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Author Topic: Did(n't) make it six years  (Read 4260 times)

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Offline Iggy

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  • Posts: 2,435
Did(n't) make it six years
« on: June 15, 2008, 05:59:13 PM »
After a few postponements due to financial issues, tomorrow is the doctor's appointment where I expect to receive my first prescription for HIV meds (most likely Atripla as I have no known resistances according to my last genotype.)

Physically I feel fine, but since my last results in March ( http://forums.poz.com/index.php?topic=19748.0 ) were Cd4: 300; VL: 96,000; %: 13 - I don't kid myself that I have had a miraculous bounce back in numbers.

Jeromy made a good suggestion that I inquire with the doc to see if there are any current clinical trials that I may be eligible for as it would ease the cost issue with the meds and doc appointments being free for a while, so I may in fact not be starting meds tomorrow after all, but Charlotte seems not to be a high priority area in many of the listings that I looked up so I'm not certain we will luck out with that option.

Anyway, I was diagnosed in Sept of 2002 though confident my conversion was May, 2002 so I either made it six years or made it just short of six years of needing meds.

Offline RapidRod

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Re: Did(n't) make it six years
« Reply #1 on: June 15, 2008, 07:00:20 PM »
Iggy that sounds like a good idea as long as you live close to the clinic.

Offline redhotmuslbear

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Re: Did(n't) make it six years
« Reply #2 on: June 15, 2008, 07:15:01 PM »
Instead of looking at the turn to meds as a "failure," I hope that you find comfort in exploring clinical trials.

Yeah, it doesn't look like much is open in the Charlotte area for meds:
http://www.clinicaltrials.gov/ct2/results?term=hiv+charlotte&recr=Open

Still, it's worth nagging the study coordinators of what meds trials there are for treatment-naive folks.  Researchers LOVE getting their needles into untreated pozzies and doping them up with randomized pills.

Best,
David
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline GSOgymrat

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Re: Did(n't) make it six years
« Reply #3 on: June 15, 2008, 07:47:18 PM »
You may want to expand your clinical trial search to Wake-Forest in Winston-Salem, Duke and UNC-Chapel Hill. I live in Greensboro and participated in a trial at Duke before I was insured. It wasn't too bad because I only had to go once a month for bloodwork.

Offline Buckmark

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Re: Did(n't) make it six years
« Reply #4 on: June 15, 2008, 09:08:06 PM »
As David points out, I hope you're not viewing your need for meds as this as some kind of personal failure on your part.  HIV is a tough virus.  So look at meds at the next logical step, and something that has a high likelihood of being of great benefit to you.

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

Offline Longislander

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Re: Did(n't) make it six years
« Reply #5 on: June 15, 2008, 09:24:50 PM »
6 years ( or almost) is pretty good~ I only made it 2 1/2!

I hope you can find one of those trials, but if you can't, I hope you have as easy and successful time with Atipla as I have thus far.

All my best,
Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline Robert

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Re: Did(n't) make it six years
« Reply #6 on: June 16, 2008, 12:37:13 AM »
Hi Iggy.

I'm sorry you just might have to start the meds tomorrow if only because financially it sounds like it might be a stretch.  I like the idea of widening your search.  I hope it works out OK.

robert
..........

Offline thunter34

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  • His name is Carl.
Re: Did(n't) make it six years
« Reply #7 on: June 16, 2008, 08:33:57 AM »
Jeromy made a good suggestion that I inquire with the doc to see if there are any current clinical trials that I may be eligible for as it would ease the cost issue with the meds and doc appointments being free for a while, so I may in fact not be starting meds tomorrow after all, but Charlotte seems not to be a high priority area in many of the listings that I looked up so I'm not certain we will luck out with that option.


May have missed it, but not getting why you wouldn't just qualify for ADAP in the first place.
AIDS isn't for sissies.

Offline aztecan

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Re: Did(n't) make it six years
« Reply #8 on: June 16, 2008, 11:44:30 AM »
Hey Iggy,

You are on Jeromy's insurance as his partner, right? If I read the other thread correctly, your copays will be in the neighborhood of $80 a month.

Now hon, I don't want to put too fine a point on this, but with numbers like yours, I would make getting on those meds a priority.

Everything else will be for naught if your health goes down the crapper.

Are you enrolled in an ASO in Charlotte? Do they have insurance assistance? We have a program here that will pay your copays for you, providing you can find a pharmacy willing to work with the ASO.

Perhaps there is a similar program where you live?

The bottom line here isn't whether it is convenient to get your meds started now, but that your numbers indicate you should start now to prevent any further loss of vitality and immune system memory.

Hope something works out for you soon.

HUGS,

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

Offline Miss Philicia

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Re: Did(n't) make it six years
« Reply #9 on: June 16, 2008, 11:51:33 AM »
::agrees with Mark, as I generally do::
"Ive slept with enough men to know that Im not gay"

Offline pozzitive

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Re: Did(n't) make it six years
« Reply #10 on: June 16, 2008, 12:39:41 PM »
I waited 5 years and I have to say that I did feel like I had failed the day my doctor told me to start on meds.

Nonsense a month later I had a boost of energy that I can not describe to you, I was having a lot of skin issues and those are gone as well.

Every day whem I take my pills I think and pray that they will get into my body and do me good, corny but it helps.



POZ since 2000 \ Truvada and Viramune

"I can be changed by what happens to me. but I refuse to be reduced by it.

deuxlapin@gmail.com

Offline pozzitive

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Re: Did(n't) make it six years
« Reply #11 on: June 16, 2008, 12:40:50 PM »
The bottom line is at least we have meds to start...
POZ since 2000 \ Truvada and Viramune

"I can be changed by what happens to me. but I refuse to be reduced by it.

deuxlapin@gmail.com

Offline PeteNYNJ

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Re: Did(n't) make it six years
« Reply #12 on: June 16, 2008, 01:11:09 PM »
I can understand you feel bummed, but think of it as taking an active role in your health.  I am not on meds yet, but know that it is coming so I try not to put a negaitve spin on it.

Hope everything works out - you know it will :)

Pete

Offline Iggy

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Re: Did(n't) make it six years
« Reply #13 on: June 16, 2008, 03:01:05 PM »
Thank you all for your supportive comments.  I appreciate them very much.

I realized after reading some of the comments that I might have accidentally given the wrong impression that I am depressed about starting meds or even feeling challenged, and rereading my subject line and theme of "make it" I can understand where that came from.  I'm honestly pretty cool about the whole thing and have been aware for a while that this was coming and I feel pretty prepared as well as optimistic about my future.

Mark - I particularly appreciate your advice and I agree with what you are saying in principle.  the fact that I'm hardheaded (which is especially enabled by feeling generally well) leads me to take what you said to heart and see what my doc says following tonight's appointment.  To answer your question about the local ASO - frankly, they are having a lot of issues and it seems that the going conventional wisdom is that they are going to shut down.  Charlotte is in bad shape as far as HIV/AIDS services and even the local non service advocacy group has had their Director leave without a replacement.

Anyway, I trust myself, Jeromy and my doc right now, and if he thinks there is a chance of me getting into a trial quickly and that it is worth it, then I will go for it, of course if he just slaps me upside the head and yells at me for even waiting this long and now contemplating a further delay then I will take his advice there as well.

Thanks again all.



Offline Peter Staley

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Re: Did(n't) make it six years
« Reply #14 on: June 16, 2008, 04:27:11 PM »
Iggy -- your attitude is sounding great.  Fingers crossed that your new numbers will be better than the last (although those weren't that bad).  And good news that you can take Atripla.

Please read our lesson on Tips & Tricks on taking Sustiva so that you are fully prepared for starting that drug:
http://www.aidsmeds.com/articles/SustivaTips_7550.shtml

And thanks for the update!

Peter

Offline leatherman

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Re: Did(n't) make it six years
« Reply #15 on: June 16, 2008, 05:44:11 PM »
Charlotte is in bad shape as far as HIV/AIDS services and even the local non service advocacy group has had their Director leave without a replacement.
Thanks for that  ;) Now when my Mom tries to talk me into moving back to Charlotte, I'll have some more ammo about why it's easier to just stay here. LOL I've often thought (especially thru my recent difficult times) that moving back home and possibly getting screwed with obtaining my meds or health care wouldn't be the best thing to do. But you know how moms can be? LOL I've listened to her asking me to come home for nearly 20 yrs, I'm sure I can manage to stave her off a bit longer. LOL

I'm honestly pretty cool about the whole thing and have been aware for a while that this was coming and I feel pretty prepared as well as optimistic about my future.
Good to hear! But you've always seemed to me to be handling this reasonably.  ;D

So many people only find out in a hospital with an OI and immediately have to go on meds and hope they don't die. Knowing for so long has given you the time to become knowledgable enough to know just when to start the meds. It's just another step in the medical care you've already been giving yourself knowing you have this underlying disease. (I could mention the shingles you had not long ago; but saying that would probably make quite a few of us "itchy" just thinking about it. LOL)

And let me tell you from my personal experience (a couple of times) that starting meds when you're not already horribly ill or at death's door, it's a heckuva lot easier to put up with any side effects you might have.  ;) It's also a lot less scary to "wait for the meds to work" in bringing down a lower VL than when your VL is, say, in the 400,000 - 600,000 range.  :o

Good luck with the meds ... and the funding. ;)
mikie
leatherman (aka mIkIE)


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

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline madbrain

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Re: Did(n't) make it six years
« Reply #16 on: June 16, 2008, 07:27:26 PM »
6 years ( or almost) is pretty good~ I only made it 2 1/2!

I hope you can find one of those trials, but if you can't, I hope you have as easy and successful time with Atipla as I have thus far.

All my best,
Paul

Yep. And my bf was on meds 6 months after his poz test, and 10 months after his last neg test.
According to my doc HIV progresses to AIDS in 4 to 8 years on average. But most people who are aware of their status don't wait that long to start meds.

Offline northernguy

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Re: Did(n't) make it six years
« Reply #17 on: June 16, 2008, 09:38:56 PM »
Hi Iggy,

Glad to hear you're in the right head space to start meds.  I guess we all know (most of us anyway) that its going to be part of the journey.

When I hear about your insurance concerns, it makes me realize how fortunate I am to somewhere that covers the cost of meds, with no strings.  Takes away a lot of worry it seems.
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 Iggy

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Re: Did(n't) make it six years
« Reply #18 on: June 17, 2008, 08:45:20 AM »
Good news all around yesterday!

Seems I am probably eligible for 1-2 clinical trials.  We took my blood for a last look at numbers but barring some unforeseen and incredible rise in cd4's and drop in VL, I should be able to join a Viramune trial where I would have all meds and doc appointments covered.  They are making my blood work a priority so I should know by early next week whether I'm in the study. 

I do want to thank those of you for your warm feedback and guidance (Mark and Peter in particular) and I know that this is a piece of cake compared to what other' face, but that rationalization doesn't seem to mean squat when you are the one going through it at the moment and -for lack of a better word - freaking out a little in worrying of how to pay for doctor appointments and meds even when you have health insurance.

Finally in the terrific news category - Jeromy got some of his liver and HPC tests back and the VL is extremely low and there is no shown damage thus far with his liver!  It really is nice to have a double whammy of good news for once.  I'm a happy camper today!  ;D

Offline Peter Staley

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Re: Did(n't) make it six years
« Reply #19 on: June 17, 2008, 09:18:44 AM »
That's great all around.  Give my best to Jeromy.

Peter

Offline Longislander

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Re: Did(n't) make it six years
« Reply #20 on: June 17, 2008, 05:05:17 PM »
AWESOME! ;D
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline YaKaMein

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Re: Did(n't) make it six years
« Reply #21 on: June 17, 2008, 10:21:06 PM »
Me Likes good news ... anybody's. Glad to hear it, Iggy
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline AlanBama

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Re: Did(n't) make it six years
« Reply #22 on: June 17, 2008, 10:39:08 PM »
Ig, that's great news honey.   I'm keeping my fingers crossed that you will definitely be able to be included in the Viramune study (I take Viramune and Truvada).   I think probably of all the HIV meds I have taken, Viramune has probably had the 'least' side effects, so that's a good thing in my book.

Hugs to both of you,

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 RapidRod

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Re: Did(n't) make it six years
« Reply #23 on: June 18, 2008, 06:04:27 AM »
Iggy glad to see you got some trials to pick from. Good luck to you bud.

Offline minismom

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Re: Did(n't) make it six years
« Reply #24 on: June 18, 2008, 07:19:52 AM »
Such good news for both of you and a much deserved break.  Here's to the good streak continuing.

Mum
www.watoto.com
www.MotherBearProject.org
"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 Iggy

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Re: Did(n't) make it six years
« Reply #25 on: June 18, 2008, 02:33:50 PM »
Thank you again for the follow-up statements of support.

Once my med cost issue was covered, I was besides myself with happiness over Jeromy's news.  I'm hoping this feeling of being very fortunate lasts as long as feelings of feeling like we were under.

I'm certain it will if I look for what is good in all.

Thanks again.

Offline Robert

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Re: Did(n't) make it six years
« Reply #26 on: June 18, 2008, 07:14:18 PM »
this is good news iggy.  Like you say, all around.  You start meds.   On a trail which covers all expenses. Activism at its best...you get an "all-expense paid" coverage and we (future benefactors) get to reap the benefits. 

And for icing on the cake....jeromy comes up clean.

robert
..........

Offline pozguy75

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Re: Did(n't) make it six years
« Reply #27 on: June 18, 2008, 08:14:39 PM »
I tell you, this was terrific news indeed. Iggy qualifies for the study, and I couldn't be more supportive. This is a big scary step for Iggy, or for anyone who is starting meds for the first time.

I will be with him every step of the way, cause I can remember what it was like to start my meds in the beginning, and support is exactly what he needs right now. Not just from me, but from the people that love him.

Thank you all!!
Dx 2005
ATRIPLA

Offline pozattitude

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Re: Did(n't) make it six years
« Reply #28 on: June 19, 2008, 12:22:58 PM »
Great news indeed,

Glad it all worked out.  For future reference in case you need it...look at Duke University....They are in Durham I know, but they have a very good HIV program with lots of research and assistance.  I used to go to the Duke HIV Clinic when I lived in NC.

Stay strong and healthy...both you and Jeromy...you guys are looking great!  :-*

Rich

POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline Iggy

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Re: Did(n't) make it six years
« Reply #29 on: June 19, 2008, 03:57:04 PM »
Well, i just got my last bloodwork results over the phone and I suppose the great news is that I am a shoe in for the clinical trials:

Cd4's 293
VL 116700
% 11

Again, the good news is that at least I qualify for the trials so it's all good.

Offline fearless

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Re: Did(n't) make it six years
« Reply #30 on: June 19, 2008, 09:56:28 PM »
Hye Iggy,
This is great news.
Having just come off a 2 year trial I can tell you that I really notice the extra expense of meds and docs appointments now. I've had to readjust for the additional cost.
Good luck with the trial.
Be forgiving, be grateful, be optimistic

Offline Peter Staley

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Re: Did(n't) make it six years
« Reply #31 on: June 20, 2008, 10:10:18 AM »
Thanks for the update, Iggy.  When do you start in the trial?

Offline Iggy

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Re: Did(n't) make it six years
« Reply #32 on: June 20, 2008, 11:02:19 AM »
Hey Iggy,
This is great news.
Having just come off a 2 year trial I can tell you that I really notice the extra expense of meds and docs appointments now. I've had to readjust for the additional cost.
Good luck with the trial.

Thanks for good wishes, and Yes, the aid in covering costs is the predominate immediate benefit that I am most grateful for.  I am glad to be a part of the trial for just helping the study (this or any) and I am also glad that I can avoid sustiva issues which I have been dreading...but I would be lying if I didn't acknowledge how relieved I am (will be) when I start and for the next 2-3 years can be free of financial worries as far as med/doc costs. 

Thanks for the update, Iggy.  When do you start in the trial?

The nurse in my doctor's office told me to expect a call early next week from the research assistant for the trials which I assume will be some sort of interview first.  Based on my conversation with my doc on Monday, I expect that if all goes well that it will take 1-2 weeks before I start.

 


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