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Main Forums => I Just Tested Poz => Topic started by: justaguy on April 13, 2009, 10:05:12 pm

Title: First ID Specialist Appointment
Post by: justaguy on April 13, 2009, 10:05:12 pm
I have my first appointment with an ID Specialist on Wednesday.  I have estimated my infection to have happened in March 2008, but my current CD4 count is only 136, so I'm either WAY wrong on that (doubtful) or I have an aggressive strain.  I'm currently on Bactrim.  My assumption is that I will be started on meds almost immediately.  They told me to block out several hours for the appointment.  They want to "get me in the system".  Luckily, I have amazing health insurance, a great primary care doctor who is concerned for me as a patient and as a friend, and I've already seen a therapist to help deal with the mental concerns.  But they are still wanting to set me up with a case worker and a counselor (don't really know if i need all that) in their own office.  Then after all that, I will finally meet the doctor.  They will also be taking additional blood samples.  I'm taking a medically knowledgeable friend with me, but I'm still nervous about what I might learn, and considering my current CD4 level, I am ready to get on the road to "recovery".  Anyone else been in this position, starting out so low?  Will they likely write a prescription that day, or will it be another few weeks before starting the antiretrovirals?  How long is typical turn around on getting CD4 and viral load counts?  My primary care doctor got my CD4 about 4 days later.  Is there a faster way?  I know they say not to start based on one count, but I'm honestly pretty scared right now.   If I were to start meds soon, should I plan on skipping a few days of work in case of side effects?  Curious to hear the experiences of others.  I thought I felt pretty in control, but the closer I get to the appointment, the more concerned I get about getting things under control ASAP.

Title: Re: First ID Specialist Appointment
Post by: BlueMoon on April 14, 2009, 06:46:51 am
I met the specialist after my first lab test, due to lousy numbers.  He put me on Bactrim, did an exam and asked questions, and did another lab test, with genotype.  At our second meeting, new results in hand, he prescribed a regimen.  I could have begun it immediately, but was requesting ADAP assistance due to the high cost, so it was six more weeks before I took the first pill.  It would have taken even longer had I not already been enrolled with a case manager.

Go ahead and get set up with that case worker.  You don't have to actually use any services at this time, but if the need arises it helps to already be assigned. 

Four days is pretty good turnaround for CD4 and viral load results.  Genotype testing, which determines any resistance you might have to meds, can take a couple of weeks.  I started treatment at the beginning of the weekend, in case of complications (there were none).

Good luck.  It may not seem like it, but things are happening.
Title: Re: First ID Specialist Appointment
Post by: Elephant on April 14, 2009, 04:11:37 pm
    I think you need the  CD4 counts, CD4%, the viral load and the Genotype testing before they can give you a particular med. They won't know dose and resistance I don't think otherwise.
     Typical turn around for the CD4 results is fast but the VL and Geno are like 2 weeks usually. At least that is what I've heard from several people.

:)
Title: Re: First ID Specialist Appointment
Post by: Miss Philicia on April 14, 2009, 05:35:35 pm
My lab results get turned around within 2 days, and it's been the same whether done by Lab Corps or Qwest, and this includes VL.  I go to what is probably the largest HIV clinic in Philadelphia so maybe that helps. 

Genotype tests always take longer, but I forget how long as it's been 4 years since I had one done.

Theoretically the doctor could write out paper scripts for your HIV meds at your appointment and you could go directly to a pharmacy and have them filled within an hour, assuming it's a pharmacy with a significant HIV clientele and, thus, has all of this stuff in stock.  Even if you didn't have insurance coverage at least in my state they could put through an emergency ADAP application immediately for a one month supply, and by the next month have the patient set up permanently.

Try not to be freaked out -- this may all seem quite alien to you but treatment is fairly standardized now days.  Unless you have a clear cut record of HIV testing throughout 2007 I'd really not speculate so much on your infection date, certainly not in how to approach starting treatment if you really have 136 cd4s.  That's not something to play around with frankly, regardless of how healthy you actually feel.  And no, a patient is not required to have a genotype test done before being prescribed medication, though they should take the opportunity to do it while you have an elevated viral load because once it's below something like 500 copies (can't remember if that's the right cut off number) they can't do one.
Title: Re: First ID Specialist Appointment
Post by: justaguy on April 15, 2009, 06:19:11 pm
Longest doctor's appointment of my life!   ;D

1:30 - meet with caseworker.  She gets me in the system, we talk about my insurance, my needs, my comfort and knowledge level, what was likely to happen based on my counts, informed me of all my rights to refuse treatment, how future appointments would work, etc.  Very nice.  Took about an hour.  Then went to meet the doctor around 2:45, who basically repeated a lot of what I've read on here - explained what the CD4 count meant, the viral load, etc.  My VL = 150,000 (I didn't have that information before) and my CD4 = 136.  He says he would like to do the genotype testing and says he recommends I start medication soon, even without the genotype testing - he wants me to start with Atripla - and gave me a prescription.  I'm going to go ahead and fill it, my local pharmacy has it in stock.  I probably won't start it until Friday night so I can see what side effects are like when I'm not working.  They took blood for the genotype, then he started my immunizations for Hepatitis A and B, gave me the "pneumovax", and had them do a TB skin test, which they will look at again on Friday.  I go in 4 weeks to get blood drawn again, and I will see the doctor again in 6 weeks.  I didn't get out of there until well after 4:00.  Glad it's over, and I feel much more in control now that there seems to be a "plan".

Title: Re: First ID Specialist Appointment
Post by: Miss Philicia on April 15, 2009, 06:28:57 pm
They sound very organized and covering all of your bases.  I assume that this is a large clinic type of place?
Title: Re: First ID Specialist Appointment
Post by: decayingsinner on April 15, 2009, 07:27:41 pm
It sounds like you are in good hands. Seems pretty typical to what I went through.  I was seeing my doctor every six weeks until recently, when my medication brought my viral load to undetectable levels and my cd4 is gradually going up.  I wouldn't be surprised if the emotions were running wild during your first visit. It all seemed to be so much to handle and I did cry during my first doctor's visit. But I felt great to have an aggressive plan and the doctor reassured me that everything will be okay. Of course he was right.
Best of luck to you.
Title: Re: First ID Specialist Appointment
Post by: justaguy on April 15, 2009, 11:51:16 pm
Miss Philicia:  This is actually a "Ryan White" Clinic.  I know who Ryan White is, but I'm not sure what that distinction means exactly - that it's HIV only?  The office I went to was definitely HIV only, since all the posters, literature, etc were all HIV related.  It wasn't exactly large, but it is affiliated with a local med school, as is my primary care doctor who sent me there.  Unfortunately, the hospital they are tied to does not have a good reputation, and I'm not sure it's exactly the place I'd want to end up if I needed to be hospitalized, but we'll cross that bridge when/if we come to it.  The ID doctor seemed very knowledgeable and I think we related well.  Direct, but not gruff or anything.  I definitely got the idea that they were not used to people with any knowledge of the disease, they seemed pleased/surprised that I had done research in the past few weeks. 

Decayingsinner:  I wasn't ever that upset emotionally today, especially since I've spent so much time on here learning what to expect, plus I had a friend with me.  But my blood pressure was very high when they checked it, and it's normally just right.  I was bothered in the waiting room by how sick some of the other patients looked - it had never occurred to me that there would actually be people who had PROBLEMS  ::).  Also, I think this clinic treats everyone, regardless of ability to pay, so it was definitely an eye opening experience.  There were several people that looked like they had probably had pretty rough lives, HIV or not, and many more women than I expected, some with children.  It was very sad and it reminded me that things could certainly be worse, and it made me realize how limited my concept of this disease really was

He said he wants to see me once a month until my CD4 is well over 200 for three months in a row, so he said we'd be looking at seeing each other for the next three or four months for sure

I picked up the Atripla tonight.  My insurance saved me over $1700.  That boggles my mind.  The pills are HUGE - this will be my personal version of hell, since I have always HATED taking big pills - now I have to "for the rest of my life".  I guess it's time to get used to it!  :o  But saving the first pill for Friday night.  Trying to figure out the sweet spot time that will be late enough/early enough with an hour or so each way in case I want to go to bed early or stay up late..  I'm thinking 11pm will be my pill time. :)
Title: Re: First ID Specialist Appointment
Post by: BlueMoon on April 16, 2009, 09:07:13 pm
Excellent, the more time they spend with you the better. 

There are a lot of details to see to at first, but once they're out of the way subsequent doctor visits are much shorter.  I usually have "quickies" with mine on the way to work.  Too quick, actually.   ::) 

Good luck with the Atripla.  It seems to do the job for most people.
Title: Re: First ID Specialist Appointment
Post by: clsoca on April 16, 2009, 09:30:00 pm
Don't forget to build up a surplus of Atripla. Fill your prescriptions a few days earlier each and every month. It is legitimate to have a surplus of meds just like a diabetic would. I currently have  a 20 day surplus and my goal is to have a 90 day surplus.
Title: Re: First ID Specialist Appointment
Post by: justaguy on April 16, 2009, 10:17:32 pm
Don't forget to build up a surplus of Atripla. Fill your prescriptions a few days earlier each and every month. It is legitimate to have a surplus of meds just like a diabetic would. I currently have  a 20 day surplus and my goal is to have a 90 day surplus.

I already had a plan in place to do this based on what I'd read in other threads on here.  Since I travel a lot, I've been thinking about the best way to handle that situation too- probably take more than I need, both in the carry on and in the checked bag, plus the doctor automatically gave me a copy of the prescription to keep.  And I know with certain meds I take, I'll sometimes let it go a day or two before I remember to get it refilled, so I'm going to look into an automated refill system my local pharmacy has so this never happens.  The biggest problem I see is how I handle making sure i take it at the same time EVERY SINGLE DAY.  I mean, 11pm is my current planned dosage time, since that's about when I normally go to bed - that way I could take it at 10pm if I were going to go out, or I could take it at midnight if I get home late.  So many situations where you wind up being kept out later than you anticipated, etc.  I'll deal with it as I come to it I suppose. :)
Title: Re: First ID Specialist Appointment
Post by: BlueMoon on April 16, 2009, 10:42:21 pm
Quote
The biggest problem I see is how I handle making sure i take it at the same time EVERY SINGLE DAY.

Part of my regimen has to be taken with food, so I've been dosing at breakfast, which is my most regular meal of the day.  It's easy to remember as part of the morning routine.

I recently changed my regimen so that I now also have to take an evening dose.  I had a hard time remembering for the first few weeks, and while I didn't miss a dose I was an hour or two (or four  :-[ ) late a number of times.  I fixed that by setting an alarm clock downstairs to go off at 8:00 every night.  In less than two weeks it has already saved me four times. 

You might also want to make it a habit to mark a calendar when you take your dose, in case you can't remember later.
Title: Re: First ID Specialist Appointment
Post by: Miss Philicia on April 16, 2009, 10:45:53 pm
So many situations where you wind up being kept out later than you anticipated, etc.  I'll deal with it as I come to it I suppose. :)

Don't you have pockets, honey?  Even at the baths you can keep them in a locker.
Title: Re: First ID Specialist Appointment
Post by: Ann on April 17, 2009, 07:54:47 am

Don't you have pockets, honey?  Even at the baths you can keep them in a locker.


You can buy pill boxes that have daily, removeable sections that fit easily into a pocket. These types of pill boxes are excellent for keeping you on track with your meds as well. They take the guess-work out of "did I take my meds today"? I even found one online that is disguised as a lighter.

Ann


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Title: Re: First ID Specialist Appointment
Post by: Miss Philicia on April 17, 2009, 11:37:58 am
I even found one online that is disguised as a lighter.

Ann


Mine is a much more glorious spherical Royal Copenhagen stainless steel one, with a swivel door.  It's over a decade old now and no longer in production I think.  If I had to purchase a new one it would be this one:

http://www.scandezign.com/Shop/info.htm?catid=62&id=43004

It's only $27.  One might as well get something presentable.  Danish design and all that, sweetie.  I'm not tempted to replace mine because due to it's age the swivel door has to be secured with a small piece of tape so that the pills don't come out in my pocket.  I pretty much only use it for travel these days, but it was a very worthy expenditure.
Title: Re: First ID Specialist Appointment
Post by: Ann on April 17, 2009, 12:32:10 pm
Oooooh get you and your Danish design! I have a monthly tray-style box with individual boxes for each day. Cheap and cheerful wins the day in my house.
Title: Re: First ID Specialist Appointment
Post by: justaguy on April 17, 2009, 11:39:38 pm
Mine is a much more glorious spherical Royal Copenhagen stainless steel one, with a swivel door.  It's over a decade old now and no longer in production I think.  If I had to purchase a new one it would be this one:

http://www.scandezign.com/Shop/info.htm?catid=62&id=43004

It's only $27.  One might as well get something presentable.  Danish design and all that, sweetie.  I'm not tempted to replace mine because due to it's age the swivel door has to be secured with a small piece of tape so that the pills don't come out in my pocket.  I pretty much only use it for travel these days, but it was a very worthy expenditure.

I like it it!  Never even occurred to me that they would have smaller pillboxes than the weekly or monthly variety.  Perfect.

Just took my first Atripla.  About to go to bed.  Kinda hoping for some crazy dreams.

So weird, three weeks ago I didn't have a CLUE I was positive - now here I am already on meds.  Life never fails to surprise.

I really think I might like this clinic.  I had to go back today so they could "read" my tuberculosis skin test.  They remembered me by name when I walked in, and they all refer to each other by first names, it's a very friendly, almost family-like atmosphere.

This forum is great.  Thanks everyone :)

Title: Re: First ID Specialist Appointment
Post by: Miss Philicia on April 18, 2009, 12:29:34 am
I pride myself on my vocation as a personal shopper.  I'll also have you know that link was $14 less than another place.
Title: Re: First ID Specialist Appointment
Post by: Ann on April 18, 2009, 05:31:34 am


I pride myself on my vocation as a personal shopper.  I'll also have you know that link was $14 less than another place.


Now you're talking more my price range. :D You ought to look into the personal shopper thing more seriously. Could be a nice little money-earner for you!

Justa, I hope your first date with Atripla went well for you - and if you had vivid dreams, they were very pleasant  vivid dreams.

Ann
Title: Re: First ID Specialist Appointment
Post by: justaguy on April 18, 2009, 10:34:30 am
Thanks Ann.   :)

I have to admit - it was a little rough.  After hoping to be one of the lucky ones that feels no real effects, I definitely did.  None of the dreams were very scary, but they were CONSTANT.  After waking up the 4 or 5th time of the night,  it started getting annoying.  There were parts of the night where I"m not sure I was awake or asleep, maybe a little bit of both, but I remember theorizing at one point that HIV must be a government conspiracy to get us to take mind control pills and that I'd been tricked into doing it.  Hoping it gets better with time and consistent use.  :-\
Title: Re: First ID Specialist Appointment
Post by: Ann on April 18, 2009, 10:41:25 am

There were parts of the night where I"m not sure I was awake or asleep, maybe a little bit of both,


Oooh, I had that experience (http://blogs.poz.com/ann/archives/2008/09/a_virgin_no_mor.html) too the one and only time I took Sustiva. It's a really strange sensation!

Hope things improve for you soon. Hang in there!

Ann
Title: Re: First ID Specialist Appointment
Post by: freaky_dream on April 18, 2009, 02:50:29 pm
Mine is a much more glorious spherical Royal Copenhagen stainless steel one, with a swivel door.  It's over a decade old now and no longer in production I think.  If I had to purchase a new one it would be this one:

http://www.scandezign.com/Shop/info.htm?catid=62&id=43004

It's only $27.  One might as well get something presentable.  Danish design and all that, sweetie.  I'm not tempted to replace mine because due to it's age the swivel door has to be secured with a small piece of tape so that the pills don't come out in my pocket.  I pretty much only use it for travel these days, but it was a very worthy expenditure.

That pill box is secksi. Gonna get me one too soon. Thanks Miss.
Title: Re: First ID Specialist Appointment
Post by: Inchlingblue on April 19, 2009, 03:27:40 pm
Since I travel a lot, I've been thinking about the best way to handle that situation too- probably take more than I need, both in the carry on and in the checked bag, 

I have a friend who is a LTS and travels and he advised me to never take meds in your checked bags. It makes sense to me. Apart from the fact that the bag can get lost or stolen or delayed, there are probably big temperature differences when it's placed in cargo or on the way to cargo.

And of course, taking more than you need is also highly recommended, as you already are planning on doing.
Title: Re: First ID Specialist Appointment
Post by: justaguy on April 19, 2009, 10:24:38 pm
Atripla night 2 was much more peaceful.  I ate a low fat meal, 4 hours before pill time, ate nothing until then, then drank copious amounts of water with it.  Aside from a few dreams, it was a normal night.  Consider me relieved.

Title: Re: First ID Specialist Appointment
Post by: Ann on April 20, 2009, 06:51:30 am
Good to hear, Justa. Hope your success continues.

Ann