Dr says: "You will know if something is there."
Posted , 8 users are following.
Hi all,
My doctor tells me to stop trying so hard to clear my lungs, because I will know if something is there.
Is that true?
Do you guys feel and know when there is something in your lungs and you should be clearing it out?
I really never feel anything, so I always think I have to keep trying and do a lot of physio often with zero results. It would be great if I could cut back on my physio, but I'm a bit scare to since I don't want to leave anything in there to fester.
Thanks,
Ida
0 likes, 17 replies
td3 ida44484
Posted
The only time I really "felt anything" was right before I was diagnosed. I had trouble breathing and chest pain. Went to get my heart checked out and it was fine, but they found out my lungs were not!
ida44484 td3
Posted
A respiratory therapist told me that if I am always clearing my throat, my body will automatically produce more mucus, so I should try not to clear my throat so often. I don't know if that might help.
Ida
jenny92570 ida44484
Posted
It feels like a crackling, sticky feeling when you breathe. Do you know how to do a huff? If you huff you will hear it and feel it bubbling away.
I have never not had mucus and find it very very difficult to clear to "dry". I didn't know you could have bronciectasis without mucus!
ida44484 jenny92570
Posted
Question to you: If you don't clear until you are dry, are you then getting a lot of infections or do you just clear it out later?
And how long is it safe to wait in between doing phyiso before it starts festering and causes an infection?
jenny92570 ida44484
Posted
I don't get many infections, maybe one or two a year. But my specialist is always telling me to do more physio. It was very frustrating because though I drink a lot of water, the mucus is very thick, huge in quantity and green. I found it hard to get up until I was given an iNeb for saline inhalation a few months ago. I found it helps a lot in thinning it all out but I still don't get the last dregs out. I've had to content myself with the the fact that for me, getting it all out is impossible and I've done everything I can.
I'm a bit concerned you will burst a blood vessel and tire yourself out a lot if you're doing physio that doesn't need to be done!
ida44484 jenny92570
Posted
Thanks for the help and the information about what I manage to bring up is probably normal lubrication.
Glad to hear that the Neb thing is working for you. It's always so great when we find something that can help our situation a bit.
Thanks again,
Ida
janet01076 ida44484
Posted
ida44484 janet01076
Posted
tabatha84296 ida44484
Posted
Tabatha
ida44484 tabatha84296
Posted
Yes, I do drink a lot of water and tea as well.
I wish I could be like you and just wait and see if it would come up by itself, but I'm afraid not to clear out anything that might be there.
Thanks for the encouragement. I will try to cut back on my physio and see how it goes. It sure would make my life a lot easier.
Thanks
tabatha84296 ida44484
Posted
T/
ida44484 tabatha84296
Posted
My first pulmonary doctor - the one who discovered my BX - was very bad in that she scared me so much. I don't think she knew very much about BX and she acted as if I was going to die any minute. She send me for all kinds of tests - even a PET scan, which I refused. She would call me up and tell me that one of my sputum samples - she had me do tons of them all the time - came back and it showed that I might have this extremely rare bug that only a handful of people had ever had and they were all dead- oh, or it could just be from the water in my mouth. Anyways, I finally told her how much her negativity hurt me and I fired her and now have a much better doctor. However, I think some of that fright is still in me and that is why I'm so afraid of leaving anything potentially harmful in my lungs.
However, thanks to all you guys and your great responses I feel like I'm coming to my senses and are cutting back on my physio. I also feel less scared about the whole thing.
So thank you to all of you on this great site. I appreciate you and all your help.
Ida
tabatha84296 ida44484
Posted
And we keep reading on this site about people who have had BX since birth or childhood - can u imagine? I bet they don't worry too much because they've got bigger things going on probably if they've had it that long. I'm more worried about picking up a pneumonia germ from somebody because that could really be serious the older we get.so I try to do what I can to be healthy and not worry about the sputum. When we're 95+ and unable to cough that might be the time we need a therapist and help getting it up. : ) With that I'll say goodnight.. You don't need to reply to this, Ida. I just write when I think of something. Hope it's useful.
Tabs.
ida44484 tabatha84296
Posted
You have such a great attitude and are of course totally right about not worrying. I always appreciate your input and you set such a great example for me, and maybe others, on how to handle our BX.
I guess you went through one of those "I don't know what I'm doing doctors."
It's not a fun experience. I wish they would say; "Hey, I really don't know much about BX so let me send you to someone who does."
I've finally found one of those doctors (Primary; not Pulmonary) and although she doesn't take my insurance, I gladly pay out of pocket to see her.
Have a wonderful day and thanks again for you great feedback.
Ida
Russell27NOLA ida44484
Posted
Hope this helps.
Best
Russ
ida44484 Russell27NOLA
Posted
Wow, you have such a great and easy method. So glad to hear that this is actually possible.
I also use the doggy style and a lot of huffing as well. I used to do physio over the bed, but it was just too hard. Doggy style on the floor is so much easier.
Thanks Russ,
Ida
Russell27NOLA ida44484
Posted
Keep me posted please. I can think I can see that we in our group have become a sort of "Megabrain" working the problem we all share.
Best
Russ