anyone have problem with blockagae?

M

Matt31

Guest
I just started the vest an only had the acopilla for past 15yrs an just started vest couple wks ago.Im normally pretty healthy. I dont feel sick,my white count isnt high, an no fevers. I can feel it in the center of mt chest like popping everytime i breathe. They found a spot on left side, said it could be early ammonia. Or fluid build up. Ive never been this bad breathing. They wont do a scope to c if its blockage. But when i do get stuff up i can breath better. When i do the vest it just keeps bringing up more an just seems to get stuck again. Anyone ever have this or any help please!!!!
 

scarecrow

New member
Sounds like the vest is working. Ask your Dr about Mn. Protocol if you aren,'t already using it. That will help to clear your lungs much quicker.
 

Printer

Active member
Matt:

When I vest I also nebulize a 7% sailine solution. This helps to loosen the mucus and make it easier to bring up. Talk to your CF Specialist about this.

Bill
 

LittleLab4CF

Super Moderator
Considering the novelty of your complaint, get in touch with your pulmo ASAP. You sound like you know what's going on, a larger airway blockage sounds right? If the vest is loosening something deep, maybe blocking a bronchi, as frightening as it is, the plumbing just gets larger and less harmful on the path up and out of the lungs. You may already be nebulizing hypertonic saline, if not, it helps thin mucus making it much easier to cough up. If you do use it, consider doing it more often.

If peace of mind is not immediately forthcoming purchasing a pulse - oxygenation finger thingie (meter), available at pharmacies will allow you to monitor your oxygen percentage. Home medical equipment for CFers probably would benefit most people over time. Several months back my blood pressure went weird and subsequently bought a blood cuff. They don't give the stuff away but it is virtually doctor office quality.

LL
 
M

Matt31

Guest
Needless to say im in the hospital, the doc said he would like to try iv an alot of chest pt to get it cleared up. This is the 4th time its happenend. Ive heard alot of peep say doing a bronc helps alot. For sum reason he is against doing it. Now he isnt a cf doc. He says thay if they do a bronch that it only lasts a couple of days, now ive heard completely different on that. Anyone know bout that? I am on hypertonic as well
 

Vampy

New member
Been having blockages for years, whenever I have one, I just call my clinic and they call me in Go Lightly. I hate that stuff UGH!
 

Melissa75

Administrator
Bronchoscopies are great for a lot of different indications, but they have their own risks--infection and bleeding being the highest. As with all the meds and procedures, the benefits have to outweigh the risks. Hardcore chest percussion, postural drainage, inhaled mucolytics, IV abs ARE probably more effective and less risky at this point than a bronchoscopy. If they fail to improve things, then your dr will probably do a bronch.

Have you had a CT Scan ever/recently? Perhaps that would be something that could uncover what's going on...if you have a fungus ball or something.

Here is a link of the risks (scroll down).

http://www.nlm.nih.gov/medlineplus/ency/article/003857.htm
 
M

Matt31

Guest
Melissa 75 have you had this be4. Ive been telling my docs all those symptoms of that for prob 2yrs now. My be gross but it my left side an its like i cant.breath throw my nose. I constantly get these dry an huge pieces in thier with blood, not sont. The pain an now theres two holes on each side of my nose. Any help would be great
 

LittleLab4CF

Super Moderator
Just so this segue is OK, because this started out with a blockage of the bronchi in the LUNGs, but if you actually have a fungus ball in your nose, get it to your doctor ASAP. As terrible as virus's and bacterial infections are, molds are hard to kill without killing healthy tissue. How do you know they are fungus balls?

For openers, repeated infections cause blockages and holes in the lungs and ENT (Ears, Nose and Throat) area. A hole through the nasal septum is almost a CF right of passage. If you have holes rotting through your sinuses and possibly nasal septum, it is past time to be seeing your ENT specialist. People blow off chronic head infections as if they can't kill you. How often a sore throat, ear infection or sinusitis has turned into meningitis or something equally bad, has a lot to do with how much time you have an infection so close to the blood/brain barrier.


I don't know of any localized fungus infections, the few people I have known with fungus infections, beyond simple diaper rash, have systemic fungus infections like histoplasmosis, most often from exposure to birds, bats and rodents. It was once known as "caver's disease" contracted from bat droppings. Some time back a group of us were trying to dig out a sand pipe between two adjacent caves. We were very deep in one cave digging while another group dug from another cave, near its entrance. Centuries before, bats had inhabited this cave entrance and ten people contracted histoplasmosis from the ancient sands. In 1968, there was exactly one oral anti-fungal drug to treat this infection. A few who contracted histo, perished from the disease.

An ENT can rebuild and cover over any and all holes in your head. If you really are blowing out fungus balls, don't waste a minute. Get yourself and a fungus ball to your CF specialist, or Alergist.

LL
 

Melissa75

Administrator
Matt, I've never had a fungus ball, just have heard of them here. People with aspergillus, I think. Bloodwork for the antibodies or sputum cultures (I can't remember if you said you had those) would show that if you have it.

My CT scans show nodules that are likely "mucoid impactions." Sounds like an asteroid or something. The biggest one was in an area that I did happen to feel discomfort--only achiness though. I do get SOB twitchy when mucus moves, but not excessively and I am on symbicort for these issues--long acting bronchodilator and inhaled steroid.

Do you use sinus washes? A lot of stuff comes out with those and you feel better. When my sinuses act up I even do one in the middle of the night is that waking up in the morning isn't brutal.

BTW when I started using the vest, I coughed up a lot of what I can only describe as angel hair pasta. :)
 
M

Matt31

Guest
Thanks guys, i finally pushed the doc to get me a ent appt. This hospital stay has been the worst ever. I aslo think i have found away for me to get back into Pittsburgh cf clinic where i use to go, til insurance. So im really happy.it will be the first time back at a actual cf center in prob 10 yrs. Thanks for all the help. When your trying to do it on ur own. I hate when they dont listen.
 
Top