yet gotten there. Taking it slowly. I can work 25 hours with the pay that I make and I barely get by, but I get just enough.

Here is a link to my blog:

http://www.findingtruth1.blogspot.com/

Haven't yet posted about my CF, but have been inspired to simply write about life. Feedback welcome.
 
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Melissa75

Administrator
Running4Life,

We're almost twins in eating/exercising philosophy. Well, I'm not putting in as many hours, but I am consistent with what I do and I've maintained an FEV1 at only about -5 to -10% of my previous baseline since culturing PA and steno.

I do 2-3 hours of cardio (zumba) a week, and 2-4 hours of anaerobic (rock climbing) a week.

I also eat as much unprocessed whole foods as I can, and I don't think as much in terms of calories as nutrients and fuel type.
In a typical day: granola yogurt banana, chicken rice kale hot sauce, fish, pasta, broccoli, snacks of chocolate, cheese, peanut butter. I cook meat almost every night because my husband is into it, but I reserve a couple of nights for the protein to be beans or fish.
I'm 5'4" and weigh btw 112 and 119 depending on exacerbations and holidays. I can get close to 120 if I'm on vacation, eating out a lot (no effort) and don't get sick. I have to eat every couple hours to maintain this weight. I don't have CF but I do have chronic diarrhea--I guess that is IBS? I haven't really explored the connection btw it and bronchiectasis. I just eat a lot of good foods and observe what sets me off--not fat usually. (I don't think it's comparable/severe like CF and being pancreatic insufficient, but I can relate to frequent bathroom emergencies and needing to take in a lot of calories.)

One thing I noticed since I stopped drinking alcohol almost 2 yrs ago is that I have more of an appetite in the evenings. I think it evens out from the reflux perspective, but I get more nutrients from food than I did from a couple of beers.
 
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PDC 4 EVER

Guest
I am a 42 yr old male wcf. My fev1 is down to 30% and I don't seem to know about half the stuff people are on or other treatments. I am not a typical cfer as I am 6 foot 3 (1.92cm) and 222lbs. Even though lf is poor I work full time have 6 yr old twins and am currently going to the gym 3 times a week and swim a mile before work on a Sunday. I wasn't diagnosed til 26 and I think alot of the damage was done before this but there doesn't seem much urgency around my treatment as I was told I'm you well for a port as I last had iv's in July 2011. Physio has mixed results for me and sometimes I wish j had more support!!!!! Thanks for the link!!!
 
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running4life

New member
Melissa75 said:
Running4Life,

We're almost twins in eating/exercising philosophy. Well, I'm not putting in as many hours, but I am consistent with what I do and I've maintained an FEV1 at only about -5 to -10% of my previous baseline since culturing PA and steno.

I do 2-3 hours of cardio (zumba) a week, and 2-4 hours of anaerobic (rock climbing) a week.

I also eat as much unprocessed whole foods as I can, and I don't think as much in terms of calories as nutrients and fuel type.
In a typical day: granola yogurt banana, chicken rice kale hot sauce, fish, pasta, broccoli, snacks of chocolate, cheese, peanut butter. I cook meat almost every night because my husband is into it, but I reserve a couple of nights for the protein to be beans or fish.
I'm 5'4" and weigh btw 112 and 119 depending on exacerbations and holidays. I can get close to 120 if I'm on vacation, eating out a lot (no effort) and don't get sick. I have to eat every couple hours to maintain this weight. I don't have CF but I do have chronic diarrhea--I guess that is IBS? I haven't really explored the connection btw it and bronchiectasis. I just eat a lot of good foods and observe what sets me off--not fat usually. (I don't think it's comparable/severe like CF and being pancreatic insufficient, but I can relate to frequent bathroom emergencies and needing to take in a lot of calories.)

One thing I noticed since I stopped drinking alcohol almost 2 yrs ago is that I have more of an appetite in the evenings. I think it evens out from the reflux perspective, but I get more nutrients from food than I did from a couple of beers.
Click to expand...

That is awesome! I am glad to hear you are taking control of your health. There are so many things in life we cannot control, but our response to them is in our control. I actually have to watch my weight (I don't like being above 118, just for how I look in my clothes and feel when I exercise). I am jealous of your rock climbing. I wish we had a gym around here as I LOVE it and haven't done it in years.
 
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Melissa75

Administrator
I was so happy when a climbing gym opened up in my area. I'd been a gymnast as a kid and climbing really satisfies a part of me I'd ignored for years.

I have the luxury of knowing kinda what I should weigh if I didn't have lung problems because I was pretty healthy until my late twenties, and I always weighed 116-120. And now I'm 38 and have had three kids, so I figure that in an alternate universe where my lungs hadn't become a problem, I'd certainly be north of 115 and probably north of 120.

My husband has offered to do this for me. For now, I enjoy the social aspects of the gym. Check it out though :)

Building a climbing gym in your garage
http://www.youtube.com/watch?v=cpd8Lyc0INs
 
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Melissa75

Administrator
PDC,

I think it's awesome that you exercise so much with an FEV1 of 30. Are you in the U.S.? My impression is that other countries don't offer the Vest as readily as they do in the U.S.
 
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PDC 4 EVER

Guest
No. I'm in London. Because its all on the NHS it's like getting blood from a stone. I've always exercised. Before the kids were born I was training to do a triathlon for the cf trust but my partner had a lot of problems with the pregnancy and had to stop. I don't think I could do it again!!!
 
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