Hi Vicki,
I know what you are feeling, I was the same way in 2002 when my FEV1 went down to 23%, it was awful! Pretty much all the same symptoms you are experiencing. I live in the Cayman Islands and they don't do lung transplants here so I went to Canada both for a checkup and to be evaluated for a lung transplant, which I was told couldn't be done there anyway because of how their laws or whatever are. Long story short I was extremely under weight also and the doctors scared the bajeebeez out of me with the state I was in, they wanted to give me a G- tube and all sorts off things and I declined the g-tube because I didn't want to mess up my nice abs, I know stubborn. I decided I will do all I could and give it my all to get back in some sort of manageable/livable condition. I took up weightlifting to try to put on weight and to give myself the much needed exercise. It was hell, people looked at me all weird in the gym and I could only imagine what they were thinking "why the hell is that guy in here he needs to be home lying in the bed with a tub of ice cream" I was a walking toothpick. Every bit I did I caughed like crazy till I felt like my head was going to burst from the pressure not to mention the feeling like I was going to pass out. I pushed and pushed and eventually my appetite started increasing which was a good sign too cause I was really getting sick of forcing myself to eat. I mean I would litterally force down food, as much as I could and right away go to bed so I wouldn't puke it up. I would also set my alarm in the middle of the night and keep a shake beside my bed - wake up and down it fast and go right back to sleep cause I was desperate to gain some weight, I can't even explain how the doctors scared the crap out of me with the condition I was in! Little by little I also began to put on some weight and was coping alot better with the exercising, probly more so because it was making me caugh up ALOT of crap that was down there, this went on for a loooong time! Anyway I'm now back up between 38-40% FEV1 and I have competed in 2 bodybuilding shows and I feel due to the rigorous exercising I am probly funtioning as if my FEV1 were higher, my girlfriend has immotile cilia syndrome and her lung function is in the 60's and she has a hard time keeping up with me with almost any activity.
I tell you this hoping to keep you motivated, even though it's really hard, do as much exercise as you can even if it's just a minute or two then couphing fit - spit -rest and repeat just do it, get an in house exercise bike and ride with your spit pot beside you or something, I found that it was more to do with all the crap that was in my lungs that was causing me to not be able to sleep well and have so many caughing fits. Another thing I found was that I couldn't lay on my back for too long before I got short of breath or had a caughing fit. I founf that laying on my stomach was alot more easy on my breathing and I didn't have as many coughing fits, and at that point though it never stopped it completely any extra time resting was a blessing! I ended up doing it so much that I almost always sleep on my stomach now and even now I still notice that I won't sleep as well on my back. Try it it may work for you too.
And I'll keep you in my thoughts and prayers. Best of luck to you and keep up the fight.
I know what you are feeling, I was the same way in 2002 when my FEV1 went down to 23%, it was awful! Pretty much all the same symptoms you are experiencing. I live in the Cayman Islands and they don't do lung transplants here so I went to Canada both for a checkup and to be evaluated for a lung transplant, which I was told couldn't be done there anyway because of how their laws or whatever are. Long story short I was extremely under weight also and the doctors scared the bajeebeez out of me with the state I was in, they wanted to give me a G- tube and all sorts off things and I declined the g-tube because I didn't want to mess up my nice abs, I know stubborn. I decided I will do all I could and give it my all to get back in some sort of manageable/livable condition. I took up weightlifting to try to put on weight and to give myself the much needed exercise. It was hell, people looked at me all weird in the gym and I could only imagine what they were thinking "why the hell is that guy in here he needs to be home lying in the bed with a tub of ice cream" I was a walking toothpick. Every bit I did I caughed like crazy till I felt like my head was going to burst from the pressure not to mention the feeling like I was going to pass out. I pushed and pushed and eventually my appetite started increasing which was a good sign too cause I was really getting sick of forcing myself to eat. I mean I would litterally force down food, as much as I could and right away go to bed so I wouldn't puke it up. I would also set my alarm in the middle of the night and keep a shake beside my bed - wake up and down it fast and go right back to sleep cause I was desperate to gain some weight, I can't even explain how the doctors scared the crap out of me with the condition I was in! Little by little I also began to put on some weight and was coping alot better with the exercising, probly more so because it was making me caugh up ALOT of crap that was down there, this went on for a loooong time! Anyway I'm now back up between 38-40% FEV1 and I have competed in 2 bodybuilding shows and I feel due to the rigorous exercising I am probly funtioning as if my FEV1 were higher, my girlfriend has immotile cilia syndrome and her lung function is in the 60's and she has a hard time keeping up with me with almost any activity.
I tell you this hoping to keep you motivated, even though it's really hard, do as much exercise as you can even if it's just a minute or two then couphing fit - spit -rest and repeat just do it, get an in house exercise bike and ride with your spit pot beside you or something, I found that it was more to do with all the crap that was in my lungs that was causing me to not be able to sleep well and have so many caughing fits. Another thing I found was that I couldn't lay on my back for too long before I got short of breath or had a caughing fit. I founf that laying on my stomach was alot more easy on my breathing and I didn't have as many coughing fits, and at that point though it never stopped it completely any extra time resting was a blessing! I ended up doing it so much that I almost always sleep on my stomach now and even now I still notice that I won't sleep as well on my back. Try it it may work for you too.
And I'll keep you in my thoughts and prayers. Best of luck to you and keep up the fight.