Colleen Young, Connect Director | @colleenyoung | Jun 3, 2020
Hi @thumperguy, you have me perplexed me with this post. It appears you were having late night musings. I assume you were shaking because you were using your percussion vest aka ole Thumper. Care to elaborate?
Yeah Colleen, I was later than usual getting my second “thump” of the day and that whimsical thought came along. I impulsively decided to post it. I tend to use humor to combat the drudgery, really the outrage of this damnable ailment hijacking an hour+ from my life every day
I wish it were just an hour or two. I hate it because of the weakness but I stay loyal to the procedures. Are you on 7%....I just switch up to it this week and hope it will make some difference. I thought I wouldn't make it through but today was much easier...tell me it's worth.
Flib, when I “advanced” to 7% the change was immediate and dramatic. Copious mucus production during, and for a while, following the”thumping” session accompanied during the session by sneezing. I’m definitely “sold on” 7% saline.
Yeah Colleen, I was later than usual getting my second “thump” of the day and that whimsical thought came along. I impulsively decided to post it. I tend to use humor to combat the drudgery, really the outrage of this damnable ailment hijacking an hour+ from my life every day
Hello Don and Flib! I hear you Don, about our time being 'hijacked'. I complained to my new dr at Mayo last week and confessed that I have neglected my last two months of inhaled toby treatments due to medicine fatigue. She took me off all antibiotics of which I have been on monthly since 2013. She said to try going without for awhile and see what happens. She did say to stay the course with albuterol and the inhaled saline. It was her opinion that good, dedicated, lung hygiene was the best thing we can do with this disease. Now that I am off of all antibiotics, I plan to be hyper-vigilant about my lung hygiene.
@windwalker - That's great news about stopping the antibiotics! I'm wondering if there are some new thoughts about MAC treatment fomenting in the medical community, because I met (virtually) with my pulmonologist this week, and she says she isn't even going to image my lungs until December unless I have a flare, even though we stopped the Big-3 in December while my cultures were still positive for MAC.
She even told me now I can stop levalbuterol unless my asthma flares - just lung clearance, with 7% saline only if the Aerobika alone doesn't clear. I'm staying with the saline for now, because it seems to keep things flowing and avoids the dreaded never-ending asthma attacks that I used to get before my MAC was treated.
I guess just like avoiding other illnesses, good hygiene may be the best course. Let's hope you can stay off the toby - constant antibiotics are so hard on the body and spirit.
Sue
Hello Don and Flib! I hear you Don, about our time being 'hijacked'. I complained to my new dr at Mayo last week and confessed that I have neglected my last two months of inhaled toby treatments due to medicine fatigue. She took me off all antibiotics of which I have been on monthly since 2013. She said to try going without for awhile and see what happens. She did say to stay the course with albuterol and the inhaled saline. It was her opinion that good, dedicated, lung hygiene was the best thing we can do with this disease. Now that I am off of all antibiotics, I plan to be hyper-vigilant about my lung hygiene.
Hi Terry and all! I believe the best thing I have done was to get off all antibiotics until I really need them. I feel so much better and no coughing or mucus. I am struggling with RA and it is really a daily struggle. I have pains that unbearable at times and it’s worse at night. I just got my plaquenil compounded and I hope this will help. I started about a week ago so I’m waiting. Also it’s not covered by insurance which is a bit crazy. The cost is 86$ monthly. But I’m willing to do it if it works. Anyone have any information on RA meds that works please let me know. Thanks and stay safe, hugs Rita.
America.….. are you saying you are not coughing up tons of phlegm when off antibiotics? I'm on them and I cough something terrible. Sputum says pseudomonas and I've been on tobramycin over a year with no relief. Has anyone else used toby and not been helped with it? Everyone I've spoken to feel it is a wonderful drug but it hasn't helped me. I'm now so short of breath that I think I might keel over. Has anyone found anything to stop the cough and phlegm production? If I didn't cough, I think I would feel close to okay. Thanks for your help
No I’m not! Talk to your doctor and see if you ok to get off Toby. Since I got off I’m doing really well. But don’t do anything until your dr day so. I only use albuterol and I am doing good. Maybe someday I may need but not for the moment. My struggle is with RA!
Hello Don and Flib! I hear you Don, about our time being 'hijacked'. I complained to my new dr at Mayo last week and confessed that I have neglected my last two months of inhaled toby treatments due to medicine fatigue. She took me off all antibiotics of which I have been on monthly since 2013. She said to try going without for awhile and see what happens. She did say to stay the course with albuterol and the inhaled saline. It was her opinion that good, dedicated, lung hygiene was the best thing we can do with this disease. Now that I am off of all antibiotics, I plan to be hyper-vigilant about my lung hygiene.
Connect
Connect
Like
Helpful
Hug
Hi @thumperguy, you have me perplexed me with this post. It appears you were having late night musings. I assume you were shaking because you were using your percussion vest aka ole Thumper. Care to elaborate?
-
Like -
Helpful -
Hug
1 ReactionYeah Colleen, I was later than usual getting my second “thump” of the day and that whimsical thought came along. I impulsively decided to post it. I tend to use humor to combat the drudgery, really the outrage of this damnable ailment hijacking an hour+ from my life every day
I wish it were just an hour or two. I hate it because of the weakness but I stay loyal to the procedures. Are you on 7%....I just switch up to it this week and hope it will make some difference. I thought I wouldn't make it through but today was much easier...tell me it's worth.
Flib, when I “advanced” to 7% the change was immediate and dramatic. Copious mucus production during, and for a while, following the”thumping” session accompanied during the session by sneezing. I’m definitely “sold on” 7% saline.
To what do you attribute your weakness?
Don
-
Like -
Helpful -
Hug
1 ReactionHello Don and Flib! I hear you Don, about our time being 'hijacked'. I complained to my new dr at Mayo last week and confessed that I have neglected my last two months of inhaled toby treatments due to medicine fatigue. She took me off all antibiotics of which I have been on monthly since 2013. She said to try going without for awhile and see what happens. She did say to stay the course with albuterol and the inhaled saline. It was her opinion that good, dedicated, lung hygiene was the best thing we can do with this disease. Now that I am off of all antibiotics, I plan to be hyper-vigilant about my lung hygiene.
-
Like -
Helpful -
Hug
1 Reaction@windwalker - That's great news about stopping the antibiotics! I'm wondering if there are some new thoughts about MAC treatment fomenting in the medical community, because I met (virtually) with my pulmonologist this week, and she says she isn't even going to image my lungs until December unless I have a flare, even though we stopped the Big-3 in December while my cultures were still positive for MAC.
She even told me now I can stop levalbuterol unless my asthma flares - just lung clearance, with 7% saline only if the Aerobika alone doesn't clear. I'm staying with the saline for now, because it seems to keep things flowing and avoids the dreaded never-ending asthma attacks that I used to get before my MAC was treated.
I guess just like avoiding other illnesses, good hygiene may be the best course. Let's hope you can stay off the toby - constant antibiotics are so hard on the body and spirit.
Sue
Hi Terry and all! I believe the best thing I have done was to get off all antibiotics until I really need them. I feel so much better and no coughing or mucus. I am struggling with RA and it is really a daily struggle. I have pains that unbearable at times and it’s worse at night. I just got my plaquenil compounded and I hope this will help. I started about a week ago so I’m waiting. Also it’s not covered by insurance which is a bit crazy. The cost is 86$ monthly. But I’m willing to do it if it works. Anyone have any information on RA meds that works please let me know. Thanks and stay safe, hugs Rita.
America.….. are you saying you are not coughing up tons of phlegm when off antibiotics? I'm on them and I cough something terrible. Sputum says pseudomonas and I've been on tobramycin over a year with no relief. Has anyone else used toby and not been helped with it? Everyone I've spoken to feel it is a wonderful drug but it hasn't helped me. I'm now so short of breath that I think I might keel over. Has anyone found anything to stop the cough and phlegm production? If I didn't cough, I think I would feel close to okay. Thanks for your help
No I’m not! Talk to your doctor and see if you ok to get off Toby. Since I got off I’m doing really well. But don’t do anything until your dr day so. I only use albuterol and I am doing good. Maybe someday I may need but not for the moment. My struggle is with RA!
Teri, I trust you're taking dietary measures to support your gut microbiota in face of the siege it been under since 2013. Don