TBM

Tracheobronchomalacia (TBM) is still a new concept to me. Not much information was given about it, and anything I have learned has been from different medical sites along with my social media support group and what my body has felt all these years.

According to the Cleveland Clinic website (my.clevelandclinic.org), it is roughly estimated that only about 4-13% of people with lung issues have TBM. But it is unclear if there are more studies being done and what the results are. Possibly, largely due to (wait for it…) doctors overlooking the zebras.

There are two types of TBM. *Primary (or congenital) this is actually the kind I have, as my diagnosing Dr said it was a result of my premature birth. Babies born before 37 weeks are at a higher risk for developing or being born with TBM.

*Secondary (or aquired) This what the medical field says can develop over a lifetime. Yep, surprisingly, people CAN develop this over the course of their lifetime. I’ll explain how.

How it develops: Short of being born with this, people can unknowingly put themselves at risk for developing TBM.

People who have &/or had: *Asthma * Bronchitis *COPD *GERD *Obesity (which has a higher risk of developing GERD) *Exposure to certain toxins (this includes: mustard gas or 2nd hand smoke)

Now we know the how, but WHAT is it? TBM is a condition in which the trachea and bronchial walls are weak and collapse. The trachea and bronchial airways are made of cartilage that are meant to stay more open. (I’m trying to use layman terms for the non medical people like me)

“Normal” people, or those without TBM, have regular airpipes that stay put and do their job. For those living with TBM, our airways collapse beyond what is normal. (Once I can find a picture, I will upload to give a visual).

Yes, surprisingly, human airways are supposed to collapse just ever so slightly upon breathe out. I’m talking about a small fraction so it’s barely noticeable.

However, people like me with TBM, our airways collapse too much. Everyone with this condition is different, but it all does the same thing: traps mucus in and prevents good airflow from traveling through the lungs.

While symptoms can be different, they usually include the following:

• Frequent Upper Respiratory Tract Infections, such as sinus, colds, ect
• Difficulties breathing after physically demanding activities
• Dry and harsh cough (might sound like a barking cough)
• Difficulty bringing up mucous

I remember as a kid in the hospital they would practically flip me on my head and do precussions on my back. This was an attempt to get the mucous out as I always had trouble coughing it up and spitting it out.

The week I spent in the hospital when I got my diagnosis, they had me doing nebulizer treatments. Not just an ordinary one. This one made chugging noises and jiggled me as I sat here breathing through the tube. I always made my family leave after my first treatment. It was too hard to try and breathe like normal when they were sitting there laughing… Because I reminded them of the train on Petticoat Junction. Chugga chugga choo choo…cue the smoke and repeat.

Treatments– Although it was comical, the machine was a special kind to help bring up the mucous. See, TBM is a lifetime adjustment. There is no cure, although the science and medical field are working on it.

There are people who have successfully had surgery in which the doctors put in stents. This supposedly helps keep the airways in place and do their job more effectively. There are only a few areas that do that yet within the United States.

If you are like me, and your body seems to reject foreign items (more about that on the Immune deficiency page) this is not an option. So how do I manage it then?

Much like my nebulizer treatments at the hospital, people with TBM have flutter valves. It’s like a miniature, travel size airway jiggler. A hand held device for breathing exercises (breathe in and out), it has a mechanism that promotes jiggling in the airways as we breathe out.

Use of nebulizer, cpaps and precession vests are also used to help. It reminds me of the phrase “out with the bad air in with the good”, because that’s essentially what it is. Mucous goes out (hopefully) and good air goes in.

I hope this gives you a better understanding of what TBM is. Are you new to the term? I welcome any questions and will try to answer them to the best of my ability.

*Disclaimer: this page is designed to be used for informational purposes only. If you suspect you, or a loved one has TBM, talk with your primary medical provider about seeing a pulmonary specialist. There are tests that are given to help diagnose this condition.