Well since I don't really hang out here anymore and I know there are a few on here who don't follow the "I hope you get hit by a cement truck filled with angry clowns" line of thinking, I thought i'd share a health/life update.
A little over a year ago (the follow up hospital checkup was a week ago, and it was the exact one year anniversity) I was @ mid 90's FEV wise, and my small airways were in the mid to low 70's. I have been at my current job/post for almost a year and a half, and I do a ton of walking. I noticed I would have bleeds (have always been a bleeder since my early 20's) whenever I exerted myself heartrate/blood pressure wise (sex, masturbation, sprinting, etc). It got progressively worse to the point it was seriously putting a crimp in my quality of life. Well I started to do my vest therapy twice a day religiously for about 2 months before my checkup. I would wake up and be very chunky and productive, do vest, be clear till i got home at night and then be right back to how I am when I wake up. It was like the movie ground hogs day. I had slacked on my supplements for quite a while mostly due to laziness and not having too much time to go and refill them (I work 40-60ish hours a week, and at times do back to back 16 hour shifts all with heavy exertion), and that included oregano oil. Aside from when my sister had some and id put some under my tongue, I didn't fully use it anymore due to above reasons.
I think overall, that was probably the biggest contributing factor to my decline. Anyways, I hit the vest religiously plus my regular aresols like normal, and started back up on fish oil and strong B vitamins. I also got way serious about lifting weights again and now ive tacked on a good deal of muscle and generally way bulked up.
I went to the clinic and he put me on keflex and finally on zithromax. I generally avoid prophalactic antibiotics due to eventual resistance, but i learned what zithromax did, and I knew I had to lower my staph colonization, so i grudgingly accepted the treatment of the oral meds. Before that treatment even started, my PFT's were off the charts, especially considering i'm a 36 year old CF patient who has had some real serious bouts with the disease (I wouldnt consider myself mild, remember I had gone down to 60% and massive hemoptysis in the past). I don't have the paper in front of me, but my FEV's were all 99 and 98%, with my smalls @ 80%, and my very bottom number @ 134%.
I understand all of our mutations act differently, and I know I have delta f508 and one other "weird one" (my doctors words), but I would just like to tell you guys not to give up. With proper exercise, VEST USEAGE, supplements, and lifestyle, and some luck, you can really do yourself some good and maintain a healthy baseline.
To me the vest is almost magical in how well it can clear me up and make me feel. I am currently experimenting with large doses of fish oil, and going to slowly get back on the serious supplement train. I also think lifting weights is extremely important especially for male cf's. I am able to channel my anger when I lift, and it feels like I burn a pool of constantly filling negativity and it makes me more at ease mentally.
I feel I am a living example of what you can do with your health if you have CF and determination/discipline. I asked the PFT tech if he didn't know what I had, what would he think of my PFT's. He said I would think they were from a non CF normal person. Considering all that I have been through, I seriously think strong supplementation and care and exercise *CAN* repair your bodies tissues, atleast to some extent. You can go a long way without the need for antibiotics, but when you need them and your normal care routine won't help, it's better to take them and stay alive with quality of life than to ignore their use. But, I was able to generally not require them (except for collistin nebs) with strong supplementation.
Take care and remember, all that we need to help maintain our health and keep us well is here already, and grows out of the ground/comes out of the ground.
/proceeds to get hit by cement truck filled with angry clowns.
A little over a year ago (the follow up hospital checkup was a week ago, and it was the exact one year anniversity) I was @ mid 90's FEV wise, and my small airways were in the mid to low 70's. I have been at my current job/post for almost a year and a half, and I do a ton of walking. I noticed I would have bleeds (have always been a bleeder since my early 20's) whenever I exerted myself heartrate/blood pressure wise (sex, masturbation, sprinting, etc). It got progressively worse to the point it was seriously putting a crimp in my quality of life. Well I started to do my vest therapy twice a day religiously for about 2 months before my checkup. I would wake up and be very chunky and productive, do vest, be clear till i got home at night and then be right back to how I am when I wake up. It was like the movie ground hogs day. I had slacked on my supplements for quite a while mostly due to laziness and not having too much time to go and refill them (I work 40-60ish hours a week, and at times do back to back 16 hour shifts all with heavy exertion), and that included oregano oil. Aside from when my sister had some and id put some under my tongue, I didn't fully use it anymore due to above reasons.
I think overall, that was probably the biggest contributing factor to my decline. Anyways, I hit the vest religiously plus my regular aresols like normal, and started back up on fish oil and strong B vitamins. I also got way serious about lifting weights again and now ive tacked on a good deal of muscle and generally way bulked up.
I went to the clinic and he put me on keflex and finally on zithromax. I generally avoid prophalactic antibiotics due to eventual resistance, but i learned what zithromax did, and I knew I had to lower my staph colonization, so i grudgingly accepted the treatment of the oral meds. Before that treatment even started, my PFT's were off the charts, especially considering i'm a 36 year old CF patient who has had some real serious bouts with the disease (I wouldnt consider myself mild, remember I had gone down to 60% and massive hemoptysis in the past). I don't have the paper in front of me, but my FEV's were all 99 and 98%, with my smalls @ 80%, and my very bottom number @ 134%.
I understand all of our mutations act differently, and I know I have delta f508 and one other "weird one" (my doctors words), but I would just like to tell you guys not to give up. With proper exercise, VEST USEAGE, supplements, and lifestyle, and some luck, you can really do yourself some good and maintain a healthy baseline.
To me the vest is almost magical in how well it can clear me up and make me feel. I am currently experimenting with large doses of fish oil, and going to slowly get back on the serious supplement train. I also think lifting weights is extremely important especially for male cf's. I am able to channel my anger when I lift, and it feels like I burn a pool of constantly filling negativity and it makes me more at ease mentally.
I feel I am a living example of what you can do with your health if you have CF and determination/discipline. I asked the PFT tech if he didn't know what I had, what would he think of my PFT's. He said I would think they were from a non CF normal person. Considering all that I have been through, I seriously think strong supplementation and care and exercise *CAN* repair your bodies tissues, atleast to some extent. You can go a long way without the need for antibiotics, but when you need them and your normal care routine won't help, it's better to take them and stay alive with quality of life than to ignore their use. But, I was able to generally not require them (except for collistin nebs) with strong supplementation.
Take care and remember, all that we need to help maintain our health and keep us well is here already, and grows out of the ground/comes out of the ground.
/proceeds to get hit by cement truck filled with angry clowns.