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Author Topic: disclosure  (Read 3217 times)

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Offline tommy246

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disclosure
« on: September 06, 2009, 05:24:07 AM »
I am, going to have my first test to check out my prostate gland at a private clinic (my hiv is treated at main public hospital ),should i tell the doc i am hiv pos or is it irrevelant, im not sure as i dont know if as part of the test they will do a blood test.
My second question is i have just got over pnuemonia and have a xray on the 15sep and visit specialist at hospital on 22nd. I am sure if there wasnt such a demand for the cat scans in the hospital they would give me one of these as they reveal alot more than an xray,so as i have access to private medical care i was thinking of getting a cat scan and second opinion that all is fine what do you think .
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline Ann

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Re: disclosure
« Reply #1 on: September 06, 2009, 06:58:26 AM »
Tommy,

I've never heard of anyone getting a cat scan over pnuemonia issues. X-rays are standard.

As for disclosing your hiv status, you don't need to just because someone is going to draw your blood. They are supposed to treat each and every patient as though they have a blood-borne illness. It's called "universal precautions".

Because every doctor and health-care provider should be following universal precautions at all times, the main reason for disclosing to a doctor is to give them your complete medical history so they can give you the best care. If you don't feel comfortable disclosing to a particular doctor, there's no law that says you have to. However, if there's a problem or complications arise, it's probably going to come out anyway.

In short, it's up to you, but it's in your own best interest to give your complete medical history.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline tommy246

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Re: disclosure
« Reply #2 on: September 06, 2009, 09:17:15 AM »
Thanks ann i will tell them i have hiv its not a problem for me . i was given a cat scan whilst in hospital and they said they would give me one before i left but in the end they didnt and now asked only for the xray. suppose im just being over worried but as i can get cat scans within days free with my private clinic i thought i might do it.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline Ann

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Re: disclosure
« Reply #3 on: September 06, 2009, 09:31:16 AM »
Tommy, if your recent cat scan showed no problems other than the pnuemonia issue, then you're probably going into "overkill" territory getting one just to make sure the pnuemonia is cleared up. A simple X-ray would suffice. While I understand that money isn't the issue for you, why tie up the machine and use the resources when it's not medically necessary?

I hope you're feeling better now. Good luck with the prostate exam/tests.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Inchlingblue

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Re: disclosure
« Reply #4 on: September 06, 2009, 11:45:54 AM »
While I understand that money isn't the issue for you, why tie up the machine and use the resources when it's not medically necessary?
 

Not to mention that too much exposure to radiation has been linked to higher instances of certain cancers, I think it's best to keep it to a minimum.

As far as disclosing or not in the situation you describe, I always thought most doctors make new patients fill out standard questionnaires. Even if they don't include direct questions such as  "Do you have HIV/AIDS?" they do usually include questions about what current medications a person is taking, which would surely give one away.
« Last Edit: September 06, 2009, 02:40:15 PM by Inchlingblue »

Offline physicsguy

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Re: disclosure
« Reply #5 on: September 06, 2009, 12:51:23 PM »
Quote
Even if they don't include direct questions such as  "Do you have HIV?AIDS?" they do usually include questions about what current medications a person is taking, which would surely give one away.
One always has the option of lying. I know I've lied (by omission) on those forms before.  Not when it might be important, of course, but it's really of no consequence to my dentist or optometrist that I'm positive. I did tell a dentist once, who treated it as an opportunity to make a money grab by having me come in every three months.

Offline Moffie65

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Re: disclosure
« Reply #6 on: September 06, 2009, 01:45:56 PM »
Hey guys, it is not normal to go to the car mechanic and tell them that the engine is running rough, but you cannot open the hood, because there are some secrets under there. 

Lying to the doctor, any doctor, that is going to deal with health issues in your body is only fooling yourself, and does you or the doctor no good.  Yes, for example, "Physics" tells us that it is OK to lie, and if you are going to the dentist or optometrist that there is no need to "disclose" your status.  Sorry guys, there are some side effects to HIV that can make you go blind in about two weeks.  HIV destroys teeth over time, and your dentist NEEDS to know your status to keep you in teeth for the duration of your life.

HIV is a life long diagnosis, and to keep it to yourself when with any doctor is screwing you, not them. 

Get over it, HIV is forever!
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline physicsguy

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Re: disclosure
« Reply #7 on: September 06, 2009, 02:41:52 PM »
Moffie65, please don't lie about what I said.

Offline mecch

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Re: disclosure
« Reply #8 on: September 06, 2009, 03:18:40 PM »
i guess I would tell just about any doctor.
Seems to be a matter of respect for their professionalism.
I would certainly tell a gastro intestinal or proctologist - lots of stuff going on in there if you are HIV+.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline sdguyloveslife

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Re: disclosure
« Reply #9 on: September 06, 2009, 03:58:53 PM »
Get over it, HIV is forever!

Easy for you to say, since you've been "Poz since 1983."  I was diagnosed in April of this year and I'm still trying to find my way with disclosure.  We all have our own ways of doing things and our own timelines to do them.  I hope that in 26 years from now, I can feel as "liberated" as you do about it, but a lot of this is brand new territory for me and to see you say "get over it!" is rather insensitive to those of us that don't have your experience and level of comfort with HIV.  I would much rather hear from someone like you with 26 years of experience and learn "how you did it!" 
« Last Edit: September 06, 2009, 04:14:29 PM by sdguyloveslife »
Do not condemn the judgment of another because it differs from your own. You may both be wrong.

Offline confidentIwillbeOK

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Re: disclosure
« Reply #10 on: September 06, 2009, 09:27:57 PM »
Sorry guys, there are some side effects to HIV that can make you go blind in about two weeks.

I have read bits and pieces about vision issues related to HIV/AIDS but after reading this statement today I did a deep dive.  After googling "HIV + eye problems" I found a number of sites that went into great detail about eye issues related to HIV.  Although I didn't find anything saying blindness could occur that quickly the myriad of issues made me think an eye exam would be a great idea.  First thing Tuesday morning I am going to call my optometrist and schedule an appointment.  I am definitely going to tell him about my diagnosis as I want to ensure he can do every test needed to stay on top of any potential future issues. 

When I told my dentist he thanked me and said he was really glad I told him as long term there were things we could talk about that would help with my oral/dental health.  The way I look at it is that my doctors and care givers work for me......I am not going to hide anything important about my health from them in case this bit of information could affect a treatment, diagnosis, or what tests they may want to do. 

Happy Labor day weekend,
Steve


Offline YaKaMein

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Re: disclosure
« Reply #11 on: September 06, 2009, 11:18:33 PM »
Egad! How irresponsible to incite hysteria! Please don't tell people that HIV directly causes blindness or makes our teeth fall out. It's simply UNTRUE!

Untreated HIV can lead to a compromised immune system [CD4 <200] and symptomatic AIDS, which may leave us vulnerable to opportunistic infections that can cause diseases of the eyes or mouth ... or elsewhere ... but that's the extent of it.

It's a good idea to have regular eye and dental exams regardless of one's HIV status. The choice to disclose is encouraged so one can receive the best health care based on overall health, symptoms and current treatments but not required.
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline Joe K

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Re: disclosure
« Reply #12 on: September 06, 2009, 11:36:18 PM »
I can understand your trepidation regarding disclosure and I would suggest, that until you are more comfortable with it, that you continue to be discreet.  However, when dealing with a doctor it is very self-defeating to withhold that information, because HIV can have so many effects on us, including the meds, etc..  I look at disclosure to medical professionals, as a duty I have to myself, to arm those professionals with all the relevant facts regarding my health.  There is no reason you have to write anything, as you can disclose discreetly to the doctor in person.

Even though Tim uses strong language, he's right in that you will just have to get over disclosing your status.  But nobody says you have to do it tomorrow.  I suggest that you disclose to someone when it is relevant and that includes doctors, dentists, sexual partners and anyone else you think should know.  It will become easier in time, but until it does, just do what feels right to you.  Just don't let your fear of disclosure impede your medical care.

Offline edfu

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Re: disclosure
« Reply #13 on: September 07, 2009, 03:02:34 AM »
"First thing Tuesday morning I am going to call my optometrist and schedule an appointment."  

An optometrist is good  only for checking visual problems.  You really need to see an ophthalmologist, who can check for diseases of the eye.  
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline confidentIwillbeOK

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Re: disclosure
« Reply #14 on: September 07, 2009, 10:56:32 AM »
 :-[   Just a typo....  LOL....I meant my opthamologist.....

Offline Basquo

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Re: disclosure
« Reply #15 on: September 07, 2009, 01:13:06 PM »
Egad! How irresponsible to incite hysteria! Please don't tell people that HIV directly causes blindness or makes our teeth fall out. It's simply UNTRUE!

Untreated HIV can lead to a compromised immune system [CD4 <200] and symptomatic AIDS, which may leave us vulnerable to opportunistic infections that can cause diseases of the eyes or mouth ... or elsewhere ... but that's the extent of it.

Dude, "diseases of the eye" can cause blindness.  I think that's pretty extensive, and I've seen it happen to people.

From the lessons on Opportunistic Infections:

Quote
Almost all gay/bisexual men are infected with CMV and more than 75% of all HIV-infected people carry the virus

Quote
Being infected with CMV is no reason to panic. CMV is only a threat when the immune system becomes damaged. If your CD4 cell count falls below 50, you're at a much greater risk of developing CMV disease, particularly CMV retinitis (discussed below). Anti-HIV therapies can help protect and repair the immune system. Additionally, preventive therapy (prophylaxis) is available to HIV-infected patients who are at risk of developing CMV disease.

and there are people walking around today who despite adherance cannot get their CD4 count to go above 35.

People do go blind and yes it is because of HIV.  If everyone's infected with CMV, why doesn't everyone go blind?

Quote
CMV Retinitis: CMV can cause damage to the back of the eye, or the retina. This can lead to blurred vision, blind spots or moving spots, and blindness. This is the most common type of CMV disease in people with HIV. While usually not life-threatening, problems seeing and blindness is usually permanent, even if treatment has been successful.

http://www.aidsmeds.com/articles/CMV_6768.shtml

Offline LTSurviver

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Re: disclosure
« Reply #16 on: September 07, 2009, 02:13:14 PM »
Hey guys, it is not normal to go to the car mechanic and tell them that the engine is running rough, but you cannot open the hood, because there are some secrets under there. 

Lying to the doctor, any doctor, that is going to deal with health issues in your body is only fooling yourself, and does you or the doctor no good.  Yes, for example, "Physics" tells us that it is OK to lie, and if you are going to the dentist or optometrist that there is no need to "disclose" your status.  Sorry guys, there are some side effects to HIV that can make you go blind in about two weeks.  HIV destroys teeth over time, and your dentist NEEDS to know your status to keep you in teeth for the duration of your life.

HIV is a life long diagnosis, and to keep it to yourself when with any doctor is screwing you, not them. 

Get over it, HIV is forever!

Talk about overkill...

I've been positive since 1987 and have NEVER disclosed my status to a dentist.  My teeth are in great shape.  I also never tell when I have to go to an urgent care for bronchitis or a sinus infection on weekends when my normal doc is busy or when out of town.  Why?  Because I know what's wrong with me is not an OI and disclosing only increases the odds of my status being outted in this backwards, midwest city.

Also, I know which antibiotics may interact poorly with my meds and simply tell the urgent care doc I'm not able to tolerate them.

If you have an ID doc and are seeing another doctor about an unrelated, non-OI illness or a dentist I see no reason to disclose if you're not comfortable with doing so.  Especially if you're going to follow up with your ID doc later.

Offline Puckslinger

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Re: disclosure
« Reply #17 on: September 07, 2009, 03:22:57 PM »
My two cents:

I have an eye exam every year to rule out any signs of CMV Retinitis. I have always been told by my AIDS doc that Cytomegalovirus Infection of the Retina in AIDS Patients is something people should be aware of and guard against. (MY AIDS doc has a practice on Castro Street in San Francisco and has seen it all. She has been practicing since the early 80s, and sees HIV/AIDS clients only. I travel over 200 miles every three months to see her because I value her expertise. She has made an enormous difference in my life; and I believe I would be dead if I had not found her.)

My eye doctor, who is local,  had a brother who died of AIDS related illness in the early 90s and he accepts MediCal (California's state source of Medicaid) from people who are HIV Positive. I don't thinks he accepts it from others; although I might be wrong about that. He does have a pretty swanky office though; and a very busy practice.

During my first exam, he noticed I had a detached retina. He said it was minor, and was probably the result of an old eye injury; but I was happy he caught it. I was told that any serious physical exertion on my part, that required excessive 'bearing down', could have exacerbated the tiny tear in the tissue, and  could have caused a severe problem.

It was repaired with laser surgery.

I agree with those who think that being honest with your medical providers is a good idea.
« Last Edit: September 07, 2009, 04:13:06 PM by Puckslinger »

Offline elf

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Re: disclosure
« Reply #18 on: September 07, 2009, 09:33:29 PM »
Only my I.D. and my G.P. know about my status.
I wouldn't tell it to my dentist since in my country there are only
700 HIV cases (out of 4 million people living here), so an HIVpositive
person is like a species from Mars for most people.  :-[

I would be rejected and feel ashamed because of my status.
All my friends that I told about my status left me.
I don't need more stress.
As long as I'm undetectable, and they use gloves, masks and plastic glasses,
I'm not infectious...
« Last Edit: September 07, 2009, 09:37:42 PM by elf »
Let's have a Kiki!

Offline RapidRod

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Re: disclosure
« Reply #19 on: September 07, 2009, 10:14:51 PM »
Yes HIV can cause vision issues. I have to go every year for a vision test. Just went last week. He also has a complete list of my medications.
« Last Edit: September 07, 2009, 10:17:31 PM by RapidRod »

Offline edfu

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Re: disclosure
« Reply #20 on: September 07, 2009, 11:47:34 PM »
Talk about overkill...

I've been positive since 1987 and have NEVER disclosed my status to a dentist.  My teeth are in great shape.  I also never tell when I have to go to an urgent care for bronchitis or a sinus infection on weekends when my normal doc is busy or when out of town.  Why?  Because I know what's wrong with me is not an OI and disclosing only increases the odds of my status being outted in this backwards, midwest city.

I do not know what backwards midwest city you live in, but we are discussing disclosure to a medical official, who is bound by the doctor-patient confidentiality relationship, not to a friend, acquaintance, or even family member. 

Your advice is extremely dangerous and should not be followed by anyone with common sense.  You are lucky in the extreme to still be alive, and you have admitted that your personal good fortune may be due to your own genetics.  Not everyone will be so fortunate--indeed, most will not.   If you're giving advice to HIV-positives, they ought to know your own history, which you have posted on this site back in January:

*You've been positive for 22 years.

*Your CD4 has been between 160-180 for over 20 years, with a VL of over 160,000, and you did not seek appropriate medical care for all of that time.  Your CD4 was never over 200 in all of that time.

*You never took antiretroviral medications until last November.

*You began to take medication then only because you were hospitalized and spent a week in ICU.  You had a fever of "unknown origin."  Your CD4 then was 128. 

Your teeth may be in great shape, but does your dentist know he should be checking for oral Kaposi's sarcoma?  You have admitted to choosing to completely ignore your HIV for over two decades, and now you claim to know what's an OI and what's not?  I don't think so. 

Your medical history is one that is very rare and is not applicable to the majority.  Most who would follow your advice would be very sorry indeed.  You have been able to defy in the extreme all recommended standard medical advice. 

I hope that you will be able to achieve undetectable viral load in peripheral blood and that you will be able to increase your CD4's to a more reasonable measurement.  Your baseline counts, length of infection without medication, and age will make this very difficult, however.  You should not be giving advice to others, however, to follow your path--or, rather, to the one you chose not to take.

Overkill indeed!     
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline David_CA

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Re: disclosure
« Reply #21 on: September 08, 2009, 08:51:26 AM »
One always has the option of lying. I know I've lied (by omission) on those forms before.  Not when it might be important, of course, but it's really of no consequence to my dentist or optometrist that I'm positive. I did tell a dentist once, who treated it as an opportunity to make a money grab by having me come in every three months.

Wrong, at least in terms of the optometrist; maybe I can get my optometrist friend to send me some specifics.  Also, some commonly prescribed drugs are contraindicated with HAART meds.  An individual who might be prescribing these needs to know what other meds you're on (if on meds).  I don't always disclose on the questionnaire forms, actually.  I do disclose to the Dr or PA in person.  I've been going to the same dentist for 25 years and didn't feel comfortable checking that item off on the form and handing it back in.  She thanked me for telling her and said that she understood why I didn't want to fill that out.  

I always try to remember that I'm really not unique.  My dentist sees a lot of patients, and I know that I'm not the first, or only, to find out I'm HIV+.  If it had been an issue for them, it wouldn't be for long, because I'd have gone elsewhere.  

(edited for a typo)
« Last Edit: September 08, 2009, 11:16:55 PM by David_NC »
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline confidentIwillbeOK

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Re: disclosure
« Reply #22 on: September 08, 2009, 10:50:02 PM »
Interesting timing.....great article posted today on poz.com entitled "Mouth Full of Problems: A Crisis in HIV Dental Care":

http://www.poz.com/articles/hiv_dental_oral_401_17224.shtml

 


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