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Author Topic: CAPTAIN CARL UPDATE....  (Read 3416 times)

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Offline CaptCarl

  • Member
  • Posts: 1,114
  • Located in the Palinsville subdivision, JesusLand
CAPTAIN CARL UPDATE....
« on: July 06, 2011, 03:27:22 AM »
Hello everyone here at the Forums. I wanted to give an update as to what's going on with me, as well as an apology for letting things languish and not doing it sooner. So firstly, to the apology:
 
I am sorry that it has taken as long as it has to get this out there. I know that a lot of people here have been worried about me. My partner Norm was keeping things updated through Dennis, but after a few days of that, things got so overwhelming that he couldn't keep up with all the updates to all the different people, the meetings with the doctors, hospital, family, etc, etc. I for my part was completely unable to help due to circumstances beyond my control (basically my mind had turned to a bowl of pudding, and I had the cognitive skills of such). It has taken quite a bit of time to be able to converse with people again, and even longer to figure out the little mysteries in life like how to use a cell phone or make the computer do anything more complicated than turn on. It is coming back to me finally, though I still can be completely befuddled by a clock from time to time. Typing on the computer also takes an enormous amount of time and concentration. What I have typed so far has taken close to an hour already. Even so, I woud like very much to apologize to all the people who wished me well, then were left hanging. I am sorry.
 
You have the basics of my trips to the hospital: Blood clot in one lung, suspected cancer in the other, and a return of the liver cancer for which I had a transplant almost three years ago. Everything happened so fast and went downhill so quickly. I was initially in the hospital for 2 weeks then sent home, but the fevers were constant, between 102-104, and I was still losing weight. When I first went in I weighed about 162 pounds, when I was admitted the second time, I was down to 138. The had to put a feeding tube in. Things went downhill fast fro there. They went to do a lung biopsy, but the sacs around the lungs were completely filled with fluid. I had a really vicious case of pneumonia that was taking me down hard, and when combined with the blood clot left me with almost no lung capacity whatsoever. I also started retaining water to the point that I now weigh a bit over 100 pounds MORE than I did when I checked into the hospital for the second time. Mostly from the abdomen down. Walking can be difficult due to the fact that one of the places I retained water is in my testicles which are now swollen to the point that they completely surround my dick, and make peeing something of an ordeal. The swelling is finally coming down, but I still need to carry "the boys" in my hands to prevent the pain from having all that weight pulling down. I have jury rigged a truss type arrangement so I can go for walks and not draw attention to myself.
 
The liver cancer had caused the ammonia levels in my body to skyrocket almost overnight. This is what caused the cognitive issues. I spent about two weeks with this being to the point of almost being completely gone on any thought process/ability to communicate level. It was like being underwater, and being able to see the surface. You could see what was going on, see what others were doing, and to a small degree understand how it all pertained to you, but be completely incapable of being able to become a part of it. Every once in awhile, for a few minutes, or maybe even an hour or so, you'd rise to the surface and be completely lucid. Enjoy a little conversation with your partner or a  nurse. But eventually though, you'd go back down into the water. The hardest part was that you knew  that something was wrong, that you had it in you to be normal. But you just couldn't figure out how to make it happen, where the blockage was that was preventing you from being a regular person. There was nothing you could do about it. Meanwhile, the fevers are still tearing you up, you're still in really bad shape, and during one of your lucid moments, you hear a doctor tell your partner that you only have 1-3 days left, and because it's a lucid moment, you know exactly what that means. The only thing I could think was that the 1-3 days couldn't pass quickly enough for me
 
It was about then that the decision was made to take me off of all of my meds, and to transfer me to Hospice. The moved me here a bit over a week ago. I guess that the change of environment, combined with the ceasing of all meds did the trick, because I have gotten better a bit every day. Things have progressed to the point that they will actually be sending me home at the end of the week. I'm a bit hesitant about this, but they will be assisting with home hospice visits, as well as housekeeping visits several time a week. I don't want Norm killing himself trying to take care of me, and won't go home unless he has plenty of back-up.
 
Sorry that it got so long, but there was a lot to tell. Again, I want to thank everyone here that showed their support when the shit was hitting the fan. Every contact from you guys helped me to get through it a little easier. And to all of you I am Thankful.
 
Carl

The only thing I can do straight is shoot..

Offline komnaes

  • Member
  • Posts: 1,893
Re: CAPTAIN CARL UPDATE....
« Reply #1 on: July 06, 2011, 03:43:23 AM »
Nothing much to add that hasn't already been said, Capt.

You know we love you.. and here's one BIG cyberhug.

And don't scare the nurses and other patients by the way...  ;)

Shaun
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 spacebarsux

  • Member
  • Posts: 1,350
  • Survival of the Fittest
Re: CAPTAIN CARL UPDATE....
« Reply #2 on: July 06, 2011, 04:08:22 AM »
I have been following your threads Capt.

Life is just so unfair sometimes. You're in my thoughts.

Best.
« Last Edit: July 06, 2011, 04:22:18 AM by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline hope4love

  • Member
  • Posts: 56
  • Every Problem has a Solution.
Re: CAPTAIN CARL UPDATE....
« Reply #3 on: July 06, 2011, 04:44:01 AM »
Hi Captain,

Nice to see you back and thanks for sharing your update and writing this patiently though it took a lot of time. I am sure you will be fine. It's lesson for all of us that things can go wrong and how we can cope with the situations and make right choices at right time. Hugs!

H4L
Jan 2009 - Sero Negative
Jan 2010 - Sero Positive
               CD4 - 275, VL - 18,000
Oct 2010 - CD4 - 241, Started - Vonavir; Oct 2011 - CD4 - 474;Jan 2012 - CD4-620; Aug 2012-CD4-600, VL- UD; Jan 2013 CD4-493, VL-72 IU/ml   (Blip)

Offline anniebc

  • Member
  • Posts: 5,942
  • AM member since 2003
Re: CAPTAIN CARL UPDATE....
« Reply #4 on: July 06, 2011, 05:52:56 AM »
In my thoughts and heart as always, will be in touch when you get home to Norm and your babies.

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

Offline GSOgymrat

  • Member
  • Posts: 5,038
  • HIV+ since 1993. INTJ
Re: CAPTAIN CARL UPDATE....
« Reply #5 on: July 06, 2011, 06:48:43 AM »
You are such a fighter. I hope you continue to improve and that you are able to be comfortable at home. You are in my thoughts.

Ford

Offline wolfter

  • Member
  • Posts: 4,637
Re: CAPTAIN CARL UPDATE....
« Reply #6 on: July 06, 2011, 07:28:36 AM »
Am so pleased to hear the positive turn of events.  Continue to improve and know you're in our hearts.

Greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Online BT65

  • Global Moderator
  • Member
  • Posts: 9,975
Re: CAPTAIN CARL UPDATE....
« Reply #7 on: July 06, 2011, 07:40:46 AM »
Carl, I've said it a lot, and I"ll continue to-I love you (and Norm).  I'll be calling in a few days, and hopefully things will be more settled at the homestead.  I'm sure your kids are going to be overjoyed to see you.  I wish you nothing but peace, and as little pain as possible. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline bocker3

  • Member
  • Posts: 3,415
  • You gotta enjoy life......
Re: CAPTAIN CARL UPDATE....
« Reply #8 on: July 06, 2011, 07:46:23 AM »
You truly are an incredibly strong person.  Am sending positive thoughts your way.

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Buckmark

  • Member
  • Posts: 1,531
  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
Re: CAPTAIN CARL UPDATE....
« Reply #9 on: July 06, 2011, 09:22:14 AM »
I'm so happy to hear from you, Carl, and I'm amazed at how resilient and strong you are.

Hugs,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Online Jeff G

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  • Member
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  • How am I doing Beren ?
Re: CAPTAIN CARL UPDATE....
« Reply #10 on: July 06, 2011, 09:39:01 AM »
You are an inspiration Carl . BIG HUG .

Offline AlanBama

  • Member
  • Posts: 3,641
  • Alabama: the 'other' 3rd World Country!
Re: CAPTAIN CARL UPDATE....
« Reply #11 on: July 06, 2011, 10:34:48 AM »
So glad to read this post, Carl.   All that fluid retention sounds horrible, and I'm sure is very painful.

As always, keeping you in my thoughts and prayers....Keep posting when you feel up to it; some of us will treasure these posts in a very personal way.

Love & hugs,

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 sharkdiver

  • Member
  • Posts: 1,350
Re: CAPTAIN CARL UPDATE....
« Reply #12 on: July 06, 2011, 12:03:11 PM »
love you!

Sharkie

Offline bear60

  • Member
  • Posts: 4,104
Re: CAPTAIN CARL UPDATE....
« Reply #13 on: July 06, 2011, 12:33:39 PM »
Thanks for the update, Carl.  Big (((((HUGS)))))))
Poz Bear Type in Philadelphia

Online leatherman

  • Member
  • Posts: 6,272
  • Google and HIV meds are Your Friends
Re: CAPTAIN CARL UPDATE....
« Reply #14 on: July 06, 2011, 12:40:41 PM »
 :-* :-*
much love and big hugs to you and Norm.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline karry

  • Member
  • Posts: 271
Re: CAPTAIN CARL UPDATE....
« Reply #15 on: July 06, 2011, 05:25:23 PM »
Happy to hear from you Carl! Thanks for sharing with us despite the enormouse effort you must make to update us on your condition. You are so strong! Keep it up!
Best wishes and luts of hugs to you!
Karry
Take it a day at a time....and be positive about it too!

Offline Lou-ah-vull

  • Member
  • Posts: 950
Re: CAPTAIN CARL UPDATE....
« Reply #16 on: July 06, 2011, 05:37:52 PM »
Sending you encouragement!  It is so thoughtful of you to take precious time and effort to write us....no doubt your extraordinary experience will encourage others facing their own "ordeals."  Your friends here will continue to keep you in their thoughts and prayers and delight in any opportunity to hear from you.

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Offline drewm

  • Member
  • Posts: 1,158
Re: CAPTAIN CARL UPDATE....
« Reply #17 on: July 06, 2011, 06:02:12 PM »
(((((HUGS))))))

 and

KISSES!!!!!  :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-*
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Online Joe K

  • Global Moderator
  • Member
  • Posts: 3,780
  • 31 Years Poz
Re: CAPTAIN CARL UPDATE....
« Reply #18 on: July 06, 2011, 06:41:44 PM »
You never have to apologize for taking care of you and Norm. We want you to be selfish, so you will get better and come back when you are able.

Carl, you are one incredible human being. Thank you for making us a part of your life.

Offline OneTampa

  • Member
  • Posts: 2,273
  • "Butterflies are free."
Re: CAPTAIN CARL UPDATE....
« Reply #19 on: July 06, 2011, 08:30:27 PM »
Carl,

It is wonderful to get an update from you in your own hand.

I wish you the absolute best and continued improvement.

Take care!
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline emeraldize

  • Member
  • Posts: 3,353
Re: CAPTAIN CARL UPDATE....
« Reply #20 on: July 06, 2011, 11:26:27 PM »
One of the best parts of this post is the fact that you wrote it.

Offline CaptCarl

  • Member
  • Posts: 1,114
  • Located in the Palinsville subdivision, JesusLand
Re: CAPTAIN CARL UPDATE....
« Reply #21 on: July 07, 2011, 12:58:28 AM »
Thanks everyone. Getting ready for my last night here before heading home in the AM. Got everything ready to go, computer being the last thing. I figured I'd crank out a response since from here on out since they'll be short. When I did the main one, I started it as a document, typed a little, saved what I did, then kept chipping away at it. I wound up working in it for a few minutes here, a few minutes there, over the course of a few days. Made it a lot easier. Tine to turn in. Have a good night all...

CaptCarl
The only thing I can do straight is shoot..

Offline Ann

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  • Member
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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: CAPTAIN CARL UPDATE....
« Reply #22 on: July 07, 2011, 09:34:40 AM »
Dearest Carl, I hope everything goes well for you in your move back home. I bet the boys will be thrilled to have you home - and Norm too, of course. You're all in my thoughts every day.

Hugs and love,
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 aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: CAPTAIN CARL UPDATE....
« Reply #23 on: July 07, 2011, 10:14:13 AM »
Hey Carl,

Just letting you know you are in my thoughts and prayers and I am still sending you and Norm lots of energy for strength.

I will remember you at full moon.

HUGS,

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

Offline David_CA

  • Member
  • Posts: 3,246
  • Joined: March 2006
Re: CAPTAIN CARL UPDATE....
« Reply #24 on: July 07, 2011, 02:53:15 PM »
Thanks for taking the time for the update.  You are an amazing man and are still in our thoughts and prayers.

David
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 northernguy

  • Member
  • Posts: 1,347
Re: CAPTAIN CARL UPDATE....
« Reply #25 on: July 07, 2011, 04:41:29 PM »
Sending you a hug from Canada.
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 CaptCarl

  • Member
  • Posts: 1,114
  • Located in the Palinsville subdivision, JesusLand
Re: CAPTAIN CARL UPDATE....
« Reply #26 on: July 09, 2011, 10:10:30 PM »
Thanks for all the support everyone. The latest round is that I was cleared to come home the day defore yesterday. As intimidating as it's all been, it does feel good to be home and sleeping in my own bed/recliner. I am glad that I stood my ground about not having a hospital bed brought to the house, I would never use it, and it would be taking up a huge amount of room in the living room. Now I just have to make some sort of daily schedule to learn to stick to and work around, otherwise it would be really easy to sleep all day and night. The mobility problem I have is being exacerbated by the fact the Norm broke his foot the day before I came home. :(  We must present quite the sight to see out in public....

CaptCarl
The only thing I can do straight is shoot..

Offline drewm

  • Member
  • Posts: 1,158
Re: CAPTAIN CARL UPDATE....
« Reply #27 on: July 09, 2011, 11:39:09 PM »
Kiss Norm for me  ;) Glad you are home....

HUGS N KISSES ((((((((HUGS))))))))  :-* :-* :-* :-*
« Last Edit: July 09, 2011, 11:50:02 PM by drewm »
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Online Jeff G

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  • Member
  • Posts: 12,154
  • How am I doing Beren ?
Re: CAPTAIN CARL UPDATE....
« Reply #28 on: July 10, 2011, 01:21:09 AM »
Im happy to hear you are safe at home . Thinking of you everyday . BIG HUG .

Offline OneTampa

  • Member
  • Posts: 2,273
  • "Butterflies are free."
Re: CAPTAIN CARL UPDATE....
« Reply #29 on: July 10, 2011, 03:08:13 PM »
Carl,

Good to hear the latest from you.

Continue improvement and wishing Norm fast healing from his broken foot.

Take care.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline weasel

  • Member
  • Posts: 1,686
Re: CAPTAIN CARL UPDATE....
« Reply #30 on: July 11, 2011, 12:06:45 AM »


            :-*   I hope your doing better

                       weasel
" Live and let Live "

 


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