Pulmonary Hypertension

I’m a weird case. Doctors have always had trouble trying to figure out exactly why I have trouble breathing. The allergies have always been quite obvious; both asthma and allergies are prevalent in my family. After years of moving around and trying to find doctors who believed me, they also discovered I have:

  • Hiatal Hernia (from a two-year chronic cough a doctor didn’t want to treat)
  • GERD (from the hiatal hernia)
  • Obstructive Sleep Apnea (from my tongue that covers half of my airway, the giant tonsils, and other weirdness in my airway)
  • Vocal Chord Dysfunction
  • Left Hemidiaphragm that doesn’t move
  • Anxiety because not being able to breathe well for 25 years makes you anxious

Last year restrictive lung disease started appearing on my breathing tests. Lately I’ve been short of breath often from walking up stairs, doing normal things like making the bed, and occasionally my oxygen drops into the 80s for a while.

While telling one of my lung docs about my symptoms, it was mentioned I should be assessed for pulmonary hypertension (PH) with a possible cardiac follow-up. So I’ve been reading up on this rare lung disease, and of course most of the symptoms seem to match up with what I’ve been experiencing. The only problem is those same symptoms can match up to a lot of conditions. I don’t want to have PH, but if that’s what ails me, it could be treated.

I’ve been in this situation before where a doctor thinks they may have it figured out. At one point everyone was certain I had allergic bronchopulmonary aspergillosis. I’m very allergic to aspergillus mold, and I had all the symptoms expect the one where you cough up oddly shaped chunks of phlegm. Over the years I’ve been told I might/probably have:

  • a fungal mass in my lungs
  • chronic bronchitis
  • COPD
  • right-heart failure

…to name a few. I’ve even been told I don’t have asthma and was taken off all maintenance medications only to go back on them 6 months later.

Last month my jaw started hurting, I talked to my dentist, and was referred to a TMJ specialist who told me my jaw is causing a lot of my breathing issues by sitting back too far and pinching my airway. I’m willing to look into this, but am not willing to pay the $2500 upfront. I’m currently in negotiations with my insurance company for a pre-certification to cover it.

So in the meantime I will not get my hopes up, I will not let the internet convince me of a diagnosis, and I will wait to hear from my doctors.