Just to put things in perspective...

2005-10-20 22:49

Dying young: Not as romantic as it sounds. save-allan.org.

Allan’s still dying. Ironically, although Medicaid turned him down because he “might” die in surgery, it turns out that he will die without it.

Against this backdrop, the crap we get from junk fax lawyers (forged documents, blowing off court orders, etcetera) has really started to fade into insignificance. I mean, it’s still funny, but nothing’s quite as funny when your friend is dying and there’s not much you can do about it.

I mean, hell, we all know he might not live through a lung transplant. But you gotta try. Giving up easily makes for a really short game that you always lose.

I know it’s easy, on the internet, to dismiss these things, because we all see so many of them. This one’s different for me. I’ve known Allan for years. Early on, all I knew was that he spent a lot of time commenting on how he was logged in “from the hospital”, and he spent a lot of time online because he couldn’t do much else. It wasn’t until a year or so back that I found out why he spends so much time in the hospital. Allan’s imminent death has been on the horizon for a long time. There was a brief spurt of hope when the UNC hospital expressed interest in trying to save him. They think they can do it; they have taken other cases like this. But while most insurance would think that “certain death without treatment” is a good basis for treatment, Medicaid apparently doesn’t, and if you have Cystic Fibrosis, it’s pretty hard to get any other health care.

Anyway… There you have it. A new banner to copy and put up all over the place.

Peter Seebach

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Comments

  1. I used to work with a young woman whom I caught with an inhaler at her desk one day. I asked, oh, do you have ashthma? and she said,"no, I have Cystic Fibrosis". She was married to a young man in my office and it breaks my heart. she is mid twenties and will probably not live to see thirty. she has been out of work lately on medical leave and her prognosis has not been good. I was insenstive enough at one point before I knew to ask her if her and her husband would have kids.......


    Cystic Fibrosis, an illness that can eventually be cured when we know enough about genetics.

    Jacque O'Boyle

    — Jacque O'Boyle · 2005-10-21 21:52 · #

  2. Allan has spent quite a lot of time arguing with CF carriers who want to have kids, explaining to them that it is not such a great thing as all that to die horribly at a young age.

    seebs · 2005-10-22 14:51 · #

  3. I have dear relatives in NC who had a CF child. There is a good network of people in the Charlotte area and around NC to help cure CF.

    On year before she died my first cousin once removed was a poster child for CF. Had here photo taken with major league baseball team that winters in Charlotte.

    Sad, but the family stayed together and had other healthy children. They truly loved her.


    — tubby · 2005-10-29 20:31 · #

 
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