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Author Topic: so.  (Read 10145 times)

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Offline penguin

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« on: September 17, 2008, 08:32:27 PM »
So, indeed.

Multiple friends/random almost strangers in process of being screened for kidney match. 19 down, 17 more to go.
My brother not a match. My mother refuses to be screened. Something about me being dead to her already? I suspect her organs are pretty much pickled anyway.

I doing this for my brother mainly, his grieving process & needing to know we did all we could. Even if we do find a match, only been able to find one transplant team who would be willing (theoretically) to attempt. Something about ethics & guidelines & other legal stuff.  When pressed (repeatedly) they reckon v small chance of me even making it through surgery. So, a point they have it seems.

I don't know what I will do, unlikely event they find me one. I guess it comes down to how lucky do you feel? nothing much left to lose at this point, other than  perhaps control over the where. Like, hospital smell & machines beeping & unaware of the moment of my leaving. Or, home, my music, high thread count sheets, & someone I love able to touch n speak to me.

Strange place this, the sense of time running out and having still so many things left to say. And yet nothing really, or maybe just not words enough in my possession to say them. The knowing that all of it, all of it will continue even when you do not. The letting go of all of the I wish 's and I should 's and just once more I would like 's, like cutting balloon strings, one by one by one.

I wrote a letter, kinda simultaneous hello and goodbye. To a small person I gave away many years ago, in a different, mixed up time, coerced & confused. So that if one day she comes looking (they nearly always do?) there will be something more than empty space to find.
I told her a bit about me, who I was, what I did. About walking away from all of the weight of the past, and the people I met and the things that I saw. About my music, my books, the adventures I went on. How white hot the sand was at Kilifi; the electric charge energy of thousands, amandla! , clenched fists raised; & how I'll take Ravenscourt park over Hyde or Holland any day.
About how I never did anything very grand or important, but I (hope) I did some things right, (hope) I mattered to some people.
I told her about the beautiful soul that is my brother, & how he will be there if needed, to put together some of the pieces & help make sense of it all. About all the inadequacies of sorry , and how (just once) I would have liked to know the feeling of saying her name out loud, and whether her eyes smile when she laughs.

mostly though, I just said I wish you all the love that there is to be found in this world.

(i hope) that will be enough.

Harsh place, beautiful place, hello-goodbye kinda place, this world. And still always, with all of me, I can say I am glad for having been in it.


Offline Blixer

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  • Posts: 712
Re: so.
« Reply #1 on: September 17, 2008, 08:56:16 PM »
Kate,  A very touching post.  You will be in my thoughts and prayers.
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline MOONLIGHT1114

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  • Cheech 2.2.94 - 4.23.10 We miss you so much!
Re: so.
« Reply #2 on: September 17, 2008, 09:29:32 PM »
Hi Kate~

I am in tears after reading your post.  I had no idea you were waiting for a kidney.  Here I am, worried about being able to stand up, and you're waiting for a damn kidney.  It makes me angry that you have to go through this.  :(   Please know that I am thinking of you tonight.

Much Love,

HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline atlq

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Re: so.
« Reply #3 on: September 17, 2008, 10:02:58 PM »

I'm new here, so I don't know you, but that doesn't matter.

I will be thinking of you tonight also. All the best......
Keep up the good work....   And God bless you.
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline Queen Tokelove

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Re: so.
« Reply #4 on: September 17, 2008, 10:14:03 PM »
I wish I could give you one of mine, if it was possible, I would do it in a heartbeat 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 AlanBama

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Re: so.
« Reply #5 on: September 17, 2008, 10:19:49 PM »
Dear Kate,

You're very much in my thoughts and prayers this evening.   And yes, you do matter, very much.

with love,

Alan  :'(
"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 minismom

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  • Quocumque jeceris stabit
Re: so.
« Reply #6 on: September 17, 2008, 10:53:46 PM »
Sweet Kate, I'm not sure what to say or even if anything I said would come close to adequate.  We love you very much, the Wee One and I, and pray for you and Matthew every night.  I wish you so much peace and love and happiness.  I'm sure that where ever you are or where ever you go, there will always be plenty of Jell-O.

« Last Edit: September 18, 2008, 07:54:59 AM by minismom »
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline BT65

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Re: so.
« Reply #7 on: September 17, 2008, 11:29:03 PM »
Wow Kate.  Your post touched me deeply.  I hate that you're in the situation you're in.  If I could, I would make everything alright for you.  You do important things all the time, like when there's a question about a symptom or med, you're here with spot-on answers.  And the pm's you've sent mean so much to me.  You're truly a being of light in my world and I love you, really.
  Said with a tear,
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline komnaes

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Re: so.
« Reply #8 on: September 17, 2008, 11:47:51 PM »

My thoughts are with you. Please accept this big cyberhug..

Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline shadowfluid

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  • Mike
Re: so.
« Reply #9 on: September 18, 2008, 02:25:48 AM »

My thoughts are with you....sending you good vibes. -Mike
Jan 08       321/23%  VL 92,000 (very mild shingles)
Feb 1 08    Start Truvada+Viramune
March 08    470/33%  VL 320
mid-May     Start Reyataz/Norvir/Truvada
June 08      571/ 40%     VL   80
August 08   585/ 33%     VL >50
Nov  Lab error!!!!!!!!wah.
Jan 09        535      Undetectable
March 11     756

Offline auspoz

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  • Posts: 178
Re: so.
« Reply #10 on: September 18, 2008, 03:12:34 AM »
My thoughts are with you Kate. Thank you for sharing your thoughts so honestly.

I hope for the best for you.

« Last Edit: September 18, 2008, 03:14:18 AM by auspoz »

Offline keyite

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  • Posts: 514
Re: so.
« Reply #11 on: September 18, 2008, 03:32:37 AM »
What a predicament and what a shame your brother wasn't a match. I'll be hoping a suitable donor organ emerges in time..

Offline joemutt

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Re: so.
« Reply #12 on: September 18, 2008, 04:35:22 AM »
Kate, I will have you in my thoughts, I wish you strength,
I wanna ask if there's something  can do but I realise it's like
an expression of my feeling of being unable to help with what you go through. :'(

Offline newt

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Re: so.
« Reply #13 on: September 18, 2008, 07:49:19 AM »
sorry is too small and so is I wish you all the love that there is to be found in this world

perhaps that line in a song I would rather bet my life against the rising of the sun (again) is the right size.

can a clanger whistle be thoughtful and angry at the same time?


- matt
"The object is to be a well patient, not a good patient"

Offline Dachshund

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Re: so.
« Reply #14 on: September 18, 2008, 08:45:27 AM »
I just said I wish you all the love that there is to be found in this world.

I know an old man with a wiener dog wrapped in paw-printed flannel who knows love through your friendship.

Please put my hand on sweet Matthews head and give him a rub.


Offline jennynyc7

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  • Posts: 146
Re: so.
« Reply #15 on: September 18, 2008, 08:48:12 AM »
kate- I am new here too and this is the first post I can recall reading of yours but it touched me deeply. I too am thinking of you and hope that you stay well.

1/3/08-ARS began
Initial Vl=99000
2/14/08-began Truvada/Reyataz/Norvir
3/01/08=Swapped Reyataz for Viramune
5/1/08:     vl= undetectable
10/24/08:  vl=undetectable
                cd4=1172 (55%)

12/4/08:    vl=254 (hopefully just a small blip)

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: so.
« Reply #16 on: September 18, 2008, 09:02:10 AM »

I'm so glad you've had the opportunity to write that letter to the small person. I'm sure she'll cherish it.

And yes, you have mattered to people and you continue to do so. You've touched the lives of and helped so many, perhaps more than you'll ever know.

Sending you much love and strength - for Matthew too.

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 Florida69

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Re: so.
« Reply #17 on: September 18, 2008, 09:15:12 AM »
Kate, although I don't know you, I am sending you well wishes, regardless how minuscule they may sound, compared to your struggles.  I am so sorry, I hope and will say a prayer that you find yourself in a better circumstance soon.  Big HUGS.... D
Nothing in the world can take the place of Persistence. Talent will not; nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent. The slogan 'Press On' has solved and always will solve the problems of the human race.
Calvin Coolidge

Offline Iggy

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Re: so.
« Reply #18 on: September 18, 2008, 09:24:46 AM »

This is one of those times that I feeling foolish for even attempting to respond to a post as it seems nothing I know or want to say is adequate.

But I can't not acknowledge your post.

You have Jeromy and my love and thoughts.

Offline Alain

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  • I am.
Re: so.
« Reply #19 on: September 18, 2008, 10:03:54 AM »

I feel lost trying to find something proper to say, except perhaps that I am in awe and deeply touched by your inner strength and powerful words.

I am humble and so grateful to have known you a little.

Hope. I am hoping for the best possible outcome.

Sending you energy and courage for you to carry on.


Offline bear60

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Re: so.
« Reply #20 on: September 18, 2008, 11:20:05 AM »

You continue to inspire us and ... I hope you can continue to do that.

Poz Bear Type in Philadelphia

Offline HopeandCope

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Re: so.
« Reply #21 on: September 18, 2008, 11:30:17 AM »
You did do something "grand and important".  You wrote that letter. 
Hope and Cope Support Site
A Safe Place for Families & Friends of HIV+ People

Offline Miss Philicia

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Re: so.
« Reply #22 on: September 18, 2008, 11:48:34 AM »
Dearest Kate,

I read this last night when you first put it up, but couldn't think what to say.  I guess I'm just really over it all that you are dealing with so much.

I googled "Ravenscourt Park" and it looks divine, so I'll just say I'm thinking of you in that place.


"Ive slept with enough men to know that Im not gay"

Offline Bucko

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    • The Spin Cycle
Re: so.
« Reply #23 on: September 18, 2008, 12:42:04 PM »

Your effortless grace in this situation shines as an example to which we can only aspire. I sit here humbled and deeply moved.

Please accept the love we offer as dim recompense for business left undone.
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline Peter Staley

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Re: so.
« Reply #24 on: September 19, 2008, 01:53:06 PM »
Kate -- I don't think I've ever been so moved by a post in these forums.  Your honesty, your fears, and your love rang loudly.  I hope that you find and fight for a transplant.



Offline Roie

  • Member
  • Posts: 263
Re: so.
« Reply #25 on: September 19, 2008, 03:10:46 PM »
Beatifully written Kate.
I dont know what to say except hang in there.
Praying for you dear,

Cruise on down the High Way

"When people who are not ready jump in, things can go horribly wrong. For most of us, there is always time to take a deep breath, consider one's options and make a careful, sound decision based on clinical fact, not emotion."

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: so.
« Reply #26 on: September 19, 2008, 08:36:35 PM »
A stranger, our few exchanges motivated by your compassion, I wish there were some way to convey strength.

Hold your brother tight.

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline auspoz

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Re: so.
« Reply #27 on: September 19, 2008, 11:33:52 PM »
Just wanted to say I'm thinking of you still Kate, and sending good thoughts your way.


Offline rondrond

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  • 22 years HIV+ yet a yard could be the death of me
Re: so.
« Reply #28 on: September 20, 2008, 01:19:22 AM »

Harsh place, beautiful place, hello-goodbye kinda place, this world. And still always, with all of me, I can say I am glad for having been in it.



Thinking of you and hoping all is well.
"I'm not done yet"....Glen Campbell

"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Aug09 Diagnosed: COPD

Tcells 700

Offline #1 mom

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Re: so.
« Reply #29 on: September 20, 2008, 05:06:23 AM »
I don't know you, but I want to tell you how touched I was by your post. You'll be in my thoughts and prayers and I wish you peace.

Offline David_CA

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Re: so.
« Reply #30 on: September 20, 2008, 09:13:44 AM »
You're an amazing woman.  What you've written is both inspiring and touching.  Here's thinking of better times for you.  Take care.

Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Life

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Re: so.
« Reply #31 on: September 20, 2008, 12:47:10 PM »
Kate, please hold on to that peace, that serenity within yourself....

Offline prayerblue

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Re: so.
« Reply #32 on: September 20, 2008, 04:32:18 PM »
Please, Ms. Kate... I don't even know you but you're an inspiration to even me... don't give up hope...

Offline penguin

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Re: so.
« Reply #33 on: September 20, 2008, 04:48:08 PM »
thank you  is another too-small word, for all of your beautiful replies and messages and calls. internet, I always used to think it was just one dimensional flat screen-ness. sometimes, sometimes I am glad to be proved wrong.

takes special people, proper star people, to not flinch or recoil from all the sadness and discomfort and fear this stuff brings. I have found people like that through these forums, and they have my love always.

for those who asked, screening results should be in over the next 3-4 weeks. we shall see.

(to my no 1 best clanger island boy, I say… purple blossom avenues, n. cornwall tents, race you to the top at hillend… those ones, I keep safe. those ones, I am not letting go)

thank you all, again - kate x
« Last Edit: September 21, 2008, 05:15:40 PM by penguin »

Offline Dragonette

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Re: so.
« Reply #34 on: September 21, 2008, 05:50:25 AM »
Dear Kate,

I have read your post with so many feelings a couple days ago but I didnt yet know what to write. So, just the truth: I never miss any of your posts. And although we rarely communicate, you've made a deep impression on me since my first day on poz.com and my first months as a poz. I regret so much that I didnt get to meet you in person. I dont know what else to say except this subjective little speech. And also that I am hoping, praying, with all my heart for you.

« Last Edit: September 21, 2008, 05:53:41 AM by Dragonette »
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Cliff

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Re: so.
« Reply #35 on: September 21, 2008, 04:02:00 PM »
Hi Kate,

Thank you for keeping us up to date.  I know you have your special pals here, but truth be told lots of us care for you and are hoping for the best.  One never really knows what to say in these situations, but I suppose something always trumps nothing.

I hope for the best and that you find some peace.

Take care


Offline manchesteruk

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Re: so.
« Reply #36 on: September 22, 2008, 06:38:49 PM »

I've been trying to think of something to write here but I just can't find the words.  People on here have done a much better job of that than I could do.  I just wanted to let you know that you are a very special person and you are in my thoughts.

Chris xx
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline anniebc

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Re: so.
« Reply #37 on: September 22, 2008, 07:08:57 PM »
Hi Kate

I too am lost for words, remember the painting I did for you awhile back, well I now have it on display in my art room, so please know that you are in my thoughts everyday.

Jan :-* :'(

[attachment deleted by admin]
Never knock on deaths door..ring the bell and run..he really hates that.

Offline Robert

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Re: so.
« Reply #38 on: September 22, 2008, 07:42:42 PM »

Hi penguin.....

this is the donkey speaking.  If I knew 'penguinese' I'd flap my waddles and make you smile.   I'm hoping for the best.


Offline prayerblue

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Re: so.
« Reply #39 on: September 25, 2008, 07:07:30 PM »
sorry to bring this back up, but are you doing better now? any news or good outlooks? i'm really hoping and praying for you ms. kate...


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