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Author Topic: The Countdown Begins  (Read 7634 times)

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Offline bear60

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The Countdown Begins
« on: August 30, 2009, 12:31:45 PM »
I am starting a new thread for Bob since he has just been placed on a list for a new liver.  So begins a new chapter in his life. 
This is SUCH GREAT NEWS I can hardly contain myself.
Poz Bear Type in Philadelphia

Offline BT65

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Re: The Countdown Begins
« Reply #1 on: August 30, 2009, 05:33:53 PM »
Oh, that's great news Joel!  He must be thrilled!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline anniebc

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Re: The Countdown Begins
« Reply #2 on: August 30, 2009, 06:12:31 PM »
Wonderful news Joel...thinking of you all and sending good thoughts..give Bob a big hug for me and tell him to hang in there.

Love
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline bear60

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Re: The Countdown Begins
« Reply #3 on: August 31, 2009, 09:29:19 AM »
Betty:
Thrilled isnt the word exactly....seems he is really scared.  Who wouldnt be.  If he gets offered a liver and accepts....there is no turning back.  Its a huge commitment, a big decision.  And it will mean he has to stay in Pittsburgh for many months.

Jan I will give Bob a hug for you when I see him.
Poz Bear Type in Philadelphia

Offline sharkdiver

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Re: The Countdown Begins
« Reply #4 on: August 31, 2009, 10:00:25 AM »
Big Hugs to you guys!

Offline aztecan

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Re: The Countdown Begins
« Reply #5 on: September 01, 2009, 09:28:34 AM »
Hey Joel,

I am very happy for Bob, but I would be nervous if I had to make this decision too.

Big cheers for you all.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline AndyArrow

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Re: The Countdown Begins
« Reply #6 on: September 04, 2009, 02:41:31 AM »
Good luck to Bob whatever happens and whatever he chooses to do.  He's lucky to have such good friends like you.  Let him know we are all pulling for him!

Hugs!
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline Lakis

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Re: The Countdown Begins
« Reply #7 on: September 07, 2009, 01:24:18 AM »
Great news Joel. All the best to yo'all.
Lakis

Offline BT65

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Re: The Countdown Begins
« Reply #8 on: September 07, 2009, 09:34:13 AM »
Joel, I can certainly understand why he would be scared.  It sounds like it could be a bit risky (the operation), and I'm sure it's a very long recovery period.  Of course, this may mean he lives longer also.  I'd have a hard time deciding, I know I would.  But, hopefully all will turn out well.  I'll be thinking of him, and hoping for the best.  And Andy's right, he is lucky to have you and Kurt as friends. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline unclespongebob

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Re: The Countdown Begins
« Reply #9 on: September 07, 2009, 09:54:49 AM »
 :)   that is great news    :)


                         peace bobby
friends are gods way of apologizing to us for our familys. / a real friend os one who walks in when the rest of the world walks out. / everybody wants to ride with you in the limo,but what you need is sombody who will take the bus with you when the limo breaks down./ one friend in a lifetimeis much; two are many; three are hardly possible.

Offline bear60

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Re: The Countdown Begins
« Reply #10 on: September 20, 2009, 10:38:32 AM »
No word yet on a liver.
  BUT I thought an update was in order because we all went to a big gay wedding yesterday and Bob was there.  He looked pretty well but said he had a hard time trying to decide whether to wear his pants over the tummy or under it.  I said...."well maybe you need to invest in some maternity clothes...ha ha."  He said ..."Yea a pretty pant suit" Ha ha
So his sense of humor is working at least.
Poz Bear Type in Philadelphia

Offline unclespongebob

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Re: The Countdown Begins
« Reply #11 on: September 20, 2009, 08:02:40 PM »
  :D  hey joel tell bob that we are praying for him and give a hug from me   :D



                                   peace bobby
friends are gods way of apologizing to us for our familys. / a real friend os one who walks in when the rest of the world walks out. / everybody wants to ride with you in the limo,but what you need is sombody who will take the bus with you when the limo breaks down./ one friend in a lifetimeis much; two are many; three are hardly possible.

Offline bear60

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Re: The Countdown Begins
« Reply #12 on: October 14, 2009, 12:29:42 PM »
Today, October 14th 2009.
For anyone who is following Bob's path towards getting a new liver, there is no news to report other than that he has gotten his handicapped persons ID that you can hang on the rear view mirror.  Since Kurt takes Bob shopping and on errands as well as to the hospital or doctors for treatments, this has been a real step in the right direction.  It comes under the catagory: "small steps", or "one day at a time."
Otherwise Bob seems to be holding his own.
Thanks to all of you who have sent him your good wishes and positive thoughts.

Joel
Poz Bear Type in Philadelphia

Offline bear60

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Re: The Countdown Begins
« Reply #13 on: November 07, 2009, 10:05:46 AM »
Everything about HIV/AIDS is like living in slow motion.  Things seem to take forever.  The latest update on Bob is that he has been denied by Medicare....yes Medicare.  They say he is emaciated and a bunch of other stuff.  
He weighs 155 which is not bad. Yes he has lost muscle mass and looks thin except for a huge belly, but other than that he looks pretty good.  He was at the wedding of two guys who are friends and the woman we went with said she thought he "looked pretty good".  That, after I prepared her for the worst. So here is another example of someone near death, who "looks pretty good".  He should, he is taking good care of himself and has 24 hour service from a group of friends ( including his partner).  Thats another sore point: he wanted to get a home care aide but they wouldnt give him hours that were suitable.  35 hours a week translated into: 5 hours here, 3 hours there, etc.  When what he needed was 8 hours straight.
So, even tho Bob is on a transplant list in Pittsburgh, he is still not on any fast track to a transplant.  His partner is going to hire a lawyer.
« Last Edit: November 07, 2009, 10:36:50 AM by bear60 »
Poz Bear Type in Philadelphia

Offline Ann

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Re: The Countdown Begins
« Reply #14 on: November 07, 2009, 10:27:49 AM »
Oh Joel, your news is so discouraging. Poor Bob - my heart goes out to him. I can't believe he's been denied by Medicare. That's just so wrong and infuriating.

I'm still sending Bob and his partner love, light and healing energy on a regular basis - I only wish I could do more, something more practical. I hope a lawyer can help, and in a timely fashion.

Hugs to all involved...

Ann
xxx
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline bear60

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Re: The Countdown Begins
« Reply #15 on: November 07, 2009, 10:36:02 AM »
Thanks Ann.  Its very discouraging.
His partner is doing the best he can.  He has even bought a NEW car so that the guy doing the bulk of the caregiving (who does not own a car)  can have transportation. We trade the car off  with him when Kurt needs to go sit with Bob and I need our car.  It works.
Poz Bear Type in Philadelphia

Offline Jeff G

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Re: The Countdown Begins
« Reply #16 on: November 07, 2009, 10:36:58 AM »
Hi Joel . I hardly know what to say . Just wanted you to know I will be thinking of you guys and saying a prayer .

Offline Miss Philicia

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Re: The Countdown Begins
« Reply #17 on: November 07, 2009, 11:16:27 AM »
I'm thinking of your friend, Joel.
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: The Countdown Begins
« Reply #18 on: November 07, 2009, 11:52:18 AM »
Wow, Joel.  That's just heartbreaking.  I certainly hope Bob's partner can get a good lawyer who can help, and soon!  Thinking of everyone in Bob's situation-
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AlanBama

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Re: The Countdown Begins
« Reply #19 on: November 07, 2009, 12:29:40 PM »
Keeping Bob in my prayers, Joel....
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline rondrond

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Re: The Countdown Begins
« Reply #20 on: November 08, 2009, 01:21:41 PM »
I am grinding my teeth with you, Joel. We are all just living in the Twilight Zone: nothing is as it should be.

The attorney should take a lot of the stress of filling out forms and keeping up with replies off Bob and his partner. If it wasn't for my advocates, I would still be sitting in the middle of the floor surrounded by piles of paperwork not knowing what to do.

The hoops that caregivers go through to get the services for their loved ones is another topic and could cover chapter upon chapter of anxiety, grief , anger and sometimes: success.
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline bear60

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Re: The Countdown Begins
« Reply #21 on: November 08, 2009, 01:29:35 PM »
"The hoops that caregivers go through to get the services for their loved ones is another topic and could cover chapter upon chapter of anxiety, grief , anger and sometimes: success. "...quote

Aint it the truth.
Poz Bear Type in Philadelphia

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: The Countdown Begins
« Reply #22 on: November 10, 2009, 10:01:37 PM »
Hey Joel,

Damn frustrating. I am glad Bob's partner is going to hire a lawyer.

I will keep Bob, his partner, and you and Kurt in my energy flow - and in my thoughts.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline jm1953

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Re: The Countdown Begins
« Reply #23 on: November 15, 2009, 06:25:43 PM »
Joel,

Like the other members I'm sorry things are not moving smoother for Bob.  I'm sorry a lawyer will have to get involved but sometimes, unfortunately, we have to go that route. 

My thoughts and prayers are with all of you. 

jm1953
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline Miss Philicia

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Re: The Countdown Begins
« Reply #24 on: November 16, 2009, 10:02:32 AM »
Joel, should I assume that you and Bob's partner know and/or are utilizing the services of the AIDS Law Project of Pennsylvania?  I probably should have asked earlier.

http://www.aidslawpa.org/
"Iíve slept with enough men to know that Iím not gay"

Offline bear60

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Re: The Countdown Begins
« Reply #25 on: November 16, 2009, 10:10:25 AM »
David
I'll check on it but these guys are pretty savy.

Thanks for your concern

Joel
Poz Bear Type in Philadelphia

Offline Miss Philicia

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Re: The Countdown Begins
« Reply #26 on: November 16, 2009, 11:02:09 AM »
David
I'll check on it but these guys are pretty savy.

Thanks for your concern

Joel

I didn't know if money was an issue or not.
"Iíve slept with enough men to know that Iím not gay"

Offline bear60

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Re: The Countdown Begins
« Reply #27 on: November 16, 2009, 11:15:18 AM »
David
Well, money is always an issue.  But I dont the extent to which they can aford to go. So, I'll pass this info along.
I mean............... Bob is on disability, his partner is still employed HIV poz.  So, yea money could be an issue.

Joel
Poz Bear Type in Philadelphia

Offline AndyArrow

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Re: The Countdown Begins
« Reply #28 on: November 18, 2009, 07:54:11 AM »
Joel,

I'm just wanted to let you know that all of you are in my thoughts (especially Bob right now) ... I only wish there was more I could do to help. 

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline tednlou2

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Re: The Countdown Begins
« Reply #29 on: November 19, 2009, 01:25:10 AM »
I'm a newbie, but like to read through all the posts.  I was wondering if the liver was needed due to long-term HIV, the HIV meds, Hep C, or something else??

My doc keeps telling me with all the new drugs, I'll live a long and healthy life.  It gets discouraging reading about liver problems, skin problems, heart attacks and heart disease, PCP, thrush.  I know HIV neg people get some of these things, but it seems to happen a lot to HIVers. 

Have your lives been good mostly?  I'm just looking at all these things happening to people in their 40's, 50's, and 60's and wonder what kind of life I"m going to have.  I know I need to be thankful that meds are saving lives and this isn't a certain death sentence. 

Anyway, I wish Bob all the best.  I'm sorry to hear about problems he, or anyone, is having.   

Offline sharkdiver

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Re: The Countdown Begins
« Reply #30 on: November 19, 2009, 02:12:48 AM »
Hey there Tedniou2

I know you mean well with your well wishes for Bob,  but please don't post questions in LTS

Thanks

Offline tednlou2

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Re: The Countdown Begins
« Reply #31 on: November 20, 2009, 01:31:19 AM »
Sharkdiver:

I don't want to cause an issue here.  My post obviously offended you enough that you would take the time to post something to me.

I read through the rules of LTS.  It said it is for people who've been living with HIV for several years to decades.  It says no one will be excluded.  I've had HIV for 9 yrs--even though I've only been diagnosed for just 1 year.  I'm looking for all the info about this virus that I can get.  If my posting really inconvienced anyone, I apologize.

Offline sharkdiver

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Re: The Countdown Begins
« Reply #32 on: November 20, 2009, 01:41:31 AM »
you could read this

http://forums.poz.com/index.php?topic=25182.0
 or this
http://forums.poz.com/index.php?topic=23059.0

but lets get back on track with Bear60's post

Offline Robert

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Re: The Countdown Begins
« Reply #33 on: November 20, 2009, 12:28:39 PM »



Hi tednlou2

First of all, no apology necessary.

YOu are certainly entitled to post here along with anyone else.  Don't let anyone tell you differently.

Sharkdiver.

Take a look at the Welcome Thread for Long-Term Survivors.

It specifically says,

Quote
We are not excluding anyone  participating here, but we do ask that you be mindful of the special needs for which this particular Forum has been established.(emphasis added.)
 
..........

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: The Countdown Begins
« Reply #34 on: November 20, 2009, 12:51:25 PM »


Hi tednlou2

First of all, no apology necessary.

YOu are certainly entitled to post here along with anyone else.  Don't let anyone tell you differently.

Sharkdiver.

Take a look at the Welcome Thread for Long-Term Survivors.

It specifically says,
 

This has been a hotly debated subject for some time now. Robert, did you look at the threads Shark linked to?

If anyone wants to continue debating the issue of who should and who should not post in LTS, then PLEASE, show a little respect and either use the first thread linked to in Shark's post or start a new one. DO NOT CONTINUE THIS HIJACK IN THIS THREAD. Like I said, show a little respect.

Personally, I don't see why people cannot respect the wishes of the LTSers and just refrain from posting in this forum. There are plenty of other forums one can post in - and other forums can be used to ask questions directed at LTSers.

I don't want to see another post in this thread on the subject. This thread is about Joel's friend Bob - it's not about where people should or should not post.

Thank you for your cooperation.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Miss Philicia

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Re: The Countdown Begins
« Reply #35 on: November 20, 2009, 12:56:26 PM »


Hi tednlou2

First of all, no apology necessary.

YOu are certainly entitled to post here along with anyone else.  Don't let anyone tell you differently.

First of all, tednlou2's post was a thread high jack as regards bear60/Joel's issues with his friend Bob.  That is frowned upon.  And as a newly diagnosed individual, he should seek his worry based concerns in this thread, but should do so in Living With.  Why should members of LTS have to spend days soothing his concerns here when they are dealing with Joel's friend, and having the thread hijacked?

While it's fascinating that you, Robert, have an evident personal animosity towards members of the LTS forum (are you one yourself may I ask?) it's certainly not productive for you to traipse in here twice a week to assert your schoolmarm proclivities towards the rest of the board member who come here if only to not spend their hours replying to the endless posts of disclosure and unnecessary worrying as found elsewhere in these forums.  If you wish to do this, then feel free.  Or you could go spend 80% of you time in your AMG forum.

Frankly you're cherry picking one sentence out of Tim Horn's welcome thread, and I'd invite him to clarify on what he meant by that phrase.  The larger issue is that if LTSers feel unsafe with newly diagnosed board member posting her then Horn's other part of the Welcome thread take on greater importance, would you not agree?  tednlou2 is welcome to take his issues and concerns, and reference this thread, and start his own thread for discussion in Living With, and this was something that was long ago discussed and agreed up in another older thread.  Otherwise it's like opening a can of worms and I dare say renders this section of the forum useless, and if that's the case I'd like to move that we shut the LTS section of the forums down completely, something that might make you personally happy if you most recent post are indicative.

Sounds to me like you have a bit of a personal bias going on as regards to members of the LTS forum.
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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Re: The Countdown Begins
« Reply #36 on: November 20, 2009, 01:16:10 PM »
This has been a hotly debated subject for some time now. Robert, did you look at the threads Shark linked to?

This link is much better, as it was before the formation of the LTS section:

http://forums.poz.com/index.php?topic=11021.100
"Iíve slept with enough men to know that Iím not gay"

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: The Countdown Begins
« Reply #37 on: November 20, 2009, 01:18:16 PM »
Can we stop the hijack now?

Continuation of this hijack in this thread will result in Time Outs. If you want to discuss the "where to post" controversy, do so in another thread.

Yes, this is a warning. Enough is enough already.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: The Countdown Begins
« Reply #38 on: November 20, 2009, 10:15:50 PM »
David
Well, money is always an issue.  But I dont the extent to which they can aford to go. So, I'll pass this info along.
I mean............... Bob is on disability, his partner is still employed HIV poz.  So, yea money could be an issue.

Joel

Hey Joel,

Money is always such a problem with serious medical issues like this.

I will continue keeping you, Bob and the others in my thoughts - and will keep sending positive energy too.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline bear60

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Re: The Countdown Begins
« Reply #39 on: November 22, 2009, 05:02:11 PM »
Sunday the 22nd of Nov
Just wanted to let David know that Don has indeed talked to the AIDS Law Project and they are considering the case.  Unfortunately, it may turn out that Medicare has turned BOB down for the transplant due to OTHER problems besides HIV. ( Hep C to name one)
If this is the case the AIDS Law Project will not take the case.
Talk about a catch 22.
Poz Bear Type in Philadelphia

Offline BT65

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Re: The Countdown Begins
« Reply #40 on: November 23, 2009, 05:37:15 AM »
Oh Joel, I hope that's not the case regarding Medicare.  I'll be keeping Bob in my thoughts.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AndyArrow

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Re: The Countdown Begins
« Reply #41 on: November 23, 2009, 05:50:27 PM »
Joel,  I'm sorry to hear that Bob is still uncertain about what medicare will decide.  The waiting has to be driving everyone crazy.  I will be keeping you in my thoughts.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline bear60

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Re: The Countdown Begins
« Reply #42 on: December 06, 2009, 12:51:51 PM »
Dec. 6
Good news today.
  I just found out that the AIDS LAW PROJECT is indeed going to take Bobs case.  There is to be a hearing soon...as yet undetermined place.  Possibly Washington DC.  In the meantime Bob and Don will be preparing with legal counsel for this.
Poz Bear Type in Philadelphia

Offline BT65

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Re: The Countdown Begins
« Reply #43 on: December 06, 2009, 07:40:50 PM »
Great news, Joel!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline sharkdiver

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Re: The Countdown Begins
« Reply #44 on: December 06, 2009, 08:26:19 PM »
yeah!!!!!

Offline bear60

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Re: The Countdown Begins
« Reply #45 on: December 07, 2009, 04:05:51 PM »
Thanks Betty and Sharkie, this is going to be BIG.  Let me tell you.
Poz Bear Type in Philadelphia

Offline Miss Philicia

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Re: The Countdown Begins
« Reply #46 on: December 10, 2009, 10:05:30 AM »
I'm glad to hear that the AIDS Law Project is working so well for Bob.  I'd heard only positive things about them from a couple guys in my long term survivor support group.  Indeed, hearing of such local entities is one of the major reasons I go to this group. 
"Iíve slept with enough men to know that Iím not gay"

Offline AndyArrow

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Re: The Countdown Begins
« Reply #47 on: December 10, 2009, 07:56:46 PM »
I know it's only a small step forward but I'm glad to hear they are taking his case and I'll keep him in my thoughts.
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

 


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