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Author Topic: Update: Doctor reccomended hospice yesterday  (Read 11141 times)

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Offline sweetasmeli

  • Member
  • Posts: 1,052
  • Love what you are...
Re: Update: Doctor reccomended hospice yesterday
« Reply #50 on: June 01, 2007, 05:14:13 PM »
June 1, 07
Hi Everyone,
You are all so amazing, I can't really put it into words. I can feel, in my heart, your thoughts and the power of those thoughts. It is extraordinary. I am so blessed to have known all of you, experienced your joys and laughter. I am a better person for all of you.

I had the amazing joy of talking to our Miss Melia today on the phone. She is wonderful, kind, empowered, funny...Hearing her voice, and talking to her has helped me gain more insight into the past few days.

I am not ready to give up. My heart is not ready. My body may fail me, and I imagine that is what will happen, but I am not going to go gentle into the good night. I might be in denial about what will happen over the next few months, and maybe that is a way of coping right now, and I think for now that is okay.

I called the doctor, and told them I am still going to take my hiv meds, and for now use pain meds as needed at home. When hospice starts, I want, at least for now, to remain at home.

What my body does, it does, but hiv is not taking my heart or my spirit. It is going to have to fight me for those, and it better be prepared, because I can be a real bitch when I want to be.

Melia, thank you again. You were my angel today.

Christine

I've quoted all of your update so that no-one misses it in your edited original post.

Dear Christine

No need for thanks. You lifted my heart today too. You are a sweet, extraordinary and courageous lady.
It was an honour chatting with you...and boy did we chat! :D

Looking forward to our next one...meanwhile, give some more thought to that 'goal' you mentioned. ;)

Love & hugs
Melia xxx
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline Dachshund

  • Member
  • Posts: 5,921
Re: Update: Doctor reccomended hospice yesterday
« Reply #51 on: June 01, 2007, 05:21:49 PM »
Christine your spirit and light shine brightly for all of us to see...you make us better people just because we know you. It's hard to keep a good woman down as the old saying goes...and everyday you prove it.

Hal

Offline anniebc

  • Member
  • Posts: 5,886
  • AM member since 2003
Re: Update: Doctor reccomended hospice yesterday
« Reply #52 on: June 01, 2007, 06:17:28 PM »
Quote
What my body does, it does, but hiv is not taking my heart or my spirit. It is going to have to fight me for those, and it better be prepared, because I can be a real bitch when I want to be.

And they say we are the weaker sex.. :D..your update cheered me up no end, thank you for keeping us informed, you know you have many supporters here, and everyone is sending you their thoughts and prayers...so many hands to hold on to.

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

Offline kentb

  • Member
  • Posts: 75
Re: Update: Doctor reccomended hospice yesterday
« Reply #53 on: June 01, 2007, 10:19:27 PM »
Christine, warm thoughts and wishes coming your way from Atlanta, Ga.  A very special prayer and place in my heart for you just now,

Kent

Offline Basquo

  • Member
  • Posts: 3,235
Re: Update: Doctor reccomended hospice yesterday
« Reply #54 on: June 01, 2007, 11:12:27 PM »
I try to be an uptight S.O.B. during the daylight, but I read this post this morning at my work desk and I went numb for the rest of the day. I even had a meeting, then had to text-page a doctor with "u need2get ur ass in here & work on ur charts," because she's such a pup she has to be texted like a kid, but I was numb against the sadness I felt.

I understand that you might have felt ready, but if your heart is telling you to hang on, I am joyous for that!  

Trek on, Baby, and keep telling us what's going on.

Quote
And they say we are the weaker sex..

Jan's words ring true, but I think weaker sex is when you only have the energy to say "F--- you," instead of pushing them off of you.

Be a duck. Let the water "roll off" of you.

I admire your courage to state what you are feeling, and even more for being a duck. You are an inspiration, Christine!

Love, and Best,
Creighton

Offline Lis

  • Member
  • Posts: 593
Re: Update: Doctor reccomended hospice yesterday
« Reply #55 on: June 01, 2007, 11:36:43 PM »
find peace sweet spirit... love has you in her wings....
poz 1986....

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: Update: Doctor reccomended hospice yesterday
« Reply #56 on: June 02, 2007, 04:39:04 AM »
Like Creighton said, Dear Christine, You are an inspiration to so many of us here. When I was first diagnosed in '84 I was told I was gonna die. My shrink and I were talking. I asked her how long I had to live.

"Jeff ole buddy" she paused and looked me square in the eyes. "Expect to live forever." Those words were comforting me ever since. I hope it helps you my dear.

You are respected and loved by many in here. You are awesome.

Loads of love to you sweet lady!
Positive since 1985

Offline Ann

  • Administrator
  • Member
  • Posts: 27,947
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Update: Doctor reccomended hospice yesterday
« Reply #57 on: June 02, 2007, 06:46:37 AM »
((((((Christine))))))

Thinking of you...

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 heartforyou

  • Member
  • Posts: 1,101
  • I must be a survivor in many ways...
Re: Update: Doctor reccomended hospice yesterday
« Reply #58 on: June 02, 2007, 07:24:34 AM »
Dearest Christine,

First of all, know that you are loved here by every single soul.
I hope you can let us form a circle of love and light in which you can feel safe to go.
Think of it as a bright lifting energetic cloud that will embrace you, enlighten you and help you transit, when you are ready.
We are all connected, much more then we can possibly know with our limited knowledge.

Souls, spirits, hearts and above all energies never die. They only let go of their earthen shape, our body.

May you find the peace and the strength to make your transit in serenity.

We will all follow sooner or later and be reunited, free of HIV.

Sending my brightest, most healing, humble energy

In love

Herman

I have already asked my lover JP to be there for you.
May your transit be smooth and gentle. On your terms and in your time frame.
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline Jena

  • Member
  • Posts: 101
  • To God Be The Glory!
Re: Update: Doctor reccomended hospice yesterday
« Reply #59 on: June 02, 2007, 09:23:31 AM »
Christine
 Please know you are in my thoughts and my prayers. Remember one thing Honey, God never gives us more than he knows we can handle...
Love
Jena

Offline PositivelyYours

  • Member
  • Posts: 133
Re: Update: Doctor reccomended hospice yesterday
« Reply #60 on: June 02, 2007, 07:03:48 PM »
Hello Christine,

May the comfort of our Lord and Savior Jesus Christ give you comfort through these difficult times. Just know - All of us feel your pain and sorrow.  I just want you to remember this. "The grass withered; The flower fadeth, but the word of our God - Shall stand forever!"  Just pray precious and I know God does answer prayers!!!  We love you and I WANT YOU TO FIGHT UNTIL THE BITTER END!!!


I don't know what more to say right now. My hands are shaking and it is hard to type. I just wanted to let you all know things are not going well. I have decisions that need to be made.

i thought death would be different. More decisive, peaceful. But I find that it is not for me. The numbers, the lab results say one thing, my body screams enough, but my heart does not want to leave.

I don't know what to do. I am so tired of being sick, I've lost almost 20lbs in the past few months. A few months ago the doctor talked to me about doing things I have always wanted to do...do it now, don't wait. I wanted to see Disney World. I know it is silly, but I wanted to be a little girl again, and not be sick, and feel like magic and dreams are real. My husband made it happen. It was wonderful. I wasn't sick that week.

But it has gotten worse since then, more bad than good days. I didn't know if I should tell all of you. I don't want anyone to worry or be fearful.

I don't know what is the right thing to do. I just want it go away.

Christine

June 1, 07
Hi Everyone,
You are all so amazing, I can't really put it into words. I can feel, in my heart, your thoughts and the power of those thoughts. It is extraordinary. I am so blessed to have known all of you, experienced your joys and laughter. I am a better person for all of you.

I had the amazing joy of talking to our Miss Melia today on the phone. She is wonderful, kind, empowered, funny...Hearing her voice, and talking to her has helped me gain more insight into the past few days.

I am not ready to give up. My heart is not ready. My body may fail me, and I imagine that is what will happen, but I am not going to go gentle into the good night. I might be in denial about what will happen over the next few months, and maybe that is a way of coping right now, and I think for now that is okay.

I called the doctor, and told them I am still going to take my hiv meds, and for now use pain meds as needed at home. When hospice starts, I want, at least for now, to remain at home.

What my body does, it does, but hiv is not taking my heart or my spirit. It is going to have to fight me for those, and it better be prepared, because I can be a real bitch when I want to be.

Melia, thank you again. You were my angel today.

Christine
PositivelyYours

Diagnosed: 08/10/2006
08/31/06 CD4:240/VL:39,000
09/12/06 CD4:359/VL:50,000
11/16/06 CD4:509/VL:76,000 (Flu Shot)
02/13/07 CD4:270/VL:69,000
02/17/07 Developed the Shingles
02/20/07 CD4:326/VL (Not Tested)
03/20/07 CD4:484/VL:54,000
06/19/07 CD4:488/VL:51,000
09/18/07 CD4:372/VL:27,000
10/09/07 Took Flu Shot
12/18/07 CD4:408/VL:85,000
03/18/08 CD4:394/VL:116,000 (Still No Meds)
05/22/08 CD4:412/VL:63,000
08/13/08 CD4:362/VL:67,000
09/23/08 Took Flu Shot
10/15/08 CD4:340/VL:54,000
11/14/08 Started Atripla @ 9:45 p.m.
1/30/09 CD4:641/VL:<48 Copies
5/07/09 CD4:667/VL: Undetectable
12/02/09 CD4:759/VL: Undetectable
03/05/10 CD4:537/VL: Undetectable
03/16/10 Rec'd TB Skin Test, Pneumonia & Hep B Vac
04/15/10 Hep B & Tetanus Vac
6/10 CD4: 748 VL: Undet.

Offline Grinch

  • Member
  • Posts: 325
Re: Update: Doctor reccomended hospice yesterday
« Reply #61 on: June 02, 2007, 08:18:48 PM »
This saddens me greatly.  Peace to you and I hope for a chance to meet you on the other side.

Offline J220

  • Member
  • Posts: 587
Re: Update: Doctor reccomended hospice yesterday
« Reply #62 on: June 02, 2007, 11:34:44 PM »
I really don't know what to say, so I'll stick to what I usually talk about around here- clinical trials. I don't know in what city you are, but perhaps you may want to contact any of the locations handling Virionyx's PEHRG214 trial. There are 5 locations, Los Angeles, Miami, Dallas, Iowa City, and New York City. Check: http://clinicaltrials.gov/ct/show/NCT00385567?order=1 , and http://www.virionyx.co.nz/internal.aspx?mode=15&mast=mast7.jpg . I believe they had a compassionate release in the past which worked very well, hence their present trials. J. All my best to you, and hoping fervently to hear better news from you! J.

p.s. the following just came out on 6/1/07. I don't know if you are already taking any of the medications mentioned in the article, but I just wanted to share this info with you. Hope it helps!: http://www.sciencedaily.com/releases/2007/05/070531191057.htm
« Last Edit: June 02, 2007, 11:45:56 PM by J220 »
"Hope is my philosophy
Just needs days in which to be
Love of Life means hope for me
Born on a New Day" - John David

Offline northernguy

  • Member
  • Posts: 1,347
Re: Update: Doctor reccomended hospice yesterday
« Reply #63 on: June 03, 2007, 12:15:52 PM »
Christine, words kind of fail me at times like this, but I'm thinking of you.
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline penguin

  • Member
  • Posts: 747
  • The Penguin Whisperer
Re: Update: Doctor reccomended hospice yesterday
« Reply #64 on: June 03, 2007, 03:06:58 PM »
Christine, I'm sorry to hear things are so tough.

Most people, they think hospice/palliative care, they think last bus stop.

Me, I think of another team of health professionals, ace at managing complicated bundles of chronic symptoms - like fatigue, nausea, pain etc - & providing support for the emotional challenges that accompany, in whatever setting works best for you.

The fat lady, she ain't singing, throat's playing her up. When clouds seem heaviest, plan more trips to Disneyland. Or Sea World. Or wherever the most smiles are  :)

Kate x
« Last Edit: June 03, 2007, 03:08:42 PM by penguin »

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Update: Doctor reccomended hospice yesterday
« Reply #65 on: June 03, 2007, 04:14:43 PM »
Hi Christine,

We haven’t had contact before so please forgive my clumsy words.

I am saddened to learn about this stage of your life, but you're not gone yet and I am delighted to read that you will refuse to let HIV take your spirit. When I was diagnosed and the doctor told me to go home and prepare to die, for some reason I felt determined at that moment that no matter what I had to face ahead that HIV would never take my spirit. That’s our essence, and it’s untouchable.

I believe that not all power can be seen, and so I pray that you will experience all those “Disney” moments and more for as long as your body lets you.

Strength and love (if I may) to you Christine,

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline James1941

  • Member
  • Posts: 29
Re: Update: Doctor reccomended hospice yesterday
« Reply #66 on: June 03, 2007, 05:17:43 PM »

I am not ready to give up.

Then, don't bloody well give up, keep fighting - and talk to me tomorrow, please.

James

Offline SoSadTooBad

  • Member
  • Posts: 248
Re: Update: Doctor reccomended hospice yesterday
« Reply #67 on: June 03, 2007, 06:19:06 PM »
Christine - may your heart live forever in those who love you, may your spirit fight until your last breath, may your soul find peace until we meet again. 

Sending you love and prayers of healing and support. 

Offline J.R.E.

  • Member
  • Posts: 6,964
  • Joined Dec-2003 Living positive, since 1985.
Re: Update: Doctor reccomended hospice yesterday
« Reply #68 on: June 03, 2007, 07:55:57 PM »
Dear Christine,

Sending lots of love and thoughts, and positive energy, your way.....



Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline Carolann

  • Member
  • Posts: 233
Re: Update: Doctor reccomended hospice yesterday
« Reply #69 on: June 03, 2007, 08:01:13 PM »
Christine,

Your update made me feel better. You are in my thoughts.  I am glad you have decided to keep fighting. Many healing hugs your way.

Love,

Carolann

Offline IzPoz

  • Member
  • Posts: 332
  • God, grant me the serenity...
Re: Update: Doctor reccomended hospice yesterday
« Reply #70 on: June 03, 2007, 08:05:54 PM »
Christine,

I'm afraid that my voice will be lost within this sea of loving people, but I wanted you to know that my thoughts are going out to you, and your family. Coming to this stage in your life must be difficult, yet so fulfilling. Know that your loved ones will always have you in your heart as they are in yours.

My thoughts, my prayers, go out to you.

Be well, and be at peace.
The reason angels can fly is that they take themselves so lightly. ~ Chesterton G. K.

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: Update: Doctor reccomended hospice yesterday
« Reply #71 on: June 03, 2007, 11:24:54 PM »
Christine~~

I'm glad to see you still have fight left in you. Keep it up! I was hoping you'd be feeling better and you seem like you are even if it's just a wee bit. I'm also glad that talking with Melia helped and thanks her for posting your reply because I did not see it. I will continue to pump out my lil rays of sunshine just for you! ;)
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline tsw923

  • Member
  • Posts: 174
Re: Update: Doctor reccomended hospice yesterday
« Reply #72 on: June 04, 2007, 12:16:49 AM »
Christine,

I have been out of touch on the forum for awhile.  I am so sorry to hear how things are going.  But I am happy to hear that you are still fighting!  I will keep you in my prayers and send my extra energy your way!

Ty
Help find a cure for leukemia, lymphoma, and other blood-related cancers by sponsoring me as I walk a 1/2 marathon as a part of the Maryland chapter of Team in Training.  To find out more and to donate, please click on the following site:  http://www.active.com/donate/tntmd/tswtntmd

Offline Lisa

  • Member
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  • Formerly known as sweetieweasel/Joined Nov. 2004
    • http://www.myspace.com/lisanowak58
Re: Update: Doctor reccomended hospice yesterday
« Reply #73 on: June 04, 2007, 03:13:24 PM »
My heart is with you Christine. Never let'em see you sweat!
I wish you grace and peace in the next part of your journey.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline catwoman

  • Member
  • Posts: 111
Re: Update: Doctor reccomended hospice yesterday
« Reply #74 on: June 04, 2007, 10:47:45 PM »
I am praying for you.

Offline WorriedWife

  • Member
  • Posts: 82
  • Our Little Gift From God
Re: Update: Doctor reccomended hospice yesterday
« Reply #75 on: June 04, 2007, 11:02:06 PM »
You are in my prayers christene!!!

Stacy
"Everything Happens for a Reason"

Offline cjc

  • Member
  • Posts: 1,011
  • Sweet Girl
Re: Update: Doctor reccomended hospice yesterday
« Reply #76 on: June 05, 2007, 05:58:39 AM »
Hello, I do not know what to say that hasn't already been said but I will keep you in my thoughts and hope things improve for you.  Cristy

Offline kentb

  • Member
  • Posts: 75
Re: Update: Doctor reccomended hospice yesterday
« Reply #77 on: June 08, 2007, 10:46:43 AM »
Hello Christine, it's Kent here.  I've been praying for you every day and often throughout the day.  If you have the strength and courage please let me/us know how you are doing.

warmest thoughts,

kent

Offline Ulong

  • Member
  • Posts: 43
Re: Update: Doctor reccomended hospice yesterday
« Reply #78 on: June 08, 2007, 12:00:11 PM »
Just adding my voice to all the others here....Thinking of you, and wishing you the best.

Offline newbernswiss

  • Member
  • Posts: 260
Re: Update: Doctor reccomended hospice yesterday
« Reply #79 on: June 08, 2007, 02:10:24 PM »
Christine,
Your courage, bravery and spirit are admired by all of us as you take on another of lifes challenges. Remember you are never alone. Be it family, friends, neighbors, emails from your POZ community forums pals, we are here to support you. For now rest, reflect and keep in touch with us.
As Always,
Clintoon

Offline david25luvit

  • Member
  • Posts: 1,409
  • Member since March 2005
Re: Update: Doctor reccomended hospice yesterday
« Reply #80 on: June 12, 2007, 08:29:07 PM »
Christine...

                 I was there when David went on hospice and the one thing for sure I learned from that experience was that giving up is not an option...
Once David gave up and God help me I saw it in his eyes.....I knew it was only a matter of time.  The power of positive thinking is now required.  Do
what you must to settle your affairs (I've done that already myself) but keep your courage and fight it sweetie.  Even if you don't feel like eating....
EAT.....even if you're tired and want to stay in bed....GET OUT OF BED AND MOVE if you physically able.  CONCENTRATE ON THE POSITIVE
and leave the negative for others to ponder.  Give it all you have and then some.....   And when the time comes and you'll know when it does...
Embrace it as you would a lover.  That's my advice...  You're in my prayers sweetheart :-*
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

Offline RICKY77531

  • Member
  • Posts: 104
  • just Chill
Re: Update: Doctor reccomended hospice yesterday
« Reply #81 on: June 12, 2007, 08:49:02 PM »
I pray to god that you get better......Godbless
06/2007   CD4 266  Vl 62000
06/2007   CD4 200  Vl 13495
07/2007   ATRIPLA
09/2007   CD4 323  VL Undetectable
11/2007   CD4 428  VL Undetectable
01/2008   CD4 357  VL Undetectable
04/2008   CD4 357  VL UNDETECTABLE
08/2008   CD4 402  VL UNDETECTABLE
11/2008   CD4 421  79 DETECTABLE..
2/2009     CD4 450  VL UNDETECTABLE

Offline ds4146

  • Member
  • Posts: 314
Re: Update: Doctor reccomended hospice yesterday
« Reply #82 on: June 12, 2007, 10:00:02 PM »
All I have to say is my thoughts are with!

Offline BKNYLivin

  • Member
  • Posts: 76
Re: Update: Doctor reccomended hospice yesterday
« Reply #83 on: June 13, 2007, 02:51:38 PM »
Don't know you, but I've read a lot of your posts and you seem like an amazing person. My thoughts and prayers are with you and your family!
Diagnosed 9/18/06
10/13/06 - CD4:449, 33%,  VL:>500,000
11/20/06 - CD4: 392  VL:425,000
02/08/07 - CD4: 361, 16.9% VL:133,000
02/13/07 - Started HAART: Atripla
03/08/07 - CD4:401, 23.8% VL:643
06/05/07 - CD4:614, 33.6% VL:225
09/14/07 - CD4:612, 37%  VL: <50
12/14/07 - CD4:582, 38.5% VL:<50
4/11/08 - CD4: 658, VL: <50
3/5/09 - CD4: 847, 49% VL: <50
7/29/09 - CD4: 965, 50.1% VL: <50
12/28/09 - CD4: 925, 49.2% vl <50
9/16/10 - CD4: 1011 vl: <50

 


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