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----- Original Message -----
From: "Kathy Bruckmeyer" <email @ redacted>
> No tx for other diseases is this consuming...You take a pill and you are
> done...With this, you have to think about everything you do, every day of
> every week....
Little oversimplified there......
My old friend from high-school has Primary Pulmonary Hypertension, and what
WE have to do is NOTHING compared with what she's living with -- and her
disease will kill her a lot faster, too. She not only has a medication pump,
about the size of a brick, with a Hickman catheter that feeds directly into
her pulmonary artery, but the medication must be mixed up every 24 hours and
the cartridge kept on ice at all times. And because the med goes directly
into her bloodstream, she can't have ANY bubbles, not even the little tiny
ones we can ignore.
She has to follow sterile procedure when changing her pump cartridge, and
can only shower from the waist down -- sponge baths for the top part.
If her line gets occluded, she has about 2 minutes before she passes out --
and NOT every hospital is equipped to take care of her. She does have a
MedicAlert bracelet, but it still takes time to get treatment.
PLUS she is on oxygen, which means cannula and big fat tubing and a machine
that goes everywhere with her (not that she goes very many places any more).
And she's on a bunch of anticoagulants, diuretics and meds for heartfailure
(which is caused by PPH) so she has to watch her diet and salt intake, and
Vitamin K intake, etc., etc.
And all those meds have horrible side effects -- ones that keep her feeling
ill most of the time. Every once in a while she has a good day.
Only solution is to have a lung transplant, but whether she gets one before
she dies is anyone's guess, and it brings its own share of problems.
Try having a child with Cystic Fibrosis -- or one with Muscular Dystrophy.
Or severe Cerebral Palsy. Or Autism or Schizophrenia. Don't get so involved
in your own troubles that you think you have it worse than anyone else.
Because you don't. They may not TELL you their troubles, but don't assume
that you're the only one who has to deal with unpleasant reality -- it can
get a WHOLE lot worse.
I'm sorry if I'm being preachy, but it's damn PAINFUL to watch her go
through this torture, and I'm NOT enjoying it.
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