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Where to go from here? Progressively worsening shortness of breath

Posted In: Medical Stories 0 Replies
  • Posted By: bubba b
  • August 19, 2009
  • 00:02 AM

Okay, here's the predicament I'm in: at present, I experience severe dyspnea (shortness of breath) when lying down: either on my back, or side. This dyspnea has co-incided with hypoxemia (I cannot maintain 90% without oxyegen, or occasionally even with it) and tachycardia up to and exceeding 190b.p.m. I presently sleep with 6L of O2, PLUS an open trach of 10mm, and I get "adequate" oxygenation results on my home-test pulse oximeter: avg SpO2 93-94%, with lowest results in high 70's. (I have copies of this data.) The perceived SOB is so bad that lately I've been forced to consume alcohol in order to be able to sleep.

Here's the backstory:

9 Years ago : Had surgery (UPPP, chin and hyoid suspensions) for the purpose of treating sleep apnea.

: Felt a "snapping" sensation under my chin; developed an "asymmetric" lower lip (think Sly Stallone). The following day, felt a second snap, lip became symmetric, and sleep difficulties returned. Informed surgeon my plica fimbriata (connective tissue from tongue to chin) had failed; MD disagreed strenuously.

Ever since, I've been complaining of worsening sleep and poorer aerobic capacity. My airway, at the jaw-level, has narrowed from 17 to 8 mm over those years. 9 months ago, I was diagnosed hypoxemic while asleep and given an oxygen generator. 3 months ago, I started presenting to ERs with dsypnea (shortness of breath), tachycardia (up to 190 b.p.m.). During 3 of 5 admissions, it was necessary to give O2 while awake to maintain 90%. All 5 times, I was turned loose once I dropped to 100 or less.

The problem is that I have a psych diagnosis (during those 8 years before objective pathology showed up, I was diagnosed as "delusional" for disagreeing with my doctors), and thus, they try to fit "panic" on my S.O.B., even though my "tendency towards panic attacks" laid dormant my entire life, until I deveolped hypoxemia.

What I want is a pressure probe (esophogeal ballon?) dropped as close to my lungs as possible, to determine conclusively if my perception of breathing difficulty is measurable. Preferrably this would be done as part of a sleep study.

My problem is that nobody at my chosen hospital will have anything to do with me, due to my psych diagnosis, and they've even gone so far as to voilate HIPAA to "sour" my relationship at the only other hospital in town. I feel I'm too sick to establish a new MD/patient relationship elsewhere.

Frankly, I think the hopsital in question has a vested interest in not producing the results that would implicate a decade of mis-management of my care. I have expressed my desire to seek civil and criminal action for the lacking quality of care, and it's noteworthy that the ONLY recent study failing to show pathology was done at the hospital in question.

So...how do I most expeditiously set up the sleep study in question? Is it even legal to "stonewall" a patient like this?!?

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