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fizz

New member
Joined
Jan 16, 2016
Messages
4
Reason
PALS
Diagnosis
10/2013
Country
US
State
Pennsylvania
City
ABE
I went to the hospital for a visit today, because as my breathing gets worse, we've had to seriously consider adding a BiPAP to my conglomeration of various medical gear.

I was so nervous, but it turns out I didn't really have any reason to be. I've had some bad experiences with doctors in the past (I started showing symptoms around 13-14, and wasn't really taken seriously, which I don't blame them for!) so I tend to be maybe more anxious than is warranted. Buuuut, it all went really, really well and I'm looking forward to finding out more and moving forward with this.

The only suuuuper annoying thing was the nurse insisted on moving my wheelchair around instead of letting me do it myself, but then in the testing room they made me get OUT of my chair - which is full of custom supports and positioning! - and into a large bariatric waiting room style chair with NO support at all, then ignored me for several minutes until she finally thought to ask if I was okay. Um, no, you took a tiny boy out of his custom wheelchair and are SURPRISED that he's struggling to stay upright and not slide out of this weird plastic other chair?

I still honestly don't know what the point was - my wheelchair was much closer to the testing machine and it affected my test results to the point where the pulmonologist couldn't really use them because they were bad but weren't a good representation of how I breathe normally.

My diaphragm was flat in my x-rays from the other month's ER visit, which he wasn't too concerned about juuuuust yet without further testing, but I can't find any info about what that might mean because the internet basically tells you it only happens in COPD... which I don't have... so I don't know what's going on in that department.

I see him again three months from now, and in the meantime, I have more labs to do (yay, more blood work) to rule out the possibility of an autoimmune disease on top of neuromuscular disease - just what I wanted!! :eek: haha - because my toes turn blue if I'm sitting up for more than two or three minutes, but my PT and OT think it's because of the muscle atrophy in my legs causing pressure that limits the blood flow. I also have a full scope of lung function testing to do - the kind where you sit in the plexiglass box and they measure all sorts of things like your lung capacity, MEP/MIP, so hopefully that'll give us more information to work with!

We didn't really talk much about BiPAP today, but he was concerned more with my medical history and making sure that we could rule out certain other issues (asthma, allergies) as the cause of some of the symptoms I have (resp. difficulty and mucus) because those would be much easier to treat. He was REALLY really thorough and wonderful about explaining all my test results to me, even the ones he couldn't really work with because the results were so muddled by my poor positioning, and it went great.

For now, until testing is complete, the plan is just to keep doing what I'm doing and to hang in there until we can figure out exactly what is going on.

It's not easy, but at least the process is in motion and the gears are turning - a small victory!

Here's hoping that it all comes together sooner rather than later, but we'll know more in April. :)
 
Glad it went well- keep us posted.

Best,
Laurie
 
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