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Adult Acquired Tracheomalacia
I was just denied by Mayo for a rare condition called adult acquired tracheomalacia following hemithyroidectomy--collapsed airway (with 20+ years estrogen deficiency that has caused both osteopenia and osteoporosis, so my cartilage is also broken down) and a very complex genetic profile that doesn't allow typical medications, like opioids, benzodiazepenes or GABAergics. I don't have a definitive diagnosis, yet, for reasons below. If you're denied at one of, if not THE only hospital in the world that can deal with you, what do you do next? Crawl into a corner and die? I can't breathe, and they refuse to see me.
My local pulmonologist said there is nobody in the system here where I live that can deal with me. They don't have the expertise or the proper equipment for diagnosis (dynamic CT). Besides, she won't refer me, anyway. She went off on a wild goose chase over something that it isn't, rather than trying to rule out what it most likely is, and was insisting on using medications on my allergy list. I refuse to let her kill me. My primary said he doesn't have the authority to refer me because he's just a general medicine doctor, and they throw those away. Do I just apply again, and ask my case to be shuttled to pulmonology this time? They had sent my case to General Internal Medicine the first time, or do I go over the heads of intake and send a dossier of my symptoms with printed records to the pulmonology department, itself? GIM told me they reviewed my case. What case? I was a blank slate. There was nothing for them to look at but the application where I stated just what I stated above.
I am now functionally disabled, can't perform most activities of daily living, at least not easily, and am confined to a wheelchair for leaving the house because exertion causes me to gasp for air. I tried doing a typical activity that most people can do, and while standing in line waiting to get in started going into repiratory crisis. They almost called an ambulance, but I wouldn't let them. I just needed to sit down to catch my breath, and try to bring my heart rate down. I had a pulmonary function test that shows moderate to severe obstruction, and 159% air trapping, with a forced expiratory flow of only 20%. I can't travel out of Minnesota, and I shouldn't have to with Mayo, Rochester being only 90 miles away.
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@maidenmn, I'm confused that neither of your doctors want to submit a physician referral for you. It sounds like you took the right steps to self-refer, which are considered equally as physician referrals. However, your could consider asking your pulmonologist to submit a referal on your behalf to the Division of Pulmonary Medicine where tracheomalacia is treated.
I've added your post to the Lung Health support group as well to help connect you with others living with tracheomalacia like @historyfan.
@maidenmn, has your diagnosis of tracheomalacia been confirmed or is it a working diagnosis only since your local pulmonology department lacks some of the necessary diagnostic tools?
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2 ReactionsThe pulmonologist won't refer me because she convinced herself that I do not have tracheomalacia because a static CT could not capture a dynamic airway collapse, despite her own PFT results showing moderate to severe obstruction. She went off on a wild good chase, trying to blame my arthritis medication, even though my rheumatologist and I both looked at "UpToDate" and that's not it. It is a working diagnosis because they only have static CT (which, along with 2 chest xrays, shows perfectly clear, unscarred, lungs with beautifully curved diaphragm--no asthma, no COPD), and she was going to completely knock me out for a bronchoscopy, which also won't show anything (you need dynamic bronchoscopy, with me being awake to cough, forcefully exhale, etc.), especially since she insisted on using a medication from my allergy list, which has caused cardiovascular collapse and anesthesia awareness in the past. She's dangerous, so I terminated the relationship.
I went to my primary and he said Mayo won't accept a referral from him because he's just a generalist. I'm literally up a creek without a paddle.
Oh, and I thought my extremely complex genetic profile would be enough. Nobody local can deal with it (obviously) or me. This is a critical safety issue. Mayo invented pharmacogenomics, and now they're turning me away based on their own invention? This makes no sense.
I am so sorry that you are going through this. I had the same thing, and now have a tracheal stent. It was the Interventional Pulmonologists who inserted the stent.
I hope you are able to get some help. Are you near any of the smaller regional Mayo locations?
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2 Reactions@heart4wi I'm happy to hear you got a partial solution. Are they just doing a stent trial before tracheobronchoplasty? I re-applied, and in my "condition" I stated I needed to see internventional pulmonology, added my muscle tension dysphonia that also came about from the same goiter surgery, requesting a laryngologist, and then in the "anything else you'd like us to know" is where I added the fact I can't have most medications, and that I would need their pharmacogenomic anesthesia team. Hopefully I get in this time because I specified the specialists, instead of just leaving it up to an intake clerk and Mayo's AI. I live in Minnesota, and Rochester is only 93 miles away. The clinics up in the Twin Cities are just that: clinics, like any other.
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1 Reaction@maidenmn I am just across the creek in Wisconsin.
They don't really know yet how they will handle the stent. I had tracheal cancer.
I will tell you that the stent is no picnic - it comes with its own set of health issues.
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1 Reaction@heart4wi Howdy, Neighboreeno! Oh, I'm so sorry to hear that about your cancer! I'm aware that the stent comes with a huge infection and possible rejection risk, as well as a bunch of other horrible things. Hopefully they can figure it out soon for you, so you can get it out and they can do a more permanent repair.
I take a daily antibiotic to keep the infection at bay. Of course, I have quarterly scans to check for cancer so far. They have done several bronchoscopies to check the stent and have flushed my lungs out to clear mucus. I also have some emphysema, so there is lot.
Nice to find a neighbor!
Well, I'm here, for all the good it's doing me. CT showed I don't have tracheomalacia, rather 65% compression of my trachea because my aorta is crushing it, but the doctor wanted to chase my RA medication just like my local doctor. They see that rheumatoid arthritis diagnosis and are attracted to that like moths to a flame. Newsflash, "Doc": rheumatoid arthritis is not the cause of everything that ails a person. I brought my genetic report, too, showing my complex genetics that don't allow for most medications. He glanced at it, then handed it back to me. Finally, he referred me to a speech therapist. I'm suffocating and in a wheelchair, but let's see why my voice doesn't work after thyroid surgery that left my trachea dislocated. This place is the worst. I could have stayed home and been gaslit by my local providers and not had to pay a thousand dollars for a lengthy hotel stay.
The pulmonologist I saw gave me a phony diagnosis of COPD BEFORE he even ordered any tests! A 65% extrinsic compression of my trachea by my aorta is NOT COPD. Not in ANY universe! Now that's in my chart. A fake diagnosis. He was checking a box, and had pre-conceived notions that his own tests disproved. Now I have a fake diagnosis, and I'm not going to get the cardiothoracic surgical referral I need to survive. Dr. T literally just handed me a death sentence. I'm home now, dizzy, worsening shortness of breath after the weekend, weak, starting to experience breatlessness when at rest (that's new), and to him, a crushed trachea is "COPD".