trouble breathing
Posted , 10 users are following.
Does anyone with Bronchiectasis have trouble breathing on/off throughout the day? (Like if you were trying to breathe with a small child sitting on your chest) I have this every day.
0 likes, 29 replies
DebbieRV retirednana
Posted
24/7 ,, sometimes feels like I'm breathing thru a straw 😦
retirednana DebbieRV
Posted
thank you! its oddly comforting to know Im not alone!
DebbieRV retirednana
Posted
24/7 ... gets worst later in the day.. feels like I'm breathing thru a straw. Or sometimes I gasp for air....... 😦 couph all day too.
aitarg35939 retirednana
Posted
Yes, especially if i've been skipping my nebulizers.
retirednana aitarg35939
Posted
Which I got tired of using..... no wonder. Darn it . Guess Im dragging it out. Im so sick of being sick.
aitarg35939 retirednana
Posted
It is a royal pain and consumes my day but without it I am coughing non-stop yet unable to get the gunk I can feel up & out. Miss enough treatments and I start feeling compromised in breathing.
I do 3 neb meds twice daily, 2 of same neb meds once, and 1 of them once more. Do my Smartvest twice, following each 3 med treatment. I have a hard time getting out of the house before noon. The med i'm supposed to take 4 times also comes in an inhaler. Less effective but sometimes a girl's gotta do what a girl's gotta do ;-p
Schatz aitarg35939
Posted
Very interesting as I have a hard time bringing up the gunk. I dont have a Smartvest but was wondering if I should try it. So far my doctor doesnt think it is necessary. I do take a nasal spray at night or in the morning and take musinex at night to thin out the mucus. I hate the brand name as it makes me feel sick to my stomach so I found a generic pill that is cheaper and works great. The spray is by Hi-Tech Pharmacal. All works if I do everything. I know what you mean. If I have a tiny bit of mucus in my lungs and cant get it out, I don't even get up. Its like walking in quick sand.
Kate
Schatz aitarg35939
Posted
Give musinex a try at night and a nasal spray to loosen the phlem. Have they checked for plurasy ....? Sorry for spelling. It seems like you are doing a lot to get something up. So sorry.
aitarg35939 Schatz
Posted
On orders of my pulmonologist, i take 1200 mg of mucus thinner at night & in the morning- 3 tablets each time. I'm with you on that name & the expense! It saves money for me to join Costco & buy Mucus Relief, which is the same name used for cheap tablet guafenisin in the '80s. $10.99 for 2 months at my dosage, which would last you a year at your dosage. But I have another condition which makes my mucus much thicker, stickier & dryer, and also makes the passageways dryer & stickier. Autoimmune disease. I cannot take steroid pills for more than 3 days, so i use the advair plus the 3 kinds of neb meds.
There is a lot of positional drainage that helps many people, most of which i cannot do. I live alone so there's no one else to do what the vest does, i.e., pound my chest at great length.
You might ask your doc about increasing your mucus thinner to a.m. & p.m., 1 each. The vest is stupid expensive & in the States requires an Rx. It also needs a pro to decide what settings are appropriate. I would suggest going online to look up huffing & positional drainage.
When you say spray, do you mean an inhaler?
graham23402 aitarg35939
Posted
Dear 35939,
The simplest way to remove mucus is, take several swallows of water, which thins it, lean well forward and breath in, then cough. Works for me. Graham Hopkin 2342
dancing_queen retirednana
Posted
hello, that is a very good description and, yes, I do too. It feels like you just cant get enough air into your lungs.
retirednana dancing_queen
Posted
Im a retired nanny, so I KNOW how it feels to have a small one resting on top of your chrst ..... im not very big myself! 藍
kathryn01057 retirednana
Posted
I was finally told that difficulty breathing could be caused by spasms in vocal cords which have been stressed over the years by the "bronchiestasis cough". When this happens, I visualize my vocal cords relaxing.
Schatz kathryn01057
Posted
I typed a long text but the send was not available for some reason. After going to the ER for asthma, which I do have, my lung dr sent me to a voice doctor. Everyone thought it was anxiety. Who wouldn't be when no one believes you. Looking down my throat he said that my vocal cords were constantly vibrating even when I didn't feel it....therefore exhaustion. I'd run out of air in the middle of a conversation and about passed out. It is like running a race and you haven't even moved. There are vocal cord exercises and I guess that is what I'll be doing next even though I don't feel the vibrations at all anymore the fatigue I feel is ridiculous and most likely due to the voice box after ruling out everything else . Terrific, Another doctor! You may want to go to that type of doctor. Kate
amkoffee retirednana
Posted
I am not trying to be flippant or rude but isn't that definition of bronchiectasis ? I was just diagnosed a few months back and it was a few months before that when my problem start happening . but the one thing I found consistent is that when I had these feelings my oxygen saturation was good in the low-90s but still good enough. so this was very confusing to me. And it made the doctors dismiss my feelings of
retirednana amkoffee
Posted
wheres the rest of your post? And yes, i dont understand how our oxygen can be fine and we still feel "labored" breathing. i live close to the CLEVELAND CLINIC 4 hrs away, and would love to visit a pulmonologist there to explain things better. I have other docs there- they are a teaching hospital and ate used to explaining things.
DebbieRV amkoffee
Posted
no,,, . my mother and aunt have bronchiectasis and they hardly cough and have never felt it hard to breathe. Both do not use any puffers. I've had mine diagnosed 12yrs ago. Was found after I had Pneumonia. I hardly coughed.. mine was "dry bronchiectasis" . As the years have gone by ,,, my cough and breathing are getting worst. 😦
retirednana DebbieRV
Posted
no cough? thats wild! my cough is dry- but boy do I COUGH.
aitarg35939 amkoffee
Posted
The straw description is commonly used in the States for COPD, especially I think for asthmatic bronchitis and chronic bronchitis. Some of us here had those DXs long before BX. I don't know whether that description is used for bronchiectasis.
DebbieRV aitarg35939
Posted
my description of "feels like I'm breathing thru a straw" is just my personnel description.... could say " feel like I'm breathing with a pillow over my face " " bricks on my chest" "coughing up a lung " 😃
aitarg35939 DebbieRV
Posted
It's very apt and so many people come up with the same description that you can google the phrase. Still original to you in your situation. Docs here sometimes ask patients if that's how it feels when they breathe.
amkoffee retirednana
Posted
I really don't know where the rest of my statement went. and I even proof read my posts before I press send so it must have disappeared when I pressed send. however looking at it I don't think I was missing more than one or two words. the message I was trying to get across was that the doctors dismissed my feelings of being unable to breathe since my lungs sounded clear to them. And for most of the Year prior to my diagnosis this was the case. several different doctors listen to my chest and said that I sounded clear leading them to the conclusion that it must be allergy related. I think you would do good by going to a pulmonologist at the Cleveland Clinic. I live in Wichita Kansas and I wish we had a good medical Hospital like the Cleveland Clinic or the Mayo Clinic, close to home. the closest thing we have is Kansas University medical school about 4 hours away. but since I suffer from bad back pain I can't make that drive.
retirednana amkoffee
Posted
i HATE when doctors act like all is cherry pie because your lungs (and I QUOTE HERE) "sound nice and clear"
My comeback is " i think you ought to know they were clear at another doctors office and that night I coughed up blood and was diagnosed with pneumonia at the ER (every word is true)
JUST SO THEY LEARN that sometimes with BX clear soundless lungs means NOTHING. If they dont learn it in med school, we MUST teach them.
aitarg35939 retirednana
Posted
My pulmonologist tells me to inhale/exhale deeply through the mouth rather than the nose whenever docs listen to my breathing with a stethoscope. This is also what he always teaches his shadow/student, to tell the patient to breathe that way. It does tend to display my rattle better, especially for docs over 45 who may have beginning hearing loss.
Amkoffee, I guess you can't make it over to the Jewish Lung Clinic in Denver, either. They're ranked #1 for pulmonology in the country by many docs. I'm about 800 miles further from them than you are & haven't been able to think about making the trip.
amkoffee retirednana
Posted
I am fed up with doctors telling me I sound good and clear. and I get that not just from my GP but from my pulmonologist as well. and I really want to yell at them and tell them I am not clear, I can feel it in there and everytime I cough I can hear it in there.
Schatz amkoffee
Posted
I was never told about the vocal cords involvement at all. My oxygen level was good on my finger around 97 normal. But my brain wasn't getting it. Everything here in the USA seems to be concentrating on COPD and we don't have much information or help on Bronchiectasis.
Schatz DebbieRV
Posted
Hi you may want to have your vocal cords checked out. They found my bronchiectasis finally when I took a treadmill stress test. That almost killed me! My internist said you passed with flying colors but you are working too hard to breathe. Sent me to a lung doctor. You would think the doctor giving me the stress test would have noticed that I was almost flying on the dang thing. Also they dont hear it if you have a little plug in your lungs for some reason. I found that the nasal spray and musinex helped thin the junk and it finally comes out. In the mean time I'm worthless...no stamina. Sometimes I bang on my chest too to loosen it up. Drink a lot of water too. I hope this helps. When I first started I had a lot of mucus but I had also been in a fire so I had a lot of smoke in my lungs. Over the years there is less mucus but I know when it is there and go after it. My sister in law smoked so she always has tons of crap to cough out.
Best wishes....
Schatz
Posted
Also I forgot to mention that I take singular before bedtime. Sometimes I think I'm just allergic to myself. This is work. I'm very glad I never smoked. I was a premie in 1942 and there wasn't an incubator so I am lucky that I've lived pretty well. My siblings both had heart problems. In first grade I tested positive for TB.....We are lucky this disease has been identified because it is a fairly recent discovery. So mine is a birth defect or damage from TB.
Having problems sending messages tonight...
graham23402 Schatz
Posted
Dear Schatz
you are quite correct about the info part. It took some months to sort me out and get any treatment.