Typically a day like today -- the first day of summer swim -- has me giddy with excitement. Today had the potential to be a double header because it was also the final tee ball game of the season for Porter.
While I could shine on about some of the glimmer, that will be for another post when I can get my head around everything.
In a nutshell, there was a gaff in message taking in our home and Houlder's appointment with the neurologist in Bethesda has been moved to June 10. It was already feeling like Thursday would be a long wait, and now even longer.
Once I tried to recover from that I called Mayo Clinic in Minnesota.
Houlder can get an appointment in 15-18 months.
For those who have mistakenly thought I was keeping it together, this watershed moment proved how fragile my emotions are. I had to retreat to my room. Some crying in front of kids is permissible but I was crossing a line.
This sucks.
Needs no explanation.
I emailed all the doctors who can hopefully help us expedite this.
I don't know if I should go and show up at the ER
For those folks who love Houlder and are pulling for him as much as we are, please speak up of any Mayo connections you may have.
This was a Monday.
Johnny Cash performing Nine Inch Nails:
http://www.youtube.com/watch?v=o22eIJDtKho&playnext=1&list=PL3C3B0E0561E8E9E4
Or Diana Krall:
http://www.youtube.com/watch?v=HjXB69HrvhQ&feature=relmfu
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Susie - I have an idea.It may not be of any use to you, but a friend of mine had a terrible skin disorder that refused diagnosis. Her hair was falling out, skin peeling off, blisters everywhere - a mess. It went on for more than a year with misdiagnosis after misdiagnosis. She eventually ended up with a great specialist but, just before that, she went on-line and (no kidding) googled "real life Dr. House." There are more of them than you think. She happened to find one that specialized in skin disorders. She didn't get to him because she found someone at Johns Hopkins, but he was next on her list. All of which is to take entirely too long to say that I wonder if you might pick up where she left off and see if there isn't a "real life Dr. House" out there who would look at Houlder. I googled the phrase and it looks like there are a few guys out there who really do take cases no one else can solve. If anyone deserves their attention and care at this point, it is Houlder.
ReplyDeleteHolding you in my prayers every day,
Kelly
The voluminous responses to Dr. Fischer's Mayo Clinic post and podcast clearly reflect that POTS is a wide spread physiological condition. Regretfully, as Houlder's experience @ MCV reflects, not all physicians are as yet aware of its existence despite the medical literature now available which did not exist 10+ years ago. However the inference via the MCV interns is that it is still not mentioned in the classrooms. Otherwise you would have expected one or more of them to have come up with the condition and discussed same with you. Not being able to treat it is one thing; not being able to recognize it is something else altogether.
ReplyDeleteThanks Kelly.
ReplyDeleteDad, you're getting fired up.
Dr. Moskowitz does not think it is POTS but is not sure. More testing. Holding off on tilt table which is apparently not fun.
Latimer is next.
Sfh