tracheal bronchial malasia

Does anyone share this disease or have information on it? I was diagnosised with this disease last summer and it has been quite miserable to live with. Tracheal bronchial malasia is where your airways collapse once you breathe out.

Report post

10 replies. Join the discussion

My nephew just got diagnosed with this today and he has been sooooo sick for the last year. The doctor says that there is a possibility of implanting a stent to prevent this but only if it is life threatening...do you know of anything to do to alleviate the effects without the surgery...we are desparate

Report post

My airways collapse and a couple of tips my doc told me are, exhale with pursed lip breathing, and play a kazoo, it creates the same benefit.

Pursed lip breathing is when your lips are like whistling and it holds the back pressure so the airways can't collapse. It gets worse when you do things too quickly, so slow down, walking, talking,etc.

Different things trigger and make it worse, chemicals on newspaper, perfume, cleaning agents, laundry soap, pollen, exhaust, cooking odors, smoke, cold air, hot air, dry air, humid air.

Wheezing will get loud and easy to hear inhaling and exhaling, then it becomes a struggle to inhale and exhale.

You didn't say how old your nephew is or what else is going on in his lungs with it. Depending on what else he is dealing with, there are other sources on line for ideas.

I hope this helps some.
TT

Report post

that definately helps...i so appreciate your quick response...My nephew is 4 years old. He just moved to springville utah from las vegas and ever since the move, he has been significantly weaker and gets sick much more often. From what you said in your reply, i wonder if it may be something in the air or something in their new house that is contaminating the air he is breathing. I called my sister this morning and told her what you said and she has felt like maybe that could have been a cause for a while now...owing to the fact that the symptoms got so much worse upon their move. Her husband is in law school right now but is getting near graduation and they would move anywhere for their little boy to have a normal life without all of these problems...I will ask my sister what some of the other lung problems he is having and see if we can't narrow this down a little more....thank you so much for your help...you have no idea what it means to our family. Thank you so.

Report post

I'm glad it could help. It is so scary when our little ones struggle.

Report post

My apologies. I just saw your post. I had the y-stent done as well as the permanent stent done (bronchoplasty surgery) where they rebuilt my airways. Both of the surgeries proved unsuccessful for me. My doctor ordered a couple of plastic devices for me to use when I start experiencing an attack. They also have tried medications like lyrica and gabentien(sorry spelling may be little off) as well as many inhalers. I wish that I could tell you something that has really benefited me but I cannot at this time. :(. I hope that your nephew will feel better soon. -fac-

Report post

Hi I have bronchial & trachial malasia I'm 60 cough all the time testing has shown it closes 94% having temp stents put in on 3-29-10 and at that time they will leave them in for about 3 weeks and secide id I'm a canidate for meshing. I'm scared to death as I'm a J W. and I do not take blood but the Drs at B I hospital in Boston are ok with it.ant thoughts

Report post

I have both Bronchial & Trachial Malaisa Mon 3/29 I' having temp stents put in at Beth Isarel Hospital in Boston Ma by a well reknow Dr Ernst,after this is in a few weeks they will decide if I'm a canidate for meshing. my throat closes up 95% when I cough always short of breath when I do anything I'm 60 yr old

Report post

I was wondering how your procedure went. I am 36 and developed trachial bronchial malasia almost 3 years ago. My air way closes almost completely on the right side just below the upper stem. I have undergone a lot of testing, including 4 different stents. The last of which was custom made and was my last option. It did stay in place the longest, but after about 3-4 months it would move. It finally was removed for good a couple weeks ago when it kept migrating into my trachea. I was told there is no other option except for maybe the mesh procedure that is done in Boston. Do you have any information about it? Thanks...

Report post

I had more phelm with stents was on 2400 mg mucinex a day thought I would die no stents now but have a nebulizer with albuterol sulfate and mycomist goint to a reg pulmony Dr end of month. The Dr who put my Stents in is a Dr Armin Ernst At Beth Isreal Hospital in Boston He is suppose to be tops he also teaches. Holding out for now on surgery

Report post

my daughter has broncho malasia she's 4 months old. She has a tracheostomy and is on a ventilator. As far as i know its the only thing in our area that they do for broncho malasia. I can say that as far as we know that when the broncho tube is floppy that it doesn't get air in that airway and collapses. With the trach and ventilator it keeps pressure pushed through that airway to keep it open so the cartilage will develop. Once it develops than the ventilator comes off than once the child is able to breathe on there own completely the trach comes out.

Report post

This journal entry is closed to replies. We close all journal entries after 90 days.

If there's something you'd like to say, here are some things you can do:

Things you can do