Burd

Lady of the Fringe

it's a magpie's nest

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Home again, home again, jiggedy jig.
Burd
magpie49
Home from my travels, again. Happy to sleep in my own bed.
This trip was to Grove City, PA and thence to Indianapolis, IN, to the PHAssociation Convention there. Lots of early mornings, late nights and long days in between.

I learned more about the dastardly disease that my oldest daughter, had, (PH stands for pulmonary hypertension*) and about advances in treatment. When she was diagnosed with PH, the doctor giving us the diagnosis said there were no treatments, but we should see the transplant people for completeness sake. When we saw the transplant people, and I asked if there were any medications that might help, the doctor said there was something, but it wasn't approved, and they only used it to help the candidates hold on at the very end, in hopes of getting their transplant before they died. When we went to the other hospital, the doctor there said you don't need a transplant, we have medicine to help; and there were two, nifedipine and Flolan.

Now there are TWELVE medicines, and another one that should be FDA approved sometime this year.

I met some new people, and met some friends face to face for the first time. I also brought along origami paper, and managed to fold and give out around 600 flapping birds.

There were dinners, and at one, while I was folding birds for the children of a couple at the next table, I was answering a question from someone at my own table. She'd asked why I was still active in the PH community if my daughter had passed away. I answered that sometimes a random thing I know can help someone else, like finding out that saline nasal gel is better than saline nasal spray for someone with an oxygen cannula, because the gel doesn't burn like the spray, and doesn't run out of the nose right away... and as long as I have the chance of helping someone, I'm in.

The mom at the next table said she was an ear, nose and throat doctor, asked a few questions about saline nasal gel, and told me I may just have saved some people from nose bleeds. How is that for a random thing being unexpectedly useful?

The PHA has an early diagnosis campaign that I want to help with. It is too late for my daughter, (it took 13 years from the time we knew something was very wrong until we got a doctor to tell us it was PH) but I don't want anyone else to wait that long and get that sick before they find a doctor who can name the problem and start appropriate treatment. It was another year after diagnosis before she was prescribed medication that helped.

*pulmonary hypertension (long for is pulmonary arterial hypertension) refers to high blood pressures in the lungs, related to changes in the walls of the capillaries and increased vascular resistance. it generally plays merry hell with the function and health of the right side of the heart. There is also a version where the left side of the heart is affected, sometimes called PVOD, pulmonary venous occlusive disease, and other names much less fond.

PS. I did something horrible while writing this before, and couldn't figure out how to fix the eggshell on cream coloration, so trying again. *big dog sigh*
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I went and read a little bit of your blog. I'm going to read more. Very touching and thoughtful, and nicely written. Thanks for letting me in on your story.

Thank you for visiting there and reading, and for the compliments.

I hope it's not too late to warn you to have tissues handy, particularly when you read "Saying Goodbye".

Also, poking around over there after a long absence, I'm thinking this post might go well over there, too.

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