Meet Karen

My Journey with TBM ( You Said I have what )

     TRACHEOBRONCHOMALGIA

TBM is a rare and often misdiagnosed debilitating disease. It affects your trachea windpipe. It can also affect your bronchi’s It can make it very difficult in breathing upon exertion . It can be challenging to diagnosis unless some deep diving is done, and you are persistent with being your own advocate.

Over the years I have had multiple challenges with upper respiratory infections. My parents told me I was taken to the hospital serval times due to not being able to breathe. Growing up I had several chronic Upper respiratory infections. It was always during the change of seasons, very sensitive to dampness or if someone was painting and or very cold out. Middle of summer was hard too. I was always made fun of childhood because I could not keep up with others and always was a little on the chubby side. Probably because I could not exercise well due to my breathing, I always tried never to give up until I had enough. I remember one time my mom signed me up for soccer I couldn’t take it, so I gave my t-shirt away and quit. As I grew older, the frequency of these infections did not decrease, leading to countless visits to specialists and numerous tests. Despite my efforts to seek help, it seemed that no definitive diagnosis could be made, leaving me in a constant state of frustration and discomfort.

Jumping to adult hood age 50 diagnosed with an Autoimmune condition that led to ILD which is Interstitial lung disease. I tried treatment after treatment. Meaning I tried rescue inhalers. Biological medicines too. Currently on a Biological med. I was put in the hospital for 1 week with Oxygens levels under 70. I did multiple tests including PFT tests Pulmonary functions tests. I even did Iron infusions.  Nothing worked and nothing helped my breathing. Ct scans were done multiple times. I was sent back again to do another type of CT scan. The scan can back, and I was called into the doctor’s office. I was scared to death thinking it might be cancer. She explained she wanted to send me to get what is called a bronchoscopy for further investigation. By that time, I was freaking out. The doctor who did the bronchoscopy explained not cancer and decided to dig deeper into my symptoms, which led to the discovery of Tracheobronchomegalies (TBM).

The diagnosis was both a relief and a new source of anxiety. On one hand, I finally had an explanation for my chronic respiratory issues; on the other, the rarity and complexity of TBM meant that the path to effective treatment was uncertain. Armed with this new knowledge, I became more proactive in managing my condition, researching tirelessly and connecting with others who shared the same diagnosis.

I looked for support and found a group online with.  TBM.cure.com and joined the support group. What a Fantastic group I can’t say enough about this group and the web site.

Living with TBM is no Joke, I have learned to love my Bi-Pap not a cpap, A Bi-pap allows airflow through my trachea and expands it like a ballon so I can breathe out.  With TBM you feel like you are breathing through a straw upon an excursion, I must sleep in a chair. I can’t lay down in bed. If I lay flat down on my back or side, I can’t breathe due to squeezing my lungs i.e. trachea and Bronchi. Which puts a damper on my sweetness with my Hubby. We manage cuddle time is a bit different these days. I’m in the process of possibly having surgery however my autoimmune disease is holding me back. The Famous Dr Lazzaro who is the expert with this diagnosis does not want to risk surgery while I have a skin infection. So, we will possibly see once I get clear if he thinks we can go ahead.

In the meantime, I’m being my own advocate in this challenge. Advocate advocate advocate. I embrace challenging myself every day. My body my choice, may take a chance. Tracheobronchoplasty is serious surgery. There are a lot of what ifs. Not being able to breath is huge and to take a risk of feeling better and breathing somewhat normal again is the chance I will talk to the doctor about. I have been poked and pronged my entire life by doctors, they sometimes do not know everything . That’s why I must be and will continue to advocate and teach others how to advocate for themselves.