Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
December 26, 2014, 07:28:00 PM

Login with username, password and session length


Members
Stats
  • Total Posts: 650490
  • Total Topics: 49665
  • Online Today: 206
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 5
Guests: 119
Total: 124

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Why itís important to be pro-active about oneís own health  (Read 3315 times)

0 Members and 1 Guest are viewing this topic.

Offline toplad

  • Member
  • Posts: 14
Hi

Just wanted to share the latest visit to my HIV consultant who I have been with since testing positive last year in August. My numbers have never really been high and I was told to keep a close eye and to start thinking about preparing myself to go on meds at some point sooner rather than later.  In one of my previous posts I referred to the fact that I felt my consultant was not proactive enough in his approach Ė well yesterday just brought it all back home Ė so much so I am moving to a different hospital as I have lost all faith in him.

Here goes:  I always get my results via telephone a week or so before seeing my doctor so I can prepare and write down any questions or concerns I might have (brilliant advice given to me here on Aidsmeds). I arrived yesterday for my appointment and my doctor greeted me, sat down, opened my file and showed me a summary of my results which he had written down and proceeded to say they were relatively ok. I checked his numbers and yes,  thatís right, he had one of my CD4ís as being a lot higher than it was.  After pointing this out, and showing HIM on HIS computer screen where the correct result is, he merely moved on to ask me the blunt question ďso have you had any more though on going onto treatmentĒ. No apologies, no lets review your numbers, nothing.  I donít know if it was for show in front of a foreign doctor who was sitting in on the consultation (whom I was introduced to but never asked if I was ok with him being there). This one result might seem a bit trivial but it is a deciding indicator as the incorrect result falls on the ďwait before you go on meds sideĒ and the correct one is ďstart considering meds sideĒ.  In answer to his question I suggested we go through all the questions I had written down and perhaps that would shed some light.  This turned out to be tedious and felt like drawing blood out of a stone. There was no forthcoming approach, no interest in discussing things, just waiting for me to ask and him to answer. His answers at best, were mediocre in their accurateness in answering my query. 

I then moved on to talk to him about potential indicators of my immune system being more damaged.  He went through a few things with me, one suggestion being I should look out for Oral Hair Leukoplakia.  I said I do sometimes suffer from similar oral infections and he said he would examine my mouth before the end of the consultation. He mentioned prescribing me an inhaler as well to help with allergies I have. After a few more questions and talk he said right then, if thatís it, then I could go!!!! I had to remind him to right out the prescription for the inhaler.  When he had done this he said, right, if you hurry you can still get to the pharmacy before closing time.  I then had to remind him that he was to examine my mouth. Oh yeah, he said nonchalantly. I responded should I see him in about 3 or 4 months time Ė his response Ė yeah around there, or sooner if I like.

I left feeling totally deflated.  What gets me is that the whole course of the consultation, if I had not picked up on his errors,  would have been based on a set of incorrect results, the nature of which being of decision making importance.  He was totally apathetic and if I had not been on-top of things and pro-active, I would not have got the answers to my questions, not have picked up on his errors and be a lot worse off.  My appointment was for an hour. Was out of there within 30 minutes!

Thanks for letting me vent.  To me this whole episode just shows that it is best to be educated, knowledgeable and pro-active about ones health. 

Good health to you all.

Toplad
First diagnosed: 25 August 2006
11/09/06: CD4: 330 Viral: 3900 (baseline)
24/11/06: CD4: 460 Viral: 6600
19/03/07: CD4: 370 Viral: 79900
20/04/07: CD4: 350 Viral: 21900 CD4 %: 28.1
01/06/07: CD4: 330 Viral: 7000 CD4%: 29
29/06/07: CD4: 400 Viral: 7600 CD4%: 24.5
30/09/07: CD4: 324 Viral: 6308
28/01/08: CD4: 304 Viral: 4493

Offline keyite

  • Member
  • Posts: 514
Re: Why itís important to be pro-active about oneís own health
« Reply #1 on: July 20, 2007, 11:06:30 AM »
Well, if this is supposed to pass for standard of care then God help us all! Do make the change - not all consultants are as unprofessional and disinterested as he plainly is. You might also want to consider letting the trust know about this guy so that other patients can be spared this kind of nonsense.

So what was your numbers like this time? Were these the results from 01/06/2007? If so, it strikes you have a good CD4%...

Offline toplad

  • Member
  • Posts: 14
Re: Why itís important to be pro-active about oneís own health
« Reply #2 on: July 20, 2007, 11:17:08 AM »
Hey Keyite

Yep, have written a letter to the trust informing them of this.  Unfortunately a lot of the people I have come into contact with within the trust have this apathetic approach.

My latest results are:

CD 4: 400 (up 70) :-)
Viral: 7600 (up 600)
CD4%: 24.5 (down 4.5) :-(

Have a good weekend.

G
First diagnosed: 25 August 2006
11/09/06: CD4: 330 Viral: 3900 (baseline)
24/11/06: CD4: 460 Viral: 6600
19/03/07: CD4: 370 Viral: 79900
20/04/07: CD4: 350 Viral: 21900 CD4 %: 28.1
01/06/07: CD4: 330 Viral: 7000 CD4%: 29
29/06/07: CD4: 400 Viral: 7600 CD4%: 24.5
30/09/07: CD4: 324 Viral: 6308
28/01/08: CD4: 304 Viral: 4493

Offline keyite

  • Member
  • Posts: 514
Re: Why itís important to be pro-active about oneís own health
« Reply #3 on: July 20, 2007, 01:05:37 PM »
My numbers are pretty similar, except my VL is much more of an untamed beast. Even though your numbers actually have been very stable over the past year and your VL mostly very well contained you've obviously been prompted more than once about going onto meds.

In contrast, I've had initial discussions about meds with my consultant (mostly prompted by me) but she's has been quite clear that she sees no need to initiate meds just yet. Unless I really want to, that is.

Interesting just how different the advice can be...

Which trust have you been using so far?

Offline koksi

  • Member
  • Posts: 82
Re: Why itís important to be pro-active about oneís own health
« Reply #4 on: July 20, 2007, 01:07:15 PM »
I feel that I have been having a similar experience.  Earlier this year I experienced erroneous test results.  The docs don't seem to care... I sense no urgency and little understanding of my situation.  I find it frustrating.

If you have good health insurance, I would say you should seek out HIV specialists with more concern...
seroconversion in March of 2006
positive test May 2006

10/2013: Undetectable, CD4 1000
2009:  Began Atripla

10/2007:  VL 2,300 // no CD4 numbers! :-(
09/2007:  Begin Truvada/Reyataz/Norvir
08/2007:  VL 824,000 // CD4 344 // 21%
06/2007:  VL 326,000 // CD4 351 // 17%
04/2007:  VL 410,000 // CD4 242 // 26%
06/2006:  VL 444,893 // CD4 479 // 21%
05/2006:  VL >500K    // CD4 402 // 17%

Offline allanq

  • Member
  • Posts: 692
  • still life with pills
Re: Why itís important to be pro-active about oneís own health
« Reply #5 on: July 20, 2007, 03:50:38 PM »
Toplad,

I do hope that you'll find a different doctor soon. The mistakes that consultant made are fireable offenses in my book.

It is common courtesy for a doctor to ask the patient if it's OK for another person to observe during your appointment. And you should not have to constantly look over your doctor's shoulder to make sure he's not making mistakes. It's a good thing that you were able to catch his mistakes.

It went through several doctors before finding one whom I trust and feel comfortable with.

Keep on taking an active role in your own treatment. And that's true even after you find a doctor you trust.

Good luck.

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,107
Re: Why itís important to be pro-active about oneís own health
« Reply #6 on: July 20, 2007, 07:54:33 PM »
Get a new doc!!!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: Why itís important to be pro-active about oneís own health
« Reply #7 on: July 20, 2007, 08:39:13 PM »
Unfortunately a good doctor is hard to find. It took me finding mine at my ASO and found my primary through him.  And since they have worked together in the past, they don't have a problem communicating. I think you should definitely find another doctor and when you do explain to him/her that you will come to appointments with questions..Explain that you are very proactive about your health...But don't give up, they are out there.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Oceanbeach

  • Member
  • Posts: 3,565
Re: Why itís important to be pro-active about oneís own health
« Reply #8 on: July 21, 2007, 12:54:04 AM »
I have been introduced to Interns who were training with my doc, before they move to Africa.  I was always asked and always included the visitor in conversation re: my health.  I have been asked by the Medical Information Officer (during intake),  if a new hire member of his staff sit in.  In this case she was doing outreach work with the hispanic community.  I have always been asked.

Get a new doctor.  I had the first 4 years w/AIDS getting the best care, the second 4 years, with the worst, and the past 3 years with the best care.  Over the last 3 years, I have improved numbers and PN is slowly healing.  Have the best day
Michael

Offline Miss Philicia

  • Member
  • Posts: 24,522
  • celebrity poster, faker & poser
Re: Why itís important to be pro-active about oneís own health
« Reply #9 on: July 21, 2007, 01:12:03 AM »
Certainly there must be many, many better doctors available in London, toplad
"Iíve slept with enough men to know that Iím not gay"

Offline StrongGuy

  • Member
  • Posts: 492
Re: Why itís important to be pro-active about oneís own health
« Reply #10 on: July 21, 2007, 01:13:26 AM »
I agree with others - get a new doc. I've been lucky with my ID docs and trust my current one with my life (literally), but have had some other docs through the years (specialists mostly) who I saw once or twice and never went back.

:)
"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline Dragonette

  • Member
  • Posts: 1,190
  • Spring symptoms
    • NotPerfectAtAll
Re: Why itís important to be pro-active about oneís own health
« Reply #11 on: July 21, 2007, 07:39:21 AM »
I've had a similar experience with a new doctor and managed to trade her in for the head of the department, good riddance! I haven't met him yet but anyone'll be better basically. By all means try to change or if not possible, at least mention to him next time that it makes you anxious when you feel that the doctor is not paying attention and use the 2 examples. Maybe it was a slipup due to a bad day and maybe it's a habit!

Good luck with it!
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline rkeat25

  • Member
  • Posts: 32
Re: Why itís important to be pro-active about oneís own health
« Reply #12 on: July 21, 2007, 08:09:31 AM »
The relatioship that one who has HIV has with his doctor is an important one.  Just as you wouldn't continue to date someone that weren't hitting it off with - you shouldn't stay with a doctor that you don't feel is a match for you.

Good luck with the search. 

~ronnie

Offline Carolann

  • Member
  • Posts: 233
Re: Why itís important to be pro-active about oneís own health
« Reply #13 on: July 21, 2007, 02:06:12 PM »
Yes, advocating for yourself is the best thing you can do regardless of what disease you are fighting, because they will let things get worse, especially in the HMO arena. Doctors are well aware of who is a pushover and who has done their homework on their disease.

 I find that the length of my appointment depends on what issues I bring to the table, and I find that I must often insist on tests that they don\'t want to run, and I have to stick to my guns to get things looked into. It is very much true that the squeaky wheel gets the oil nowadays. One of the tests that I often have to insist on is my hemoglobin which is erratic. This is how they decided to band my roids, because my doc finally got sick of me complaining at every visit, and the data didn\'t lie.

If I had been passive, I would still be suffering more from these buggers.  So yes you must be your own advocate. Unfortunately, the doctors that are on ball are few and far between, and we often have to work with the doctor we are given and train them on how to meet our health needs. This requires always communicating and making sure our concerns are addressed, sometimes being a thorn on their sides, when our quality of life is at risk.

CA


Offline Bucko

  • Member
  • Posts: 1,947
  • You need a shine, missy!
    • The Spin Cycle
Re: Why itís important to be pro-active about oneís own health
« Reply #14 on: July 21, 2007, 03:10:05 PM »
I think that this points out the necessity of being an active partner in your own care. Your doctor is only part of the equation.

But I'd be hard-pressed to think of many docs I've had over the last eleven years who weren't arrogant asses, especially the Infectious Disease specialists. It kinda goes with the territory.

Brent
(Who will confront anyone whom he feels is being insensitive)
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline rkeat25

  • Member
  • Posts: 32
Re: Why itís important to be pro-active about oneís own health
« Reply #15 on: July 21, 2007, 04:11:42 PM »
Yes, Brent you are right.  Most of the ID docs work in teaching hospitals affiliated with Universities and big research grants.  Academia is full of big heads - the doctors among them are often times never an exception.

~ronnie

Offline Bucko

  • Member
  • Posts: 1,947
  • You need a shine, missy!
    • The Spin Cycle
Re: Why itís important to be pro-active about oneís own health
« Reply #16 on: July 21, 2007, 04:47:31 PM »
Let me qualify: when I was lucky enough to have both a PCP and ID specialist, the PCPs were usually great. It was the ID docs who should have had an attitude transplant.

Brent
(Who isn't so lucky these days)
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline Miss Philicia

  • Member
  • Posts: 24,522
  • celebrity poster, faker & poser
Re: Why itís important to be pro-active about oneís own health
« Reply #17 on: July 22, 2007, 07:50:01 PM »
I can't say I've had arrogant asses for doctors.  One was so delightful he wore Tweety Bird socks every day.  He was a bit flirtatious too.

My last one in NYC was a rather quiet sort, and had actually once been Keith Haring's doctor and had some of his art work in the office.  For some reason I did a google of his name recently and someone had made some comment that he'd picked up the bottle again and wasn't recommended any more.  Of course, I'd take that with a grain of salt... internet being the source of all the world's lies.
"Iíve slept with enough men to know that Iím not gay"

Offline Razorbill

  • Member
  • Posts: 622
Re: Why itís important to be pro-active about oneís own health
« Reply #18 on: July 22, 2007, 08:14:18 PM »
Mine is very laid back - almost too much so for my taste.  But it's a good balance to my nervousness.  And the slow and steady approach has worked well so far.  If your not happy and you have options, go for it. 

Offline Iggy

  • Member
  • Posts: 2,435
Re: Why itís important to be pro-active about oneís own health
« Reply #19 on: July 22, 2007, 08:54:29 PM »
Adding my voice to the chorus of get a new doc.

Offline toplad

  • Member
  • Posts: 14
Re: Why itís important to be pro-active about oneís own health
« Reply #20 on: July 24, 2007, 10:25:37 AM »
Thanks to everyone for the feedback, advice and sharing.  I have informed the patient liaison officer at the trust that I will be leaving the trust and have given him my reasons for doing so. I have not made any accusations but have stated plainly that I wish to hava clinician who is more accurate, attentative and proactive in their approach.

Hope everyone is having a good week.

Kind regards
g
First diagnosed: 25 August 2006
11/09/06: CD4: 330 Viral: 3900 (baseline)
24/11/06: CD4: 460 Viral: 6600
19/03/07: CD4: 370 Viral: 79900
20/04/07: CD4: 350 Viral: 21900 CD4 %: 28.1
01/06/07: CD4: 330 Viral: 7000 CD4%: 29
29/06/07: CD4: 400 Viral: 7600 CD4%: 24.5
30/09/07: CD4: 324 Viral: 6308
28/01/08: CD4: 304 Viral: 4493

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.