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Author Topic: What should I ask?  (Read 2367 times)

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Offline DanMo

  • Member
  • Posts: 235
  • Finally undetectable! ;D
What should I ask?
« on: April 25, 2011, 09:50:54 PM »
I have my first appointment to get my results of my blood labs on Wednesday (27 April). I also meet my doctor for the first time.

I want to be prepared and take advantage of this first appointment, so what sorts of things should I ask about? I know I'm going to discuss the CD4 and VL numbers with her and options for treatment down the line.

Looking back, when you had your first appointment, what do you wish you would have asked about or paid some attention to?

Dan
“I tried to drown my sorrows, but the bastards learned how to swim, and now I am overwhelmed by this decent and good feeling.” —Frida Kahlo

11 Feb 2011 - Preliminary positive
07 Mar 11 - Inconclusive WB
14 Mar 11 - Diagnosed positive
05 Apr 11 - 355 (21%) / VL: 186,054
27 Apr 11 - 390 (20%) / VL: 285,095
06 Jun 11 - 298 (19%) / VL:  78,380
01 Aug 11 - > STARTED ATRIPLA <
30 Aug 11 - 699 (31%) / VL: 1,938
03 Nov 11 -                / VL: 645
27 Dec 11 - 559 (35%) / VL: 1,189
11 Jan 12 -                 / VL: <20
09 Apr 12 - 686 (40%) / VL: UD
11 Jul 12 - 793 (37%) / VL: 25

Offline Inchlingblue

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Re: What should I ask?
« Reply #1 on: April 25, 2011, 09:57:19 PM »
One thing I recommend is to ask for copies of the results of the blood work. I like taking it home and looking through it in my own time. I've kept copies of all of them since my first one.

Offline leatherman

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Re: What should I ask?
« Reply #2 on: April 25, 2011, 10:08:31 PM »
write down any questions or topics to discuss and take that into the exam room with you. Pull it out, make sure to write your numbers down, and check to see if the doc answered all your issues or whether you need to bring up something the doctor missed.

not only will this help you remember and track things; but it'll show your doctor that you're concerned enough about your health care to really want to track and remember to get answers - and in turn that should help make your doctor more concerned about tracking and helping you care for your health. ;)
leatherman (aka mIkIE)


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

Offline DanMo

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  • Finally undetectable! ;D
Re: What should I ask?
« Reply #3 on: April 25, 2011, 11:17:27 PM »
Thanks you guys for the good ideas. I do have a notebook I was thinking about writing down questions as I thought of them, but I don't really know what to ask.

I'm going out of the country in May and won't be back until June. So I really want to make sure I understand everything.

I'm planning about asking about STDs (they've told me they usually do a full check up for first-timers). Also, some general throat soreness that I've been having.

Also, on the lab results, people usually only talk about the CD4 and VL... is there anything else on those results that I should pay attention to or ask about?
“I tried to drown my sorrows, but the bastards learned how to swim, and now I am overwhelmed by this decent and good feeling.” —Frida Kahlo

11 Feb 2011 - Preliminary positive
07 Mar 11 - Inconclusive WB
14 Mar 11 - Diagnosed positive
05 Apr 11 - 355 (21%) / VL: 186,054
27 Apr 11 - 390 (20%) / VL: 285,095
06 Jun 11 - 298 (19%) / VL:  78,380
01 Aug 11 - > STARTED ATRIPLA <
30 Aug 11 - 699 (31%) / VL: 1,938
03 Nov 11 -                / VL: 645
27 Dec 11 - 559 (35%) / VL: 1,189
11 Jan 12 -                 / VL: <20
09 Apr 12 - 686 (40%) / VL: UD
11 Jul 12 - 793 (37%) / VL: 25

Offline Inchlingblue

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Re: What should I ask?
« Reply #4 on: April 25, 2011, 11:27:57 PM »
Also, on the lab results, people usually only talk about the CD4 and VL... is there anything else on those results that I should pay attention to or ask about?

It can vary among doctors the extent of blood work they order but most will usually order a metabolic panel and a lipid panel. If you Google those terms it explains what series of tests are involved. If there's anything out of the ordinary the doctor will usually bring it up. A test could be slightly higher or lower than normal and this is usually not anything to worry about, depending on the test and the level, etc.

There will probably also be the results of resistance testing to see if there are any drugs you might be resistant to.

As far as the HIV results there's also CD4%, that's an important number to look out for.
« Last Edit: April 25, 2011, 11:37:48 PM by Inchlingblue »

Offline buginme2

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Re: What should I ask?
« Reply #5 on: April 25, 2011, 11:30:13 PM »
Try not to get overwhelmed with the first visit.  My first visit wasn't that long ago.  Basically the Dr. did most of the talking.  I brought my other half with me and we both just sort of sat there while the Dr. talked.  If you can, I suggest bringing someone with you on your first visit.  It can be overwhelming.

The blood tests they usually do are a CBC.  They check your red blood cell count (my doctor goes over this with me every visit), you white blood cell count (your immune system), Viral Load, and blood tests checking your kidney and liver functions.  That seems to be the tests they do each visit.  Your doctor should explain each test.  However, don't get caught up on all the numbers, especially on your first visit.  Your doctor should also be doing a resistance test.  

What questions do you have?  Being newly diagnosed I'm sure you have the "what does this mean, how long do I have?" question.  I know I did.  My doctor basically explained the answer to that question before I even had the chance to ask.  The thing about HIV is that in the begining, you go to the doctor a lot!! So don't worry, you most likely will think of a question to ask after you leave.  Just write it down for next time.  good luck!



Offline DanMo

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  • Posts: 235
  • Finally undetectable! ;D
Re: What should I ask?
« Reply #6 on: April 25, 2011, 11:52:21 PM »
Thanks you guys for the insights. I really want to be prepared before I go in so I don't feel too overwhelmed and completely blank out and not know what to say or ask.

On a side note: I don't actually have a "doctor"... I looked her up online and she's registered as a Nurse Practitioner. Does anyone have any experiences with NPs? How different are they from doctors? (I'm not worried about having an NP: I wouldn't be assigned one if they couldn't handle HIV treatment; I'm just curious).
“I tried to drown my sorrows, but the bastards learned how to swim, and now I am overwhelmed by this decent and good feeling.” —Frida Kahlo

11 Feb 2011 - Preliminary positive
07 Mar 11 - Inconclusive WB
14 Mar 11 - Diagnosed positive
05 Apr 11 - 355 (21%) / VL: 186,054
27 Apr 11 - 390 (20%) / VL: 285,095
06 Jun 11 - 298 (19%) / VL:  78,380
01 Aug 11 - > STARTED ATRIPLA <
30 Aug 11 - 699 (31%) / VL: 1,938
03 Nov 11 -                / VL: 645
27 Dec 11 - 559 (35%) / VL: 1,189
11 Jan 12 -                 / VL: <20
09 Apr 12 - 686 (40%) / VL: UD
11 Jul 12 - 793 (37%) / VL: 25

Offline spacebarsux

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  • Posts: 1,350
  • Survival of the Fittest
Re: What should I ask?
« Reply #7 on: April 26, 2011, 12:07:29 AM »
Hey Dan, in addition to what everyone has mentioned I thought I'd chime in. So other than CD4 and VL, my doc made me go thru a complete range of bloodwork for kidney function, liver function, pancreas, cholestrol level, sugar levels- I'm sure I'm forgetting a few others.    This one is crucial- my doc also got my blood tested for other STDs. Hep C and Hep B being most important.   I also had to get a Chest X- Ray and an ultrasound to just ensure my organs were fine.    When I went back he told me that I also need to get my urine sample tested for some stuff but I've been too lazy to do that.   I should add, I don't live in the States and it seems as though every country has its own treatment protocol.
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 tednlou2

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  • Posts: 4,760
Re: What should I ask?
« Reply #8 on: April 26, 2011, 12:11:44 AM »
I actually wish I would have taken video of my appts--especially the first ones.  It gets hard trying to remember everything discussed.  I remember meeting with the HIV pharmacist in her office where she covered all the drug classes, pros/cons, etc.  After leaving, I couldn't tell you what she said.  I also thought I would have liked to create a youtube page, so others newly dx'd could see what first appts look like, lingo, etc.  When I searched for videos like that, I couldn't find any.  But that is me...coming from a news background.  But, I know some who take audio of their doc appts.  

Besides that, I typed out all the questions I wanted to ask.  My partner was there, so he took notes as best he could.  We even note my blood pressure and temp readings.  If you haven't been vaccinated for Hep A and B, that is a good question to ask---also flu and pneumonia vaccines.  If you are feeling depressed, talk to your doc about that.  I know my doc has never asked about my mental health.  Also, getting insurance and ADAP questions answered is very important.  I didn't have insurance at the time and needed ADAP; however, I had no idea ADAP even existed.  I didn't know what an ASO was.  They assumed I knew where to go for ADAP, which is Volunteers of America here.  The clinic has a women whose job it is to talk to people about ADAP.  She discussed it with me, but never told me I needed to contact VOA.  Now, I would know I need to be proactive and make sure I know everything I need to know.

Offline buginme2

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  • Posts: 2,834
Re: What should I ask?
« Reply #9 on: April 26, 2011, 01:30:44 AM »
To echo what others have said your first appointment they should test you for hep a b an c. If you havent already been vaccinated for a and b you should. 

As far as seeing a nurse practioner its prob not a big deal.  I would check to make sure she is listed as an hiv specialist however.  You can check to see if she is at www.aahivm.org

Offline +/-

  • Member
  • Posts: 45
Re: What should I ask?
« Reply #10 on: April 26, 2011, 06:08:00 AM »
Hi DanMo

Don't get so overwhelmed on your first appointment. Most probably your doctor will answer most of your questions without you having to ask.

On my second appointment I remember asking for a copy of the test. I think it's a good idea to keep track of your counts especially once you're on treatment.

If you are experiencing any health problems, make sure that you bring them to your doctor's attention. That is very IMPORTANT, apart from that I am sure everything will be OK.


Offline carousel

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  • Posts: 821
Re: What should I ask?
« Reply #11 on: April 26, 2011, 06:41:48 AM »
Have absolutely no idea what I talked to my first doctor about, as I was still in shock and don't think I was able to listen.

I agree about writing stuff down in case you forget them.  But also it's early stages, so you will learn more as you go on.

I didn't have to go on medication at first, but your doctor will guide you about this and talk this through with you.

The main thing for me at the beginning was to feel confident about who I was seeing, which I didn't.  Although my clinic offered a out of hours testing service, where I was diagnosed, the appointments they offered after were always in the middle of the day.  I just wasn't able to fit them into my work day, and as they were unable to offer any choice, I decided to change clinics.  For me this was more important at first, than having to find out exactly what was going on medically.  Also I personally preferred to see a male doctor.

At my early appointments, we talked more about the shock and stress, disclosure, drugs, alcohol and whether there were other services that I need to be guided to, such as therapy or support groups.

There is a lot of information out there, but the sheer amount and technical details just made my head hurt and gave me the heebie jeebies.

So kind of think you should take it slowly.

Offline Teresa

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  • Posts: 1,753
Re: What should I ask?
« Reply #12 on: April 26, 2011, 07:30:52 AM »
I went to hubbys doctor appointments with him. I took a notebook which I had wrote down any questions that we had, and I used it to take notes on what the doctor said. Its a great idea to take notes because it can be a little overwhelming. I know we were and I was glad I took notes. I asked for copies of his labs and I have them in a 3 ring binder. I also use the graph your labs. Thats a great feature they have here. Its under treatment in the gray bar. I strongly suggest you check it out.
Best of Luck
Teresa
Hubby HIV+ 5/5/06
CD4:320
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)
 

Offline wolfter

  • Member
  • Posts: 4,360
Re: What should I ask?
« Reply #13 on: April 26, 2011, 09:51:42 AM »
Since it's the first appointment meeting the NP, I'd handle it more like an interview.  I underestimated the value of having a doctor that I liked and trusted.  I've mentioned this before, but my previous ID was a total idiot and I didn't have the widsom to kick him to the curb. 

If you develop a relationship with person, you'll build upon that respect and receive quality care.  Another thing to consider is if she's going to act as a primary care physician.  We have some ID doctors who only treat the HIV and refer you back to your family doctor for all other issues.  My ID doctor is also my primary care provider.  Also, find out if they utilize technology in any way.  I have access to all my medical records through a medical site called Webview and also have the ability to send my doc emails with specific questions.  And of great importance, immediately make a good impression upon the receptionist.  He/she will be the person you communicate most with and is the one that usually knows more about what's going on. 

And as others have mentioned, start creating a list.  Between visits, I create a list in my daytimer and at my appointments, I usually just hand the list to my doc.

Good Luck!
Greg
productivity breeds content

Offline DanMo

  • Member
  • Posts: 235
  • Finally undetectable! ;D
Re: What should I ask?
« Reply #14 on: April 26, 2011, 08:22:33 PM »
Tednlou2: I have all the HEPs down as something to talk with my NP about. I've never been vaccinated for the flu though. I've never had the flu before, so I guess I'll have to discuss that as well.

It's interesting you mention the mental health issue: the clinic I'll be treated at has a very good rep in the community for having great patient care. I can attest to that. Right before my first appointment at the Central Health Department, the smaller, HIV specific clinic called me to remind me of the appointment and afterwards called me up to see how it went and if I had any questions. They recommended I switch my treatment over there and I said yes! They also called me a couple of days later asking me if I wanted to also schedule a Mental Health appointment right before my appointment with my NP—just to show me what they had in terms of mental health support services and possibly sign me up.

buginme2: Couldn’t find her on that list, but I did find some other doctors who work at the Health Department… so I guess maybe she works under one of them?

wolfter: I like what you say about treating it like an interview… this lady will be the one taking care of me for months (if not years) to come, so I should start evaluating her and see if I like and have a rapport with her.

Thanks everyone for the sound advice! I’ll let y’all know what happens tomorrow.
“I tried to drown my sorrows, but the bastards learned how to swim, and now I am overwhelmed by this decent and good feeling.” —Frida Kahlo

11 Feb 2011 - Preliminary positive
07 Mar 11 - Inconclusive WB
14 Mar 11 - Diagnosed positive
05 Apr 11 - 355 (21%) / VL: 186,054
27 Apr 11 - 390 (20%) / VL: 285,095
06 Jun 11 - 298 (19%) / VL:  78,380
01 Aug 11 - > STARTED ATRIPLA <
30 Aug 11 - 699 (31%) / VL: 1,938
03 Nov 11 -                / VL: 645
27 Dec 11 - 559 (35%) / VL: 1,189
11 Jan 12 -                 / VL: <20
09 Apr 12 - 686 (40%) / VL: UD
11 Jul 12 - 793 (37%) / VL: 25

Offline phildinftlaudy

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Re: What should I ask?
« Reply #15 on: April 26, 2011, 08:33:44 PM »
For my first visit
1) Definitely gauge the type of doctor you have in terms of relationship building - i.e. willingness to take time with you and respond to your questions, as well as to explain things in terms that are understandable
2) I had 16 vials of blood drawn on my first round --- cbc, lipid, genotype, cryto, other bacteria/viruses, hep, syphillis, etc.  ----  I almost passed out after the 12th vial  (LOL) - I've gotten better since.  I asked about every test - what it was for -
3) Definitely get copies of your labs - I have access to mine electronically - after my doctor reviews them via the lab site and also via my medical insurance (Aetna)
4) Ask about their opinion on whether you should have both an ID doc and Primary Care doc - I have both - but mainly see my ID doc - my ID recommended I have both because she has limited office hours (but she is awesome)
5) Other than the above, go with the flow - and incorporate what others have said ---

Hope you have a good, productive first visit and that it turns out to be a great relationship with your doc.  I am on my 3rd doc - due to getting private insurance and moving to Miami.  I hope to have my current doc for a long time to come - or until there is a cure   ;D
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

 


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