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Main Forums => Living With HIV => Topic started by: Miss Philicia on January 18, 2012, 04:05:29 pm

Title: woop there it is!
Post by: Miss Philicia on January 18, 2012, 04:05:29 pm
Friends, (and not so friends), Miss P has achieved the apex of her illustrious expedition in the marvelous world of AIDS. I've now achieved, after 19 years of popping pills including those nefarious pre-HAART nasties, the highest numbers of my life:

Absolute cd4 count: 1712
cd4%:  53.5%
and, of course, VL <20

And mind you, this was during a period of major foot surgery including +40 incisions, 2 bought of infection from same, less than peachy recuperation still ongoing. And that's all layered on a diagnosis of severe sleep apnea I've probably had for 5-10 years of various degrees.

fyi for the new members on the board, 18 years ago I had 160 cd4 count and a 14% number, and my viral load has only been surpressed now for 5.5  years.

As recently as July 2005 my cd4 count average ~500 / 33% and a vl of ~40,000

That said numbers are not by far the only guarantee to an acceptable life as a pozzie -- as I stated I have longstanding, untreated, severe sleep apnea and will have a septoplasty & turbinectomy surgery in four weeks (blech), and am still not recovered from my 1st of 2 foot surgeries which I had 3 months ago. And with the nasal surgery my 2nd foot surgery may not happen until June, so by the end of they day that will be three different surgeries in about a year's time. (none of those issue have anything to do with HIV)

But whatever, I'll take the good news when it comes :)
Title: Re: woop there it is!
Post by: jb1973 on January 18, 2012, 04:14:50 pm
Why is the sleep apnea untreated? Did you try the CPAP?
Title: Re: woop there it is!
Post by: thunter34 on January 18, 2012, 04:45:58 pm
Wow.  Those are some impressive numbers.  You're about 4x as high as I am.  Congrats!
Title: Re: woop there it is!
Post by: buginme2 on January 18, 2012, 04:54:42 pm
Wow


Thanks for posting!  Thats great to see!  I'm sure that will provide some needed reassurance to others.

Curious.  Whats your cd4/cd8 ratio?
Title: Re: woop there it is!
Post by: Miss Philicia on January 18, 2012, 04:58:30 pm
Why is the sleep apnea untreated? Did you try the CPAP?

When I last had it tested it was a the low end (mild) and private insurance required moderate to severe to cough up the money for a CPAP, so I had to wait until it got worse. Of course, this does't make much sense now does it, and endangers the life of the patient but whatevs. So by the time I was re-tested it had mushroomed to "severe"... so much for our grand non-socialized medicine.

Anway, I'm not an obese person so that's not the cause of the breathing obstruction, so my pulmonary and ENT specialists are going to go the route of the nasal surgery the utilization of a sleep apnea oral appliance: http://www.aadsm.org/oralappliances.aspx
Title: Re: woop there it is!
Post by: Miss Philicia on January 18, 2012, 05:00:39 pm
Whats your cd4/cd8 ratio?

1.35

Now tell me what I should care... never caught on to this marker as being of much importance.
Title: Re: woop there it is!
Post by: buginme2 on January 18, 2012, 05:13:02 pm
1.35

Now tell me what I should care... never caught on to this marker as being of much importance.


The overall significance? I don't think thats been determined.   I was just curious.  Mine hasnt gone above .9
My doctor explained early on when I was first diagnosed how a low number <.9 could be an indicator of inflamation and the immune system over reacting.  Even though my cd4 count and percentage have improved my ratio hasnt improved much.  Was curious to see if yours had improved with your numbers.

Again, your numbers are reassuring.
Title: Re: woop there it is!
Post by: wolfter on January 18, 2012, 05:23:47 pm
Awesome numbers....congrats.   I had a septoplasty & turbinectomy surgery this past Spring.  I wish I would have done it years ago but was too fearful because of the horrible pain I experienced from a rhinoplasty about 15 years ago.  The techniques must be much better now because it was little more that discomfort.  I was up and about quickly.

best of luck with it.
Wolfie
Title: Re: woop there it is!
Post by: Miss Philicia on January 18, 2012, 05:25:51 pm
It's been over 1.0, or more like 1.15 or 1.2 ever since I switch from fuzeon and then isentress, steadily.

And as far as my absolute cd4s they've been +1,000 since December 2007 (even longer if you average the results from March '07-9/07 (i.e. 973, 1425 and 972) so close to five years, and that same period the % went always up from 38.5% to the current 53.5%, with most being in the upper 40's.

For context this was all when I switched from Fuzeon to Isentress, though without Isentress I'd not have that firm foundation to build on. Pre-fuzeon numbers were an astouding one-third what they are now. And then, of course, before Fuzeon they were in the doldrums more or less and for a decade.
Title: Re: woop there it is!
Post by: skeebo1969 on January 18, 2012, 05:27:13 pm

   I'm playing five dollars on 1712 tonight, boxed and straight!   
Title: Re: woop there it is!
Post by: weasel on January 18, 2012, 05:52:47 pm


 Nice numbers  :)

                               Love Weasel  :-*
Title: Re: woop there it is!
Post by: newt on January 18, 2012, 06:06:54 pm
Good.

- matt
Title: Re: woop there it is!
Post by: Rev. Moon on January 18, 2012, 06:37:48 pm
Phenomenal.
Title: Re: woop there it is!
Post by: eric48 on January 18, 2012, 06:57:37 pm
Congrats!

you could start a CD (4) sales business...


eric
Title: Re: woop there it is!
Post by: WillyWump on January 18, 2012, 07:01:10 pm
Very impressive. Congrats! I can't say I've ever seen a higher CD4 or percentage. Clearly you are doing something right. Maybe it's the Klonies, Kools, and liquor.


septoplasty

Cocaine.

Title: Re: woop there it is!
Post by: Jeff G on January 18, 2012, 07:31:10 pm
Congratulations on the impressive numbers ! 
Title: Re: woop there it is!
Post by: denb45 on January 18, 2012, 07:51:17 pm
I told ya , and you know it was true, your an AIDS prodigy........congrats, great numbers, keep up the good work  ;)
Title: Re: woop there it is!
Post by: bocker3 on January 18, 2012, 10:17:15 pm
Great numbers -- must be all that fancy eating..... 
Title: Re: woop there it is!
Post by: spacebarsux on January 19, 2012, 02:26:24 am
Awesome labs. Many Congrats!  :)
Title: Re: woop there it is!
Post by: emeraldize on January 19, 2012, 07:52:10 am
Congrats. Good luck with your pending surgeries.
Title: Re: woop there it is!
Post by: jb1973 on January 19, 2012, 08:19:24 am
When I last had it tested it was a the low end (mild) and private insurance required moderate to severe to cough up the money for a CPAP, so I had to wait until it got worse. Of course, this does't make much sense now does it, and endangers the life of the patient but whatevs. So by the time I was re-tested it had mushroomed to "severe"... so much for our grand non-socialized medicine.

Anway, I'm not an obese person so that's not the cause of the breathing obstruction, so my pulmonary and ENT specialists are going to go the route of the nasal surgery the utilization of a sleep apnea oral appliance: http://www.aadsm.org/oralappliances.aspx

That's odd that your insurance would not cover the CPAP.  Most insurances follow medicare guidelines and most cover mild OSA if there are additional documented symptoms of excessive daytime sleepiness, impaired cognition, mood disorders or insomnia, or documented hypertension, ischemic heart disease or history of stroke.  Unless, when they said you were at the "low" end of mild osa, you were below the apnea/hypopnea index of 5.  Definition of mild sleep apnea is an apnea/hypopnea index (# of apnea/hypopnes divided by the hours of sleep) of 5-15.  Any idea what yours may have been?

Did your doctors even consider trying the CPAP now or did they just opt for the surgery and then oral appliance?  We always try the CPAP first and then move on to other treatment options if the patient cannot tolerate the CPAP.  Some patients due choose the surgical route, but, we always make it clear that surgery is more of a 50\50 fix, works for some and doesnt work for others.  I've seen patients who have opted for surgery, and, there was no change in the severity of their OSA.

Also, just because someone is obese/overweight, does not automatically mean that they will have OSA.  Since it is an upper airway obstruction, anyone, overweight or not, can have it. 

I guess different hospitals/doctors/clinics will have different views on this, and, I'm sure the physicians involved have made no gurantees that your surgery will "fix" the OSA.

Anyway, I hope 18 years into this my numbers look as great as yours!  Good luck with the surgeries and all!!

Title: Re: woop there it is!
Post by: Ann on January 19, 2012, 08:56:20 am

 Clearly you are doing something right. Maybe it's the Klonies, Kools, and liquor.


Or all that posh nosh he consumes.

Nice numbers Missy. Colour me green with jealousy. (http://i933.photobucket.com/albums/ad174/dash1293_2010/Emoticons/sm_dead.gif)
Title: Re: woop there it is!
Post by: hope_for_a_cure on January 19, 2012, 08:56:37 am

Absolute cd4 count: 1712
cd4%:  53.5%
and, of course, VL <20


There should be an award for that.  Awesome numbers 'Miss P'.  Congrats !!
Title: Re: woop there it is!
Post by: Miss Philicia on January 19, 2012, 11:08:35 am
Any idea what yours may have been?

No, that was 12 years ago.
Title: Re: woop there it is!
Post by: Theyer on January 19, 2012, 02:22:40 pm


Nice numbers Missy. Colour me green with jealousy. (http://i933.photobucket.com/albums/ad174/dash1293_2010/Emoticons/sm_dead.gif)

At last, though off course  Feeling nothing but delight for you Miss P on a personal level I WANT THEM. Though at this rate you,ll be doing transplants , So I guess its great numbers !!
mhtv
Title: Re: woop there it is!
Post by: Joe K on January 19, 2012, 03:27:05 pm
Apparently, lacking all morals does have an upside.  Congrats!  8)

Joe
Title: Re: woop there it is!
Post by: eric48 on January 19, 2012, 03:54:51 pm
BTW,

as you have had surgery, have you been prescribed pain killers, analgesics or similar common drugs that, **might** have helped reduce the inflammation and boost that percentage

Your high CD4 count striked me the last time you reported it. Again this time it is remarkably (if not abnormally) high? Any idea, why would that be?

sounds like CD4 is proportional to the number of posts...

Cheers! Eric
Title: Re: woop there it is!
Post by: Miss Philicia on January 20, 2012, 09:45:48 am
Phenomenal.

It's the Westwood.
Title: Re: woop there it is!
Post by: Miss Philicia on January 20, 2012, 09:49:11 am
BTW,

as you have had surgery, have you been prescribed pain killers, analgesics or similar common drugs that, **might** have helped reduce the inflammation and boost that percentage

Your high CD4 count striked me the last time you reported it. Again this time it is remarkably (if not abnormally) high? Any idea, why would that be?

sounds like CD4 is proportional to the number of posts...

Cheers! Eric

No, just very steady progress since switching to Isentress in late 2007 -- bottom line is that HAART works over the long term. I should also add that unlike the rest of you I have one extra HIV med added to the standard HAART combo due to resistance issues, so maybe I get extra mileage out of that (?)

ps: sorry I lost that set of labs in December, 2009

1/9/12      <20      1712      53.5%
9/28/11     20      1557      51.9%   
7/5/11      <20      1528      49.3%
3/9/11      <20      1705      48.7%
11/5/10   <20      1264      48.6%
7/21/10   <48      1324      50.0%
4/21/10   <48      1380      45.0%
12/01/09
6/30/09   <48      1211      47.0%
3/17/09   102      1135      47.0%
11/11/08   <50      1140      45.6%
7/22/08    <50      1294      46.2%
4/20/08   <50      1320      44.0%
12/20/07   <50      1131      39.0%
(change to Isentress/TMC-114/Norvir/Truvada)
Title: Re: woop there it is!
Post by: denb45 on January 20, 2012, 10:42:10 am
No, just very steady progress since switching to Isentress in late 2007 -- bottom line is that HAART works over the long term. I should also add that unlike the rest of you I have one extra HIV med added to the standard HAART combo due to resistance issues, so maybe I get extra mileage out of that (?)

ps: sorry I lost that set of labs in December, 2009

1/9/12      <20      1712      53.5%
9/28/11     20      1557      51.9%   
7/5/11      <20      1528      49.3%
3/9/11      <20      1705      48.7%
11/5/10   <20      1264      48.6%
7/21/10   <48      1324      50.0%
4/21/10   <48      1380      45.0%
12/01/09
6/30/09   <48      1211      47.0%
3/17/09   102      1135      47.0%
11/11/08   <50      1140      45.6%
7/22/08    <50      1294      46.2%
4/20/08   <50      1320      44.0%
12/20/07   <50      1131      39.0%
(change to Isentress/TMC-114/Norvir/Truvada)

SO does this mean you really don't have teh AIDS anymore  :D most doctors don't start MEDS until you fall below 500 CD4s, but in your case, i guess that wouldn't apply right?  what I'm saying is, you could go off MEDS, but then you would probably be sick all over again..........does this make any scene, if not forgive me
maybe I'm just not in-the-know  :o
Title: Re: woop there it is!
Post by: Miss Philicia on January 20, 2012, 11:14:17 am
SO does this mean you really don't have teh AIDS anymore  :D most doctors don't start MEDS until you fall below 500 CD4s, but in your case, i guess that wouldn't apply right?  what I'm saying is, you could go off MEDS, but then you would probably be sick all over again..........does this make any scene, if not forgive me
maybe I'm just not in-the-know  :o

I doubt that would be a great idea since in 1992 I had 160 t-cells with 14%... doncha think? And when I caught swine flu 3 years ago I dropped down to 600 cd4s. It's all "fake" numbers courtesy of chemicals.

My body is still better than yours though so that's all that matters. Plus I'm going to die from sleep apnea within 3 weeks, not that you'd give a shit. It would give you a lot of laughs on facebook though amirite.
Title: Re: woop there it is!
Post by: denb45 on January 20, 2012, 12:27:30 pm
I doubt that would be a great idea since in 1992 I had 160 t-cells with 14%... doncha think? And when I caught swine flu 3 years ago I dropped down to 600 cd4s. It's all "fake" numbers courtesy of chemicals.

My body is still better than yours though so that's all that matters. Plus I'm going to die from sleep apnea within 3 weeks, not that you'd give a shit. It would give you a lot of laughs on facebook though amirite.

You will probably out live most of us in these forums, the reason why I was asking this, is were almost on the same med regiment, so I thought I'd ask, wasn't trying to be rude, just wanted some facts, that all  ;)
of course I give a shit, and no-body is laughing @ you on feacbook or anywhere else , don't know where you come up with all of that mess  :-*
Title: Re: woop there it is!
Post by: Growler on January 20, 2012, 02:53:30 pm
Congrats! Your gorgeousness, this  calls for a celebration.
Everyone, drinks are on Miss P!!!!!!

GROWLER (Make mine an Old Fashion)

Title: Re: woop there it is!
Post by: LM on January 20, 2012, 06:16:56 pm
Apparently, lacking all morals does have an upside.  Congrats!  8)

Joe

LOL!

But seriously, congrats Miss P, when I grow up, I want to have numbers just like yours.
Title: Re: woop there it is!
Post by: BT65 on January 21, 2012, 04:48:57 am
Congrats, dear. :-*
Title: Re: woop there it is!
Post by: Assurbanipal on January 21, 2012, 04:15:00 pm
Congratulations, Miss P

Title: Re: woop there it is!
Post by: GSOgymrat on January 22, 2012, 02:19:50 pm
Wow! Terrific numbers. Congrats!
Title: Re: woop there it is!
Post by: brenner on January 23, 2012, 02:43:41 am
Jealous, but in a good way.
Title: Re: woop there it is!
Post by: TonyDewitt on February 01, 2012, 09:14:51 pm
Is it too late to say that you are a rock star of this virus? Your numbers are amazing! Also nice that you gave credit to Isentress and your regimen. You really have something to be proud of - best wishes that you continue your astronomically good numbers, and that more people move in that direction.
Title: Re: woop there it is!
Post by: TonyDewitt on February 01, 2012, 09:19:12 pm
PS: I do recall reading that Isentress not only interferes with HIV replication, but also replication of CMV, EBV, and other viruses in the herpes family.
Title: Re: woop there it is!
Post by: Since2005 on February 01, 2012, 09:24:09 pm
Hi,

Very good to hear! Hope this good health continues for you forever!

Best

Since
Title: Re: woop there it is!
Post by: Incognito12 on February 10, 2012, 06:19:26 pm
Your numbers give a lot of people hope.
celebrate.
tb
Title: Re: woop there it is!
Post by: northernguy on February 10, 2012, 07:53:46 pm
Amazing cd4 count, congrats.

Let us know the sleep apnea treatment goes.  Mine's basically killing me slowly since I couldn't use CPAP and have been to indecisive to decide which way to go now.
Title: Re: woop there it is!
Post by: Rev. Moon on February 10, 2012, 08:09:19 pm
Her excellent numbers have a lot to do with consuming a consistent diet of expensive pastries, fine cheeses, imported beer, Greek yogurt, and British poppers. 
Title: Re: woop there it is!
Post by: anniebc on February 10, 2012, 08:41:12 pm
Your numbers have been upgraded from Wonderful to Awesome...congratulations Miss P.

The Oral appliance sounds a lot better than having to wear a CPAP..will be interesting to see how that works out.

Stay well

Aroha
Jan :-*
Title: Re: woop there it is!
Post by: DanMo on February 11, 2012, 12:43:01 pm
Beautiful numbers Miss P!
Title: Re: woop there it is!
Post by: Rhaegar on February 14, 2012, 12:27:30 am
That's fantastic news!
Title: Re: woop there it is!
Post by: aztecan on February 14, 2012, 07:42:32 am
I apparently missed this when first posted.

Philly, sweetie, those are some fine numbers.

Don't envy your upcoming surgeries, but if the result is good, they will be worth it.

Sleep apnea, eh? I can see you in a "Hannibal Lecter" mask.

HUGS,

Mark
Title: Re: woop there it is!
Post by: Miss Philicia on February 16, 2012, 02:59:04 pm

Sleep apnea, eh? I can see you in a "Hannibal Lecter" mask.
Mark


Do you have it?
Title: Re: woop there it is!
Post by: aztecan on February 17, 2012, 10:26:56 am
Do you have it?

No, a good friend does. He swears by it. I know others who have one but don't use it, saying they hate the way it feels.

Are they thinking of getting one for you?

HUGS,

Mark
Title: Re: woop there it is!
Post by: Miss Philicia on February 17, 2012, 07:31:37 pm
No, a good friend does. He swears by it. I know others who have one but don't use it, saying they hate the way it feels.

Are they thinking of getting one for you?

HUGS,

Mark


Right now I'm having a septoplasty/turbinectomy done in 12 days. Because I'm not a fat heifer my pulmonary specialist thinks that may open my obstructive issues up enough, and if not then we'll also add a night time dental device that pulls the lower jaw forward to open the throat. He's trying to avoid going the CPAP route.

So you've had a sleep study and everything and know that you don't have apnea, or is this just one of those things that you're cleverly asserting :)