A tricky Disclosure Question - Right or wrong thing to do, I'm in a quandry.

[Denver Toad]

I have to go in for a colonscopy tomorrow.  Dreading the prep part.

Has to be done, preventative medicine and all that, it's just routine. I'm overdue by a couple of years for the screening. Cancer runs in my family I'm unwise to delay any longer. Can't go to another GI unit as medical insurance dictates where the procedure is to be performed. Only one place in Colorado is available to me.

My wife works a nurse in the GI unit where the procedure is to be performed. She's one of about 20 or so on staff.

We've socialized with most all the folks she works with. Been out to dinner, hospital functions, homes yada yada. They all know me and they're a great bunch of folks.

They are however a gossipy bunch. Both guys and gals. There's no secrets in the unit. To the best of my knowledge no one knows about my poz status where wifey works. It's never come up, I've never shared, it's just been there in the background. Nothing to be gained or lost by disclosure.

My wife is off unit in another part of the hospital, won't be back on the floor for another two weeks. To be honest... she's in rehab for alcoholism. She goes back to work in two weeks and will have to answer questions from co-workers as to where she disappeared to for the last month. That in and of itself is stressful enough. Currently only her manager and supervisor know where she's at. The availability board lists her as "On FMLA" with a projected return date.

While I'm open as open can be with regards to my poz status, I don't announce it as part of daily life. If it comes up I deal with it when it happens. Until now I had a good set of internal guidelines how to best handle disclosure.

There's a portion of the pre-procedure paperwork for significant illness and medications to be listed. All my paperwork is filled out excepting this block. Part of me says skip it, while a colonscopy is invasive it's not like surgery or such. Part of me recognizes that I have an obligation to be honest. It feels like a no win situation here. I don't care if her coworkers know I'm poz, I just prefer to disclose in a setting, time, and place of my choosing. Not on admission paperwork and certainly not as part of the gossip network.

Just when I think I've got the whole disclosure thing wrapped up in a nice neat package... curve ball.

Would truly appreciate any words of advice. Thanks much.

Todd

[Ann]

Hi Todd,

How about a compromise? Leave the significant illness block blank, but disclose (orally) when you go in for the first appointment. This will give you a measure of control over who knows the information.

Ann

[Inchlingblue]

As I read your post it does sound like a bit of a quandary. I looked at some of your previous posts and you mention that you disclosed your status in The Rocky Mountain News and that you have been open about it in your community, isn't there a chance some of these people already know?

If they do know and you don't disclose that would be worse, wouldn't it?

[emeraldize]

check your PM

[rioz]

This circumstance is all too familiar to me and as I roam these boards, I realize, to many of us.

There is a thread regarding disclosure to your dentist and some people seem to be emotionally enthusiastic about their particular side of the fence.

I am bisexual, married and live in a rural area of upstate New York. Knowledge of my AIDS would be devastating to me and my family. I use an ID doctor in New York City however other care such as dental, general medical and eye care I do locally. I spoke to a local minister about my constant dilemma of weather or not to disclose and she immediately blurted out; "it's none of their business, they are supposed to use universal precautions." So before one camp starts flaming me, I just wish people would try to take other people's perspective. Sometimes there is no choice!

Best wishes for all,

Richard

[mecch]

Maybe dentists and protologists don't need to know because they use universal safety procedures.  However, there seems to be a point where you can privately tell the professional concerned and explain you don't want it on your charts.  If you are getting a clean bill of health, I could see never disclosing. But there is a hypothesis that really knowledgeable dentists and protologists and gastro and blah blah blah specialists could have knowledge of the special needs and dangers of being HIV+. Or the reverse.

I read all sorts of scarey things about how because I am HIV+ I have higher risks for anal cancer, etc., and in the privacy of the colonoscopy doc's office, he looked at my chart, my HAART treatment, my numbers, and put my mind quite at ease, after he had been up there and said it was perfectly fine....

see?

[CallMeSid]

There is nothing to be gained, but potentially much to be lost by disclosing.  If I were in your shoes, I would not disclose in writing or verbally to any member of this "gossipy" group.

I'm guessing it's not possible to cancel your appointment with this medical group and schedule it elsewhere?

Those commenters above who suggested disclosing verbally and requesting that it not be noted in the chart seem to have missed the "gossipy" description.

And now the hysterical know-it-all queens will start screaming any second now....

[mecch]

Any doctor worth his/her diploma is not going to gossip.  I could see it being an issue lying around a file or chart somwhere, however.  Just saying.

[rioz]

mecch,

I am not looking for a fight but....

How can you state with such certainty that a person or persons you do not know in a situation that has not yet occurred will act or react in a specific way???

I am obviously passionate about this issue because I live it almost every day! Do you live in a small community? Do you live in a small conservative / republican / god fearing / town? Do you hear vicious gossip from and or about friends, family and or neighbors? I thought we were here to give and receive support and maybe a little careful advise. Why cant people accept that there are millions of varieties of people and circumstances that are unique and worthy of their own special resolve?

Respectfully,

Richard

[rioz]

Any doctor worth his/her diploma is not going to gossip.  I could see it being an issue lying around a file or chart somwhere, however.  Just saying.

mecch,

I am not looking for a fight but....

How can you state with such certainty that a person or persons you do not know in a situation that has not yet occurred will act or react in a specific way???

I am obviously passionate about this issue because I live it almost every day! Do you live in a small community? Do you live in a small conservative / republican / god fearing / town? Do you hear vicious gossip from and or about friends, family and or neighbors? I thought we were here to give and receive support and maybe a little careful advise. Why cant people accept that there are millions of varieties of people and circumstances that are unique and worthy of their own special resolve?

Respectfully,

Richard
[/quote]

[mecch]

My advice is given with no disrespect to anyone for the situation they are living in. Its simply my observation and belief that most doctors take pretty seriously patient confidentiality. 
The poster will do what is best in his/her circumstances.  Several members posted the idea that an oral disclosure direct to the doctor is something to consider, and I agree.

[bocker3]

Whether or not to disclose is a very difficult decision.  However, disclosing to medical personnel is not really about whether or not Universal Precautions are in place (they should be), it is about insuring that you get the proper care.  In this case, I have an example from my own experience.

I had a colonoscopy 5 years ago, just before I tested positive.  No problems -- I certainly didn't disclose, as I didn't know.  However, when I go in next year, I will tell -- why?  Well, I always tell my medical providers, but this is besides the point.  The other, potentially life saving reason is, the sedative they gave me back in 2005 (sorry, I can't think of the name at the moment) is one that should never be administered to someone on some HIV meds, because the HIV meds intensify the effects of the sedative.
So... some folks may think that only "hysterical know-it-all queens" think withholding medical information is dangerous -- the fact is, when drugs are being administered, NOT TELLING can have serious, even deadly consequences.
Now, if you aren't on meds, do what you need to do.  However, if you are on meds, you need to, at a minimum, find out what they plan on giving you and checking it against your meds.  Of course, this approach still runs the risk that they end up having to give you something else that they should not (but don't know, because they don't have all your medical history).

Good Luck, with whatever you decide.

Hugs,
Mike

[mecch]

Colonoscopy these days does not necessarily require any sedation, by the way. I had nothing. Felt minor discomfort (the nurse pushing around my abdomen) and went for a long bike ride directly after.

[Denver Toad]

Thanks to ALL for your words, good advice from all.

Blue - Yeah I was in the Rocky Mtn News. I have yet to run into anyone that has ever mentioned the article.  

You ride Mech?? Me too, C-Dale CAAD9. Got it down to about 18 pounds. After I posted I went for a long ride and about froze my ass off.

It's amazing how a few miles can clear the head and make things so much clearer.

Sedation is mandatory for tomorrows procedure. I'm a wimp about these things so sedation is a good thing.  

I've decided before hand that I'd ask for a moment with the doctor in private before they sedate me and explain the situation. It will likely end up on the chart but it is what it is. I understood that there is uniqueness to the exam if HIV is involved but was stumped as how to approach it.

 

--Laughing at self--  

Also as a truly good co-dependent spouse I was worried about having too much on my wife's plate and was projecting my fears on the situation. Once I quit obsessing about the situation and it all became much clearer. I've got to do what is best for me, and I can't half truth the situation.
This recovery/co dependence is a whole new game for me. It's easier to be an obsessive controlling little shit then it is a lovingly detached spouse. I'm learning as I go and I've got a lot to learn.

In the end it wasn't my fear of disclosure... it was fear of the unknown. Now that I see it for what it is, I can just give it over and worry about what happens when and if it happens.

to make this a truly long post, a couple of words from Dave Barry regarding colonoscopies...

This is from newshound Dave Barry's colonoscopy journal:

    I called my friend Andy Sable, a gastroenterologist, to make an appointment for a colonoscopy.  A few days later, in his office, Andy showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis .  Then Andy explained the colonoscopy procedure to me in a thorough, reassuring and patient manner.  I nodded thoughtfully, but I didn't really hear anything he said, because my brain was shrieking, quote, 'HE'S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!' I left Andy's office with some written instructions, and a prescription for a product called 'MoviPrep,' which comes in a box large enough to hold a microwave oven.  I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America 's enemies. I spent the next several days productively sitting around being nervous.  Then, on the day before my colonoscopy, I began my  preparation.  In accordance with my instructions, I didn't eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor.  Then, in the evening, I took the MoviPrep.  You mix two packets of powder together in a one-liter plastic jug, then you fill it with lukewarm water.  (For those unfamiliar with the metric system, a liter is about 32 gallons.) Then you have to drink the whole jug.  This takes about an hour, because MoviPrep tastes - and here I am being kind - like a mixture of goat spit and urinal cleanser, with just a hint of lemon.
The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, 'a loose, watery bowel movement may result.'  This is kind of like saying that after you jump off your roof, you may experience contact with the ground.
MoviPrep is a nuclear laxative. I don't want to be too graphic, here, but:  Have you ever seen a space-shuttle launch?  This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt.  You spend several hours pretty much confined to the bathroom, spurting violently.  You eliminate everything.  And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet.
After an action-packed evening, I finally got to sleep.  The next morning my wife drove me to the clinic.  I was very nervous.  Not only was I worried about the procedure, but I had been experiencing occasional return bouts of MoviPrep spurtage.  I was thinking, 'What if I spurt on Andy?'  How do you apologize to a friend for something like that?  Flowers would not be enough.
At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the heck the forms said.  Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked.
Then a nurse named Eddie put a little needle in a vein in my left hand.  Ordinarily I would have fainted, but Eddie was very good, and I was already lying down.  Eddie also told me that some people put vodka in their MoviPrep.  At first I was ticked off that I hadn't thought of this is, but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom, so you were staggering around in full Fire Hose Mode.  You would have no choice but to burn your house.
When everything was ready, Eddie wheeled me into the procedure room, where Andy was waiting with a nurse and an anesthesiologist.  I did not see the 17,000-foot tube, but I knew Andy had it hidden around there somewhere.  I was seriously nervous at this point.  Andy had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand.  There was music playing in the room, and I realized that the song was 'Dancing Queen' by ABBA.  I remarked to Andy that, of all the songs that could be playing during this particular procedure, 'Dancing Queen' had to be the least appropriate.
'You want me to turn it up?' said Andy, from somewhere behind me. 'Ha ha,' I said.  And then it was time, the moment I had been dreading for more than a decade.  If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like.
I have no idea.  Really.  I slept through it.  One moment, ABBA was yelling 'Dancing Queen, feel the beat of the tambourine,' and the next moment, I was back in the other room, waking up in a very mellow mood.  Andy was looking down at me and asking me how I felt.  I felt excellent.  I felt even more excellent when Andy told me that It was all over, and that my colon had passed with flying colors.  I have never been prouder of an internal organ.

[rioz]

Whether or not to disclose is a very difficult decision.  However, disclosing to medical personnel is not really about whether or not Universal Precautions are in place (they should be), it is about insuring that you get the proper care.


     FOR YOU!

     Unfortunately for some of us, disclosure is as much about confidentially as proper care.

     Again, if you do not live in a small conservative community or you do not "fit" the stereotypical genre                                                             of HIV AIDS, you do not have any notion of the circumstance.

     OR if any of a billion other dynamics might be at play no one can speak for anyone else.

     I am just looking for an "Amen".

Best wishes to all,

Richard

     
     

[rioz]

Whether or not to disclose is a very difficult decision.  However, disclosing to medical personnel is not really about whether or not Universal Precautions are in place (they should be), it is about insuring that you get the proper care.


     FOR YOU!

     Unfortunately for some of us, disclosure is as much about confidentially as proper care.

     Again, if you do not live in a small conservative community or you do not "fit" the stereotypical genre                                                             of HIV AIDS, you do not have any notion of the circumstance.

     OR if any of a billion other dynamics might be at play no one can speak for anyone else.

     I am just looking for an "Amen".

Best wishes to all,

Richard

     
     

[rioz]

How the hell do I use the quote feature??

[Ann]

Hi again, Todd.

That Barry guy is a hoot. Who the hell is he?

I had a feeling earlier that part of the problem had to do with you worrying about the wife. I think you made the right decision in deciding to do what's right for you. I hear you on the co-dependency thing; been there, done that, got the matching t-shirt.

Good luck with the whole package - the prep, the disclosure and the proceedure. Hope all of it goes well.

Are you going to put some vodka in your nuclear laxative?

(((((Todd)))))

Ann

[Ann]

How the hell do I use the quote feature??

Rioz,

After you hit quote, look at the posting box. You'll see the quoted post surrounded by some formatting. Look at where the text ends. You'll see (without the spaces) [ / quote ]. Make sure what YOU want to say is written AFTER that formatting. Otherwise, what you type will show in the quote box instead of outside it.

And by the way, I live in a tiny community on a small island with a population of only 70-odd thousand. It's a very conservative place and no, I'm not your stereotypical poz either. But you know what? I've been pleasantly surprised by how much people don't actually care about my status. And you know what else? The ONLY poz people here who DO get gossiped about are the ones who try to hide their status. Those of us who are open about our status are accepted and respected. Just something for you to think about.

Ann

[Grinch]

I would strongly urge you to at a minimum tell the physician what meds you are on.  Many HIV meds are contraindicated with Versed.  This is often given with this type of procedure.

Quite simply Versed and some HIV meds can be fatal.  Docs love the drug but what they don't know can certainly hurt you.  This doesn't mean you have to tell the nurses and techs.

[rioz]

Hi Ann,

Thanks for the "quote" lesson.

I have taken note of your experience and I will think about it.

Thank you again.

Best wishes to all,

Richard

[bocker3]

Whether or not to disclose is a very difficult decision.  However, disclosing to medical personnel is not really about whether or not Universal Precautions are in place (they should be), it is about insuring that you get the proper care.


     FOR YOU!

     Unfortunately for some of us, disclosure is as much about confidentially as proper care.

     Again, if you do not live in a small conservative community or you do not "fit" the stereotypical genre                                                             of HIV AIDS, you do not have any notion of the circumstance.

     OR if any of a billion other dynamics might be at play no one can speak for anyone else.

     I am just looking for an "Amen".

Best wishes to all,

Richard

I'm not quite sure what the "FOR YOU" is about.  Insuring that you don't get drugs that could cause you harm has nothing to do with where you live or "who" you are (do you really think it's "easier" for a gay man to disclose???).  Quite frankly, it is about whether or not silence causes you physical harm or death.

Now, I KNOW that everyone's circumstances are different and this has to come into play around disclosure, but when your silence can cause you to be given potentially dangerous drugs, the fear has to be put into the proper place. 

Mike

Oh, and I remember the name of that sedative I had that I can't have now -- Versed.  It was a great drug!

[Basquo]

Oh, and I remember the name of that sedative I had that I can't have now -- Versed.  It was a great drug!

Versed is counterindicated for HIV drugs?  Really? Wow--they give it to everyone at my hospital.

DenverToad, HIPAA laws are even more stringent with the HITECH Breach Notification Rule that went into effect 9/23 or so. Healthcare workers can get fined personally--not just their employers--for wrongful disclosure.  And the word is (word only--can't back this up) that patients whose info has wrongfully been disclosed could potentially get a portion of the fine paid to them. So start taking notes if you think tongues are wagging.  Happy scoping! (been there, done that, due for another one next Spring...)

[bocker3]

Versed is counterindicated for HIV drugs?  Really? Wow--they give it to everyone at my hospital.

Hey Creighton,

I haven't looked at ALL HIV meds, but of mine, Versed is contraindicated because of the Efavirenz in Atripla, as well as Reyataz and Norvir.

Mike

[David_CA]

Hey Creighton,

I haven't looked at ALL HIV meds, but of mine, Versed is contraindicated because of the Efavirenz in Atripla, as well as Reyataz and Norvir.

Mike

Yeah, I remember that from researching meds back before I even started 'em.  It sucks, too, because Versed is such a pleasant drug!  I had it prior to a bronchoscopy the day before I started meds when I was in the hospital.  I remember waking up after 'the procedure' in my room and lunch was waiting for me (very good food there, BTW).  I stretched a bit, marveled at how good I felt, and ate lunch.  Between the O2 and the Versed, I was definitely feeling no pain!

 

[Lou-ah-vull]

I had to "battle" the colonoscopy staff last year over the Versed--to the point of delaying my procedure by about 45 minutes.  Finally, the doctor came in and asked why there was such a ruckus.  I had him read the information of the contraindication, and he was immediately convinced I was right.  You get general anesthesia--and it works just as well, in fact, in my case I recovered more quickly than most other patients.  The big problem is versed with sustiva as the others have reported.  It pays to check the contraindications on your meds, you cannot ever be certain the staff is careful enough about this.

Gary

[hotpuppy]

They are however a gossipy bunch. Both guys and gals. There's no secrets in the unit. To the best of my knowledge no one knows about my poz status where wifey works. It's never come up, I've never shared, it's just been there in the background. Nothing to be gained or lost by disclosure.

HIPAA - words that strike fear in every hospital.  I would have a polite conversation with your doctor and explain that you expect your confidential health information to stay that way.  Explain that you expect gossip to be minimal and would appreciate his advice in the matter.  It may help to also have the same conversation with the unit supervisor.  After all, they are professionals and it's not unreasonable to expect them to maintain patient privacy.

[hotpuppy]

Nothing like participating in your own care.... the life you save may be your very own!

I had to "battle" the colonoscopy staff last year over the Versed--to the point of delaying my procedure by about 45 minutes.  Finally, the doctor came in and asked why there was such a ruckus.  I had him read the information of the contraindication, and he was immediately convinced I was right.  You get general anesthesia--and it works just as well, in fact, in my case I recovered more quickly than most other patients.  The big problem is versed with sustiva as the others have reported.  It pays to check the contraindications on your meds, you cannot ever be certain the staff is careful enough about this.