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Author Topic: Meds, here I come.  (Read 3458 times)

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Offline aupointillimite

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Meds, here I come.
« on: November 29, 2006, 03:39:36 PM »
CD4s went from 570 to 474 in three months, with a percentage drop from 38% to 31%.

Viral load went from 6,000 to 9,000.

My doc, who is the aggressive sort, has prescribed me Atripla.

I had been coasting at above 500 CD4s for two years, and then this drop out of nowhere.

This is the first time I've had such a crappy lab report.  I assume this is something I should get used to.  My doc said that it's the nature of HIV... weird stuff out of nowhere... I already knew that, but it's kind of hard to see it happen in me. 

Your tastebuds can't repel flavor of this magnitude!

Offline skeebo1969

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Re: Meds, here I come.
« Reply #1 on: November 29, 2006, 04:02:33 PM »


   Your numbers are not bad.  I had those same results during the good ole days ( 6 months ago) and my doctor gave me the option.   It was only after I did not go to the doc for 6 months and my numbers dipped below 200 that she got on my ass.  31% is really a great percentage.  Mine was never over 26% and is now at a low of 13.3%.

   I just started Atripla two weeks ago and now wish I had done so sooner!  I pop one pill and pray.   Your vl is 9,000?  Damn dude your immune system has been doing well without meds...  It's really not that bad of a lab result, don't get down about it.

   I am just curious did your doctor suggest going on meds or did he/she just say it was time?   When I was at cd4 of 482 and vl at 234,000 my doctor gave me the option to wait.  A month later my vl was 611 and vl was 104,000 and she still gave me the option.  That's when I made the mistake of not going back 3 months later as usual and waited the ill fated 6 months that saw my numbers do a drastic decline.

    In any event starting on the Atripla will definitely help your already strong immune system.

  Thomas
I despise the song Love is in the Air, you should too.

Offline ACinKC

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Re: Meds, here I come.
« Reply #2 on: November 29, 2006, 04:05:26 PM »
I'm no expert but the numbers do bounce around a bit sometimes.  I'd probably wait for another set of labs if it were me.  In 3 months time.
LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline aupointillimite

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Re: Meds, here I come.
« Reply #3 on: November 29, 2006, 04:11:16 PM »
She said that since I'm young, she would like me to start meds because my immune system will bounce back well, and I think she'd like to avoid letting it get too damaged before starting meds... but it the drop in the CD4 numbers and percentages that kind of alarmed her.

I know they're not bad... but they're bad for me... I was starting to feel a little cocky, to be honest... and this is sort of a smack in the face... and like I said, my doc is aggressive and doesn't like to let her patients get to 350 CD4s before getting meds... she was worried about another drop like that in the next few months.
Your tastebuds can't repel flavor of this magnitude!

Offline ACinKC

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Re: Meds, here I come.
« Reply #4 on: November 29, 2006, 04:18:31 PM »
Newt, jk, where are you guys..... im just an IDIOT when it comes to this stuff!!!
LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline skeebo1969

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Re: Meds, here I come.
« Reply #5 on: November 29, 2006, 04:20:44 PM »

   She knows whats best for YOU..  I know what you mean about cocky, hence my waiting the 6 months.   If your confortable with her stance then do it, she is definitely not wrong.   I just did the wait thing because the medicines are so toxic.   I would do another lab if it was me, but that's just me.   I think going on meds now would be a correct choice just as I think it would be right to wait also.   If she thinks it to be best then it is.  

   Thomas
I despise the song Love is in the Air, you should too.

Offline thunter34

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Re: Meds, here I come.
« Reply #6 on: November 29, 2006, 04:28:29 PM »
That's between you and your doctor, but those numbers still sound awfully good to me.  Personally, I would have just considered this to be the 'Yellow Light' range...proceed with caution.  Keep an eye out, but wait just a little bit longer.  The generally accepted 'normal' range for CD4's is 500-1500.  You are just barely below that and could bounce back up naturally for a time.  Your viral load doesn't sound disasterously high to me, either.  I was whistling zippity-doo-dah when I got back DOWN to that level after months on the meds.

I've got a very realistic reason for cautioning you about this.  Didn't you say that you are planning to relocate to another state soon?  How you already secured a way of getting meds for yourself at this new location?  If not, I would seriously discuss this factor with your doctor before you start taking the pills.  You are better off at the moment to remain "treatment naive" than you are to start taking a regimen for just a month or two and then stopping.

I agree with your doctor that you should be keeping a closer eye on this now, but I am wary of you starting so soon with these other issues on the horizon.  Heck, even another 100 drop would not put you into the range for the most perilous of the OI's.  Some people have a natural range that is below the 500 regardless of HIV.  Again, I am not a doctor and cannot substitute for their professional advice.  I just suggest you talk a bit more extensively before you start swallowing pills.  For most, they are no picnic- and once you begin taking them, you are generally expected to do so every day for the rest of your life.  If I had been afforded the chance, I would have held off as long as I could.
« Last Edit: November 29, 2006, 04:33:15 PM by thunter34 »
AIDS isn't for sissies.

Offline MSPspud

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Re: Meds, here I come.
« Reply #7 on: November 29, 2006, 04:57:10 PM »
I personally waited when I was in your range and until I was down to 355 and a vl of about 50K.  My number bounced back to normal within less than 12 months, to 800 and undetectable.  I was holding steady for a few years and then suddenly dropped before meds.  The thing you have to keep in mind is this it not your fault, it's just natural.  More so, starting meds in the 300's isn't so bad.  You're body can handle it and you may even find you have more energy.  I do feel better today on meds and knowing I'm giving my immune system a break.

Sorry for the jumbled paragraph but I think you get my point.  It's up to you ultimately.  Don't fear the meds but don't rush into them in you're not ready.

Offline gemini20

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Re: Meds, here I come.
« Reply #8 on: November 29, 2006, 06:00:12 PM »
I wonder if doctors in the US try and get patients onto treatment sooner than here in the UK. When I got my latest labs two weeks ago (CD4 at 245 and 15%; v/l 13,600) my doctor was happy for me to stay off meds and even said if a person came in off the streets with these numbers he wouldn't be advising them onto treatment straight away.

In my 15 years of living with HIV I only went onto meds for two relatively short periods of time (4 months; and then 18 months) and my counts when I started were 272 (20%) and 12,000 the first time around in 1999; and then 141 (14%) and 70,000 in 2004.

Having mapped all my blood results since diagnosis onto a spreadsheet I can see that there are definite patterns over the years. Numbers tend to plateau for 3-5 years and then take a drop down by maybe 100-150 t-cells and then plateau again. It's good for me to see this now as I can make any future treatment decisions based on what I know my bloods have done over all these years.

Everyone's thoughts on when to start will differ but for the record I definitely wouldn't be considering starting with your numbers. For me, the longer I can stay off the meds the better, thankfully my doctor understands where I'm coming from and supports my decision.
If you are not 100% convinced this is the right move for you then I would hold off the meds.

Best wishes,

Emma



Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline Longislander

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Re: Meds, here I come.
« Reply #9 on: November 29, 2006, 06:39:10 PM »
maybe you can get another set of labs done in 1 month instead of 3?
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 northernguy

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Re: Meds, here I come.
« Reply #10 on: November 29, 2006, 06:51:03 PM »
Those numbers do sound good to me.  Not far off mine and my doc indicated it might be a couple of years before meds.  As to being young, wouldn't some argue that its better to wait so you don't risk exhausting treatment options as you get older?
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 Boo Radley

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Re: Meds, here I come.
« Reply #11 on: November 29, 2006, 07:09:55 PM »
With those numbers I would wait for at least 3 months for another set of tests before going on meds.  Your CD4 count can vary by 100 or more at different times in a day.  A viral load increase from 6000 to 9000 is not a cause for great worry. 

These are the current CDC guidelines:  http://aidsinfo.nih.gov/ContentFiles/AdultandAdolescentGL.pdf

Panel’s Recommendations (Table 5):
• Antiretroviral therapy is recommended for all
patients with history of an AIDS-defining illness
or severe symptoms of HIV infection regardless
of CD4+ T cell count (AI).
• Antiretroviral therapy is also recommended for
asymptomatic patients with <200 CD4+ T
cells/mm3 (AI).
• Asymptomatic patients with CD4+ T cell counts
of 201–350 cells/mm3 should be offered
treatment (BII).
• For asymptomatic patients with CD4+ T cell of
>350 cells/mm3 and plasma HIV RNA >100,000
copies/mL most experienced clinicians defer
therapy but some clinicians may consider
initiating treatment (CII).
• Therapy should be deferred for patients with
CD4+ T cell counts of >350 cells /mm3 and
plasma HIV RNA <100,000 copies/mL (DII).


The CDC is a rather cautious body and only in the last few years did they revise the guidelines.  As you can see you are in the category considered as not needing HAART.

However, I believe you are the only one who can make the decision for yourself.  Regardless of what you decide, best of luck!

Boo
String up every aristocrat!
Out with the priests and let them live on their fat!





Everything I do, say, think, excrete, secrete, exude, ooze, or write © 2007 Sweet Old Boo, Inc.

Offline poet

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Re: Meds, here I come.
« Reply #12 on: November 29, 2006, 08:11:48 PM »
I think that Mr. Hunter has nailed this, if, in fact, you are thinking about moving.  Once you start on a set of medications, you want to keep on them so as not to allow hiv to work around them during a pause without them.  Of course I admit to being anal about this.  In my case I did wait until cd4's were between 250 and 300.  And since you recognise your doctor as being agressive, you are an aware patient.  Do you want to be as agressive or not?  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline Eldon

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Re: Meds, here I come.
« Reply #13 on: November 29, 2006, 08:16:42 PM »
Hey Aupointillimite,

Your numbers do look good. In fact, I agree with Win, I should have started sooner than wait for them to drop.


Make the BEST of each Day!
« Last Edit: November 29, 2006, 08:32:24 PM by Eldon »

Offline aupointillimite

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Re: Meds, here I come.
« Reply #14 on: November 29, 2006, 08:23:32 PM »
Personally, I'd prefer to be aggressive.  From what I've read, the immune system damage is cumulative... the worse off you let it get, the less likely it is to recover well even with being on meds.  At least, that's what I understand the SMART study indicated.

I'm planning the move the best I can vis-a-vis medication... and I suppose the only thing I can do is plan and hope that in my case, fortune favors the bold. 

Your tastebuds can't repel flavor of this magnitude!

Offline Jeffreyj

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Re: Meds, here I come.
« Reply #15 on: November 29, 2006, 11:22:09 PM »
At the end of the day, it only matters what YOU think is best for YOU. Go with your instincts, they are obviously good.

I fully support your decision. Good luck and you have allot of support here!

Positive since 1985

Offline Joe K

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Re: Meds, here I come.
« Reply #16 on: November 29, 2006, 11:45:54 PM »
I suggest that you wait for your next set of labs before you decide on doing anything.  Starting meds is not a step to be taken lightly and your numbers are very good and the change from the last labs does not really mean much, because you don't have a trend yet.  You really need to educate yourself on what being on meds really entails and the real risks you face by starting them before you really need them.  I am not telling you not to take meds, just encouraging you to understand all the ramifications before you take such a dramatic step.

No matter what your doc may say, you just do not start and stop HIV drugs, like you would aspirin.  I wish someone had told me to wait on some drugs, but we did not know any better.  Managing your health is not a spectator sport and you should be supporting a partnership with your doctor to manage your care.  So before you just decide to make a major jump like this, please look carefully before you leap. 

Offline Mike89406

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Re: Meds, here I come.
« Reply #17 on: November 30, 2006, 11:21:18 AM »
Personally, I'd prefer to be aggressive.  From what I've read, the immune system damage is cumulative... the worse off you let it get, the less likely it is to recover well even with being on meds.  At least, that's what I understand the SMART study indicated.

I'm planning the move the best I can vis-a-vis medication... and I suppose the only thing I can do is plan and hope that in my case, fortune favors the bold. 



Wish you the best of luck the only thing with me was my numbers were never over 480 so I dont know of my natural range might have been below 500 becuase you dont know these things until you're dignosed Poz. I had a very good and experianced ID doctor and she would recommend meds if you reached 50,000 VL CD4 hits, 350 or below, You're percentage  though says 31% thats a great percentage still. Most people dont start meds til they hit the teens in percentage. Luckily for me. My % was 24% when I started meds, and my VL like 40,000 so it wasn that my immune system was beyond repair. I know the AIDS criteria for percentage is 14% though.

But its all up to you and you're doctor. I can tell you that the earlier you start meds and the longer you're on them the more wear and tear on you're liver, and hopefully you dont drink, or you drink much becuase meds and alcohol are lke twice the wear and tear on you're liver when combined. This has been causing a increase in the amount of liver failures nowdays, and need for transplants. So if you;re takiung care of yourself then you should have nothing to worry about.

Offline blondbeauty

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Re: Meds, here I come.
« Reply #18 on: November 30, 2006, 12:18:30 PM »
I decided to start meds with 503 cd4 25%. My cd4 dropped from 689 to 503 and the viral load increased from 15.000 to 80.000 in ten months.
It wasn`t my doctor`s decision but he agreed immediately when I asked him to start. He also pointed out nothing would happen if I waited till my cd4 dropped to 350, but he respected my decision and prescribed me my meds with no delay and no questions.
Maybe I could have waited two more years to start...but do you think there would be a great difference in starting two years sooner or later? If my liver gets damaged two years earlier, or I ran out of options two years earlier...or I die because of toxic effects of meds two years earlier...Is that going to make a great difference? I want to be healthy NOW. Tomorrow I might be killed in a plane accident or by an Irani atomic bomb. Today is what matters to me and I want to keep my immune system healthy TODAY.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline sweetasmeli

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Re: Meds, here I come.
« Reply #19 on: November 30, 2006, 12:57:13 PM »
Also no expert but from my own experience so far and from what others have told me, your counts look good to me. What ever happened to not making a decision based on one set of results but on a series of results? Yes there has been a drop in your CD4s but they are still pretty good and your % is still good and your VL is nothing to cause concern. And this is only one set of results.  I vote for more labs over the next 3-6 months to see if there is a downward trend. Then you can make a more informed and balanced decision. But it's your body and your choice. If your doctor was my doctor, I would be the one getting aggressive with her...just saying!

Melia
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Offline thunter34

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Re: Meds, here I come.
« Reply #20 on: November 30, 2006, 01:11:10 PM »
I'm glad there are so many others joining the choir here.  I really and truly think you need to wait and get another set of labs done.  I wouldn't keep chiming in if I didn't feel it so strongly.  I know for a fact my doctor would never base this decision on one set of labs.  Not with numbers like you've still got.  You have your whole life to swallow pills.  There is no need to jump on that wagon until you absolutely have to.  But again...your decision, so I'll cut the advice and leave it in your hands now. 
AIDS isn't for sissies.

Offline woodshere

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Re: Meds, here I come.
« Reply #21 on: November 30, 2006, 01:48:54 PM »
I suppose I was lucky, when I tested poz this past spring, with a Cd4 count of 179, I had no choice or decision to make, it was already made for me. I wish I was in a position like so many of you, having to decide when to start meds or even dreading starting.  If that were the case I wouldn't be so far in the hole. Just another example that even though we are all HIV+, each person deals with different issues and problems.
Wish you the best,
Woods
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Ann

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Re: Meds, here I come.
« Reply #22 on: November 30, 2006, 02:54:29 PM »
I feel very strongly about this too. In fact, if my doctor were to recommend that I started meds with numbers like yours, I'd be looking for another doctor. I'd also be tempted to ask how much of a kick-back from the drug rep he was getting.

Your numbers are fantastic and I hope you wait for more results before you even consider starting now. There really is no need.

Ann
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Offline manchesteruk

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Re: Meds, here I come.
« Reply #23 on: November 30, 2006, 03:10:56 PM »
I definately agree with the advice on here wait until you see a trend you might find that your next labs bounce back i've seen variations in my CD4 count of 200 inbetween labs.  Thats my favourite office quote by the way!  have you got Ricky Gervais' other comedy Extras over there yet?
Diagnosed 11/05

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

Offline Mike89406

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Re: Meds, here I come.
« Reply #24 on: November 30, 2006, 04:25:13 PM »
Let me say this from my own personal experiance I dont like taking pills, however if the benefits outweigh the risks then Im all for it.

Just to clarify my situation my numbers as I said have always been between 380-480 for some of you that may cause a reaction like" OMG you need to start meds" Despite the absolute count my percentages ranged from 28-38% ans VL was averaged at 10,000. In the winter of 2003 my VL numbers spiked to 38,000 my T-cells like 350 partially due to colds and other bugs going around during that winter.

Me and my doctor discussed the realistic possibilty of taking meds and she even pulled out the med chart to show me what I would be taking "which at the time which was Combivir+Sustiva. By that time I was obviously stressed because this med thing at the time is a lifetime commitment. She then had some follow up labs drawn after talking to her (BTW i had like two follow up labs drawn before this visit).

When the labs came back my t-cells jumped back up, my VL shrank to 22,000 and eventually down to 8000. So you see the pattern. My own immune system had bounced back on its own. Now yes I could have taken meds just to be safe but my percentages were strong enough on its own where i wasn't worried something like 32%.

A lot of rigid doctors place emphasis on just CD4 numbers and thats not necessarily the case nowdays or from a lack of knowledge. Technology has shown the Percentage compared with the VL then the CD4 count together makes a more accurate assestment of you're immune system health.

Last winter I had a count of 360 VL 12000 28%, so i wasn't ready for meds just yet unless i wanted to.
I developed Testicle cancer last Decemeber and had a short radition treatment when my next labs came out following the radiation then I was shocked CD4 126, VL 38000, 24%. My radiation therepy lowered my numbers. However my percentage was still healthy al in all my doctor sounded confused she said my numbers didnt correlate becuase the average percentage with that CD4 count would have been 12-14% which 14% is another figure they go by to say you're health is like AIDS.

One month on meds jumped up to CD4 jumped from pre meds 126-176
24% to 31 , VL from 38000 to 131.  My point simply being that Its up to you if you're dead set on meds now but I knew someone that started meds way before they needed to and 3 yrs later said maybe they should have waited. I was at the line still healthy enough to avoid OI's, and hopefully look forward to great numbers on my next visit.

Some people dont start til they are like way below 100 CD4 cells, and single digit % CD4+CD3. Or PCP pneumonia  etc... You're lucky you're on top of it and was diagnosed early as was I. FOr some people 400-500 CD4 sounds like really high because they dont know what they're true average was before POZ just like the highest count I have seen was 488. Some people have lower natural numbers but slow progressers. the thing is I hardly ever get sick even while POZ (cold, flu etc..)

For you it has to be a comfortable choice to start meds, and you have to be confident about you're health. However some Docs do push pills before they should be started. make sure this is you're preference and not just you're docs. It still wouldn' hurt to have one or two follow up labs you're numbers are really high right now you can afford to wait and see if its a blip or short spike up before you do commit to the meds, but really no matter what as long as you weighed out everything whatever choice you make will be the right one.





Offline ndrew

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Re: Meds, here I come.
« Reply #25 on: November 30, 2006, 04:36:06 PM »
Hello there,

I want to echo what I was told here, "Don't be afraid of the meds."  I started Atripla in October and feel pretty damn good about it.  I also took my time and waited until I was ready to start.  I am prochoice.  My doctor was supportive, but learn about what is best for you and your body.

Kindest,
Drew

 


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