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Ping: Ari

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General fitness, health and nutrition
Published
5 May 2005
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12 May 2005
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Delenn
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  1. Finally found a bone marrow drive I could get to. (I tried organizing
    one at Church but it failed for two reasons: half the people said they
    didn't want to put themselves through a painful extraction if they were
    a match, and the other half had already registered at some point or
    another. I personally have trouble understanding who wouldn't take a
    stab in the back to save someone's life, but I figure they haven't
    figured out karma yet and the joke;s on them.

    Anyway, I showed up at this bone marrow drive with my cutest kid tagging
    along. This particular child of mine has had two serious
    hospitalizations where he got to live 'cuz of medical marvels, and he
    gives me a certain perspective on karma.

    And along comes the local TV reporter crew and they glom right onto me.
    I figure it was the cute kid, since everyone else in the room was a
    typical gorgeous 22 year old college chick. (Not a lot of men showing
    up for this.) They interview me about bone marrow donation (as I hold
    Cute Kid like an Accessory on my hip) and we show up on the nightly news.

    By the way, what I said was that I was there because a friend of mine
    has aplastic anemia, and I know that the odds are that I won't be a
    match for him, but I might be a match for someone else and I'd take a
    stab in the back to save a stranger's life. What goes around comes around.

    So, anyway, I'm signed up. Quite publically. And the [censored] made me
    pay $65 to do it, too, on account of my sheer whiteness. (I put down
    four different ethnic categories on my sheet, but all of them translated
    to "white" to them.) IMO they should get the money from the people who
    are too scared to sign up. Guilt money or something.

    So, how are you doing?

    Delenn

  2. Quoting Delenn:

    Quoted message said:

    So, anyway, I'm signed up. Quite publically. And the [censored] made me
    pay $65 to do it, too, on account of my sheer whiteness. (I put down
    four different ethnic categories on my sheet, but all of them translated
    to "white" to them.) IMO they should get the money from the people who
    are too scared to sign up. Guilt money or something.

    Say what?
    You had to *pay* to donate marrow? More details, please.

    (or did I read this wrong?)

  3. Quoted message said:

    but it failed for two reasons:>

    Three reasons: Because most people are [censored], and I wouldn't risk my
    marrow going to save a slimeball republican.

  4. Quoted message said:

    Say what?


    You had to *pay* to donate marrow? More details, please.

    (or did I read this wrong?)>

    You didn't get his scam yet? They charge everyone $85, and he gets half
    the loot they raise.

  5. Quoted message said:

    Scorn B Woe May 5, 1:45 am show options

    Newsgroups: misc.fitness.weights
    From: "Scorn B Woe" <[email hidden]> - Find messages by this
    author
    Date: 4 May 2005 22:45:19 -0700
    Local: Thurs,May 5 2005 1:45 am
    Subject: Re: Ping: Ari
    Reply | Reply to Author | Forward | Print | Individual Message | Show
    original | Report Abuse

    Quoted message said:

    but it failed for two reasons:>

    Three reasons: Because most people are [censored], and I wouldn't risk my

    marrow going to save a slimeball republican.>

    Math wasn't your strongest subject, was it?

  6. Delenn said:

    Finally found a bone marrow drive I could get to. (I tried organizing
    one at Church but it failed for two reasons: half the people said they
    didn't want to put themselves through a painful extraction if they were
    a match, and the other half had already registered at some point or
    another. I personally have trouble understanding who wouldn't take a
    stab in the back to save someone's life, but I figure they haven't
    figured out karma yet and the joke;s on them.

    Actually, they usually use stem cells harvested from peripheral blood.
    You get about a week of neupogen injections to cause your body's marrow
    stem cells to proliferate and enter the peripheral blood and then they
    hook you up to a maching which filters them out and gives your blood
    back. Some people can get achy bones. If the first graft doesn't 'take',
    then they may go back and ask for a bone marrow donation, but that's
    done under general so there is no 'painful extraction'.

    Quoted message said:

    Anyway, I showed up at this bone marrow drive with my cutest kid tagging
    along. This particular child of mine has had two serious
    hospitalizations where he got to live 'cuz of medical marvels, and he
    gives me a certain perspective on karma.

    And along comes the local TV reporter crew and they glom right onto me.
    I figure it was the cute kid, since everyone else in the room was a
    typical gorgeous 22 year old college chick. (Not a lot of men showing
    up for this.)

    That's sad, because men are badly needed. The US Air Force used to (and
    I think still does) run marrow drives, but that still doesn't provide
    enough male volunteers.

    Quoted message said:

    They interview me about bone marrow donation (as I hold
    Cute Kid like an Accessory on my hip) and we show up on the nightly news.

    By the way, what I said was that I was there because a friend of mine
    has aplastic anemia, and I know that the odds are that I won't be a
    match for him, but I might be a match for someone else and I'd take a
    stab in the back to save a stranger's life. What goes around comes around.

    Thank you.

    Quoted message said:


    So, anyway, I'm signed up. Quite publically. And the [censored] made me
    pay $65 to do it, too, on account of my sheer whiteness.

    Probably covers the cost of the test for the major HLA screening. If you
    match someone, their hospital will pay for you to have a second blood
    test to see if you match on the remaining antigens that they match for.

    Quoted message said:

    (I put down
    four different ethnic categories on my sheet, but all of them translated
    to "white" to them.) IMO they should get the money from the people who
    are too scared to sign up. Guilt money or something.

    So, how are you doing?

    Just survived a series of moronic stuff ups in hospital before walking
    out after 10 days. I'm recovering from that, but I'm debating whether to
    lodge formal complaints about the two biggest ones. We're still waiting
    to see if they damaged my kidneys. I wish I could get my cousin and
    David Cohen to come over and handle some of the shifts during the
    transplant. They could tell the doctors off who don't bloody well listen
    to the other doctors or the patients! They changed orders during
    treatments they knew nothing about and cut off IV hydration when the
    patient is too sick to keep even water down...but they keep the high
    doses of IV nephrotoxic drugs running full steam ahead *sigh*

    On a brighter note, seeing as we finally got the higher concentration
    deca durabolin, I'm able to get the 400mg/wk that I need and it appears
    to be starting to have an effect. Far too soon to tell, though.

    Ari

    Quoted message said:


    Delenn

    --
    spammage trappage: replace fishies_ with yahoo

    I'm going to die rather sooner than I'd like. I tried to protect my
    neighbours from crime, and became the victim of it. Complications in
    hospital following this resulted in a serious illness. I now need a bone
    marrow transplant. Many people around the world are waiting for a marrow
    transplant, too. Please volunteer to be a marrow donor:
    http://www.abmdr.org.au/
    http://www.marrow.org/

  7. spodosaurus said:
    Delenn said:

    Good luck, by the way. Hang in there long enough and science will
    come riding to the rescue. At least, we may as well believe that, right?

    Actually, a doctor at NIH is working on a gene therapy. Probably too far
    off for me, but who knows. I've lasted this long, against many
    predictions. I'm hoping the results of the latest biopsy tomorrow don't
    show a progression to myelodysplastic syndrome. That would cut this
    escapade quite short.

    MA just passed a law allowing stem cell research. I'm not sure how that
    ties in with that pesky Federal ban on stem cell research (I didn't
    follow this legislation) but it sure looks like an area ripe for
    explosion. Stay connected, stay current with the research and hop on
    the first clinical trial you can get. You've got everything it takes to
    survive this.

    (But I'd advise against butchering residents - as tempting as it is -
    because it might earn you some animosity in teaching hospitals. Maybe.)

    Delenn

  8. "Delenn" <[email hidden]> wrote

    Quoted message said:


    Not the marrow, but I had to pay for the HLA testing of my blood so that
    it can be entered in the Bone Marrow Registry. I gave through the New
    England Marrow Donor Program. Apparently they had a Federal subsidy but
    it ran out last year for white people and only covers people of any other
    color. As a white person with two sons I'm not their best choice donor.
    Odds aren't great they'd use me.


    How does it feel to be discriminated against? For being WHITE!! LOL And
    by the big federal gub'mint too??

    Maybe another area for your state lawmakers to rectify??

    Doncha know, the government knows best!

    <poking Delann with pointy stick>

  9. In article <[email hidden]>,

    David Cohen said:


    You're both discovering a sad truth about modern hospitals.

    Had my own interesting experiences recently. Had some x rays done. Get a
    call a week later telling me they lost them and asked if I could come
    back do them again. Gets better, get a phone call from the doc (who is
    actually a good guy and a good doc BTW), who says

    "Will, your blood work came back and I think you need to come in right
    away and see me for additional tests, you appear to have no working
    thyroid at all from what what I can tell from these tests."

    "Doc" I say "that would concern me if I had had blood work done the
    last time I was there"

    Long pause and shuffling of papers over the phone... "You didn't have
    any blood work done Will?"

    Me "nope, none doc"

    Doc "then I guess I better figure out whose blood work this is"

    Argh!

    --
    Will Brink @ http://www.brinkzone.com/

  10. In article <[email hidden]>, Delenn <[email hidden]>

    Quoted message said:
    spodosaurus said:
    Delenn said:

    Good luck, by the way. Hang in there long enough and science will
    come riding to the rescue. At least, we may as well believe that, right?

    Actually, a doctor at NIH is working on a gene therapy. Probably too far
    off for me, but who knows. I've lasted this long, against many
    predictions. I'm hoping the results of the latest biopsy tomorrow don't
    show a progression to myelodysplastic syndrome. That would cut this
    escapade quite short.

    MA just passed a law allowing stem cell research.

    Gov says he will veto it. Gotta save those clumps of cells while people
    die don't ya know.

    --
    Will Brink @ http://www.brinkzone.com/

  11. In article <[email hidden]>,

    David Cohen said:

    "WillBrink" <[email hidden]> wrote

    Quoted message said:

    "David Cohen" <[email hidden]> wrote:

    Quoted message said:
    Quoted message said:

    You're both discovering a sad truth about modern hospitals.

    Had my own interesting experiences recently. Had some x rays done. Get a
    call a week later telling me they lost them and asked if I could come
    back do them again. Gets better, get a phone call from the doc (who is
    actually a good guy and a good doc BTW), who says

    "Will, your blood work came back and I think you need to come in right
    away and see me for additional tests, you appear to have no working
    thyroid at all from what what I can tell from these tests."

    "Doc" I say "that would concern me if I had had blood work done the
    last time I was there"

    Long pause and shuffling of papers over the phone... "You didn't have
    any blood work done Will?"

    Me "nope, none doc"

    Doc "then I guess I better figure out whose blood work this is"

    Argh!

    Double argh from a more typical patient who actually did have some blood
    work along with the xrays, doesn't know any better..."Doctors are always
    right!"...and is now on Synthroid.

    And he's a good doc! How amazing is that? I feel for the guy. You have
    to really keep on top of what is going on and or have someone else doing
    it.If you don't, you're dead meat.

    Quoted message said:


    David

    --
    Will Brink @ http://www.brinkzone.com/

  12. Delenn said:

    Finally found a bone marrow drive I could get to. (I tried organizing
    one at Church but it failed for two reasons: half the people said they
    didn't want to put themselves through a painful extraction if they were
    a match, and the other half had already registered at some point or
    another. I personally have trouble understanding who wouldn't take a
    stab in the back to save someone's life, but I figure they haven't
    figured out karma yet and the joke;s on them.


    At church? Wouldn't sign up because it might hurt?

    I'm surmising that they slept throught the Good Friday services?

    Quoted message said:


    And along comes the local TV reporter crew and they glom right onto me.
    I figure it was the cute kid, since everyone else in the room was a
    typical gorgeous 22 year old college chick. (Not a lot of men showing
    up for this.) They interview me about bone marrow donation (as I hold
    Cute Kid like an Accessory on my hip) and we show up on the nightly news.


    Cute kid, roomful of 22 year old college chicks.

    Sounds like a plan.

    Quoted message said:

    By the way, what I said was that I was there because a friend of mine
    has aplastic anemia, and I know that the odds are that I won't be a
    match for him, but I might be a match for someone else and I'd take a
    stab in the back to save a stranger's life. What goes around comes around.

    So, anyway, I'm signed up. Quite publically. And the [censored] made me
    pay $65 to do it, too, on account of my sheer whiteness. (I put down
    four different ethnic categories on my sheet, but all of them translated
    to "white" to them.) IMO they should get the money from the people who
    are too scared to sign up. Guilt money or something.


    Not sure what "whiteness" has to do with it. Anemia?

    rm

  13. Quoted message said:
    Quoted message said:

    Scorn B Woe May 5, 1:45 am show options

    Newsgroups: misc.fitness.weights
    From: "Scorn B Woe" <[email hidden]> - Find messages by this
    author
    Date: 4 May 2005 22:45:19 -0700
    Local: Thurs,May 5 2005 1:45 am
    Subject: Re: Ping: Ari
    Reply | Reply to Author | Forward | Print | Individual Message | Show
    original | Report Abuse

    Quoted message said:

    but it failed for two reasons:>

    Three reasons: Because most people are [censored], and I wouldn't risk my

    marrow going to save a slimeball republican.>

    Math wasn't your strongest subject, was it?


    Noone expects the Spanish Inquisition!

  14. BobMac said:

    Not sure what "whiteness" has to do with it. Anemia?

    Diversity of HLA types from minority groups in the US marrow donor
    registry. If she was a white male she might not have had to pay, either,
    as there's an over-all shortage of men in the registry.

    Ari

    --
    spammage trappage: replace fishies_ with yahoo

    I'm going to die rather sooner than I'd like. I tried to protect my
    neighbours from crime, and became the victim of it. Complications in
    hospital following this resulted in a serious illness. I now need a bone
    marrow transplant. Many people around the world are waiting for a marrow
    transplant, too. Please volunteer to be a marrow donor:
    http://www.abmdr.org.au/
    http://www.marrow.org/

  15. In article <[email hidden]>, Delenn <[email hidden]>

    Quoted message said:


    What, you're - gasp - using steroids? Dontcha know those things can
    kill you?

    Let's hope you're kidding here. Ignorance is what kills.

    --
    Will Brink @ http://www.brinkzone.com/

  16. WillBrink said:
    Delenn said:

    What, you're - gasp - using steroids? Dontcha know those things can
    kill you?

    Let's hope you're kidding here. Ignorance is what kills.

    Jeez, Will. I've been posting here (and even occasionally READING here)
    regularly for three full years now, and I google back to '95 in this
    group. I've actually paid money for publications by authors you know.
    I read the cites you give me.

    At some point you give to give me the benefit of the doubt. Maybe next
    century? Maybe when my BF% hits the teens while I'm in my 40's? (Hell,
    I'll even supply jpegs.)

    Delenn

  17. spodosaurus said:
    BobMac said:

    Not sure what "whiteness" has to do with it. Anemia?

    Diversity of HLA types from minority groups in the US marrow donor
    registry. If she was a white male she might not have had to pay, either,
    as there's an over-all shortage of men in the registry.

    Ari


    Ah. The scarcity thing.

    I keep getting called to do platelet donations. Apparently I share some
    markers with a bunch of sick people...

    Thanks.

    rm

  18. BobMac said:
    spodosaurus said:
    BobMac said:

    Not sure what "whiteness" has to do with it. Anemia?

    Diversity of HLA types from minority groups in the US marrow donor
    registry. If she was a white male she might not have had to pay,
    either, as there's an over-all shortage of men in the registry.

    Ari


    Ah. The scarcity thing.

    I keep getting called to do platelet donations. Apparently I share some
    markers with a bunch of sick people...

    Thanks.

    rm

    Yeah, in the states the often do better matching for platelet and red
    cell donations for patients that require them over the long term. If
    they did that here, my odds of survival would be significantly better.
    Platelet donation is a more serious thing, though. The blood bank can't
    store them for more than five days, and they don't last much longer than
    7 days in the patient. Lots of cancer patients who are undergoing
    treatment or transplant need them desperately.

    Ari

    --
    spammage trappage: replace fishies_ with yahoo

    I'm going to die rather sooner than I'd like. I tried to protect my
    neighbours from crime, and became the victim of it. Complications in
    hospital following this resulted in a serious illness. I now need a bone
    marrow transplant. Many people around the world are waiting for a marrow
    transplant, too. Please volunteer to be a marrow donor:
    http://www.abmdr.org.au/
    http://www.marrow.org/

  19. Ari, I saw your new sig. Do you have worse news? I recall you were
    going in for new tests.

    May I ask, what's the story about how you got the aplastic anemia? I
    didn't realize it happened because of something. I thought it just
    happened.

    Do you have access to hospice services in AU? I ask because people are
    often really slow to access them, but they are really, really helpful to
    everyone: you, your wife, your kids. (Do you have kids?)

    Delenn

  20. Delenn said:

    Ari, I saw your new sig. Do you have worse news? I recall you were
    going in for new tests.

    In the last nine months things have gotten remarkably worse due to
    medical bungles and slow to react doctors. I'm not expected, nor do I
    expect, to survive too much longer. If I make it through into next year
    it'll be more than anticapted.

    Quoted message said:

    May I ask, what's the story about how you got the aplastic anemia? I
    didn't realize it happened because of something. I thought it just
    happened.

    The short version: I went out one night to chase some vandals away from
    an elderly care hospital that we used to live next to. It turns out
    these criminals were just the runts of the group, the remainder were
    probably about to try and pull a home invasion (with all the beating and
    gang rape that entails) on one of the houses further down. I chased them
    all off. The cops arrived back at my place, but instead of going up the
    road to whear there were eight people under the street light in a
    confrontation, they drove around to a parallel road. The six crims saw
    this, and advanced on the other witness. I put myself between him and
    them to give him time to get away. They left me for dead in the road.
    The grotty public hospital system left me with a couple of infections
    after surgery a few hours later. My counts started dropping immediately
    and within 6 months I was requiring blood transfusions.

    Quoted message said:


    Do you have access to hospice services in AU? I ask because people are
    often really slow to access them, but they are really, really helpful to
    everyone: you, your wife, your kids. (Do you have kids?)

    We probably won't make use of any hospice services. When the time comes,
    we'll move to transplant, and I will likely die a rather horrible death
    during that procedure or soon afterwards (I'm unable to take any opiate
    based painkillers due to side effects, so it's not going to be a
    pleasant or calm experience). There is still a small but significant
    chance that I will survive the procedure, so I'm going to take a shot at
    living when the time comes.

    Ari

    --
    spammage trappage: replace fishies_ with yahoo

    I'm going to die rather sooner than I'd like. I tried to protect my
    neighbours from crime, and became the victim of it. Complications in
    hospital following this resulted in a serious illness. I now need a bone
    marrow transplant. Many people around the world are waiting for a marrow
    transplant, too. Please volunteer to be a marrow donor:
    http://www.abmdr.org.au/
    http://www.marrow.org/

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