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Author Topic: Trying to balance the Doctor patient relationship.  (Read 2976 times)

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Offline buginme2

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Trying to balance the Doctor patient relationship.
« on: November 07, 2011, 04:00:43 PM »
I have a couple questions about how often everyone see's their doctor, how long your appointments are, and how in-depth you feel your appointments are.

I have been going to my HIV doc for a about a year now.  I am very comfortable with his knowledge about HIV and his resume' is quite impressive.

My issue is that sometimes I feel like our appointments are a little bit rushed.  I have learned that you make your appointments first thing in the morning because if you have a late appointment it is possible that he could be running very late.  Even so, sometime I feel like he comes in, goes over my recent labs, and says "your doing great, see you next time."  I have brought up a couple of concerns I have and feel like he has brushed them off as not being serious (now maybe they are not serious issues, I get that. It could just be that he doesn't explain that to me).  Our appointments now are about 15-20 minutes. 

At our last appointment he told me that I didn't need to come back for 6 months.  I am on HAART, undetectable, my cd4 is above 500 and all other blood tests are normal (except my cholesterol is a little high, about 225).  I don't want to be a nervous nelly but I am a little nervous about having such a large amount of time between appointments. 

So my question is, what is appropriate.  How long are your appointments? How often do you really need to go?

Also, this may be a anxiety thing but I wonder what "concerning signs" I should be on the lookout for to prompt me to go into the doctor before my next appointment. 

Thanks for listening.

Offline Miss Philicia

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Re: Trying to balance the Doctor patient relationship.
« Reply #1 on: November 07, 2011, 04:14:34 PM »
Honestly what you're describing doesn't sound unusual to me. My appointments are rather quick. As a patient that didn't get my viral load undetectable for a period of 13 years on meds, there's a very large difference once you are undetectable and stable in terms of HIV specialist appointments.

The only thing that raises and eyebrow is your comment about "a couple of concerns" but combined with your sense of anxiety expressed in your closing sentences it may be safe to assume that whatever the concern was he dismissed in a rational way as something that wasn't important. That's simply how it often is for people.

And yes, the six months routine is becoming more and more standard for stable patients. I'd be going six months instead of ever four if I wasn't at the HIV clinic where I am, because of funding issues they stipulate a minimum of four months. My doctor has actually apologized to me and said if he had his way (and he's the director of the clinic) I'd be a patient that could just come every six months. This isn't at all unusual.
"I’ve slept with enough men to know that I’m not gay"

Offline newt

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Re: Trying to balance the Doctor patient relationship.
« Reply #2 on: November 07, 2011, 04:36:54 PM »
Make a list of Qs and send it in advance

- matt
"The object is to be a well patient, not a good patient"

Offline skeebo1969

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Re: Trying to balance the Doctor patient relationship.
« Reply #3 on: November 07, 2011, 04:48:09 PM »

  My last doctor was a lot like you describe, and what I found most troubling at times was that my wife and I were his only patients who did not seem wheel chair bound.  He rushed them out much like he rushed us out and when I had concerns he simply brushed them aside as not important.

  If it hadn't been for great numbers and a constant undetectable viral load from both my wife and I, I would have probably raised a stink about it.   He eventually advised us to find a GP and we did.

  The added bonus about the doctor I now have is that she is also a family doctor.  I've only had one appointment with her and get my lab results from that appointment this week.  She's very thourough from what I can tell and our appointment took about 2 hours for the two of us together.  This, of course, was our initial appointment with her.

  Back to my last doctor, he was the only one in the county so he had a very heavy caseload.  This can be a problem sometimes.
I despise the song Love is in the Air, you should too.

Offline mecch

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Re: Trying to balance the Doctor patient relationship.
« Reply #4 on: November 07, 2011, 05:09:25 PM »
I am sure the time with patient is quite variable depending on doctor's style, patient's need, time and month of appt, location, country, etc.

I have a very specific question I will ask you.  I ask myself the same things, sometimes.

You say you have faith in the doc's knowledge and he's got career cred.

So, let's start with the global, overall fear - if the doc thinks you need such and such amt of time and depth in a visit, why do you feel like want or need more?  

Do you think you are sick, and/or need more attention? What if the doc really knows all things are fine, you have the "chronic manageable" HIV infection and many visits (4x a year? 3x a year? now 2x a year proposed) you don't need that much attention.  The assumption is that if something does come up, you call and he/she sees you.  But otherwise, all systems are go from his/her domain so you don't need more of his/her time.   Can you let this fear go, and believe that the care you are getting is enough, watchful, and expert, etc. Even if its less than a hour a year, plus complete labs, when all "systems are go", isn't this enough.

Moving to the micro level - yes, if you feel like certain questions to the doc are rushed through, then your only option is to express this feeling and see what response you get.

My first year of seroconversion, my ID was a big-deal in his domaine but really a bit "on the clock" - he would ration out the number of questions he would field from me, "in depth" but also try to run through anything I had on the list by saying "not a concern" "ok we can look into that" "save that for next time its not a priority" etc etc.  I would say in the end he mostly did it all expertly.

But finally I did feel like he skipped over two questions I brought him.  First time, he didn't react quickly enough when I started complaining about sustiva crazies.  Later, after my HAART was successfully switched, I told him it was a telephone conversations, and more than one visit, and an insistance he communicate with my shrink,  that I expressed concerns, and I thought he had dropped the ball.  Took too long.  

He apologized.  He said he would try not to let that happen again.   A couple of years later, a year ago in fact, I thought I was getting really puffy, heavy, and I brought this up 2x with him and the 2nd time, he measured me, weighed me, and said, this has nothing to do with my domaine and futhermore you are not obese so I can't send you to a nutritionist, physio, etc etc.  In other words, he didn't want anything to do with that.  

After he disengage, I went to a new ID doc in another city, and his attitude was totally different.  Though I wouldn't say he spends more time on the clock with me, he did take the weight gain very seriously and used his prestige and power to get me some insurance covered professional support to help me lose that weight.  He said I had to regain my normal lifelong slim body frame and it was more pressing an issue than my HIV infection.   Yes, read that again.  I other words, a specialist who took a moment to deal with something arguably in his domain, or not.  Doctor treating the whole person, in other words.

The vast majority of doctors have very limited time to spend with any one patient.  Its a juggling act to find the mix that assures you but doesn't indulge unfounded anxiety.

If we were stinking rich, we could get a doc to spend an hour with us, or half a day, whatever.   But remember, Michael Jackson could get a private live-in doc, but what an ass-hat doc.

The key is to find the doc who is so clever and professional that he/she spends exactly the right amount of time and attention to keep you healthy while also sustaining his own career.

One of the "health professionals" i have most respected in my life isn't a doc, but a sports massage therapist.  This guy is a wizard!  He will work out any kink and see me just the amt of time to put me back in shape - 1 session, 2, maybe once in 10 years, 3.  Then out the door and don't waste his time because in his practice method, I've been fixed, I don't need more, and there are plenty of other people who do need his care.

« Last Edit: November 07, 2011, 05:28:38 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline eric48

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Re: Trying to balance the Doctor patient relationship.
« Reply #5 on: November 07, 2011, 05:57:04 PM »
.... and says "your doing great, see you next time." 

Recently I was at our most renowned local HIV-specialized neurologist.

I was initially diagnosed with moderated signs of neuropathy, I have been given B12 for a while and the nerve pain has disappeared.

They ran the test again and concluded that I do not have neuropathy. Basically he was saying:
 "your doing great, there is no need for a next time."

Since I suffer from brain fog and leg muscle twitching (24/24;7/7 for 16 months!), I ventured into whether I have (or not) any other nerve issues.

He quite firmly waived me off , repeating: you are doing fine and do not have any neurological problems.

To make is point clear he added:

you have no idea how many HIVers coming to this office would LOVE to hear what I have just told you:

your doing great ; period!

Sometimes, someone has to help the patient put things in perspective.

Even if this may hurt his/her feelings a bit

Cheers!

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0

Offline eric48

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Re: Trying to balance the Doctor patient relationship.
« Reply #6 on: November 07, 2011, 06:13:23 PM »
Make a list of Qs and send it in advance

- matt


Agreed. I have tried that one:

Make a list of Qs , print in duplicate (one to hand over to doc at beg. of interview and one for myself - as we are seating accross a table)

Somehow it works fine, and helps not forget anything, but I found I need to tune the procedure

Make a list of Qs (and share with doc)
+
Make a list of thoughts/concerns that you may want to keep for yourself
+
Checklist to make sure that critical questions have been answered (especially Rx...)

Rollover unanswered questions for the next visit. No stone left unturned.

Seems to be an efficient way to do, but kind of ruin the relationship too.

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0

Offline GSOgymrat

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Re: Trying to balance the Doctor patient relationship.
« Reply #7 on: November 07, 2011, 06:54:39 PM »
I've been to my doctor for around 15 years and see him every 6 months. There is nothing I feel I can't talk to him about. We usually talk for about 30 minutes, which is much longer than necessary, because we always seem to hit on some topic we both want to discuss. He is a primary care physician, not an ID doctor, but has a lot of HIV+ patients. He always tells me his latest off-color joke.

Offline hope_for_a_cure

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Re: Trying to balance the Doctor patient relationship.
« Reply #8 on: November 07, 2011, 07:17:41 PM »
I was very pleased with the ID Specialist I initially saw when I started treatment in March of 2010.  This new one that has been assigned to me at the ASO did not exactly get off on a great start with me.  

My appointments are quarterly and the time I spend with the doctor is usually 20 minutes give or take a few.  I would expect that with continued improvement in numbers a recommendation to at least go 3 times a year would be forthcoming. Twice a year would be great!  

Offline mikeyb39

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Re: Trying to balance the Doctor patient relationship.
« Reply #9 on: November 07, 2011, 07:47:17 PM »
he tells me to come in every 3 to 4 months, but if need anything in the meantime to come in and i usually don't hesitate to make a visit if i feel i need.   i've been going to him for about 12 years so we know each other very well.

my appointments usually last about 30mins, he calls me on the phone to give me the results when they come in.  we may even see the same doc bug, i think you are here in Dallas as well.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD

Offline buginme2

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Re: Trying to balance the Doctor patient relationship.
« Reply #10 on: November 07, 2011, 08:12:08 PM »
Thanks everyone for the responses. 

After thinking about this some more I think that possibly my issue has to do with comparing my current doctor to that of my primary care doctor (pre-HIV).  Pre-HIV I had a great doctor who spent a lot of time explaining things, asking questions, in a very office like relaxed setting.

Post-HIV, my primary doc referred me to my current doc who is an expert in HIV and HIV related cancers and is part of a large hospital / research center.  I often times see a student doctor along with my attending doctor. 

Its just a very different dynamic to what I had experienced previously.  Hope that makes sense.

>>hey Mikey..no not in Dallas (in seattle)

 

Offline surf18

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Re: Trying to balance the Doctor patient relationship.
« Reply #11 on: November 07, 2011, 08:33:19 PM »
last year my first year into this i had tons of questions and thoughts at my appoitments. i to felt rushed and complained about it, so he told me to book the appoitment under physical even though i was not getting a physical but they would block him more time to meet with me. i also have my labs sent to me ahead of the follow up appoitment so i can review them and make a list of questions i might have for the appoitment. he also gave me his email address where i can shoot a quick thought or question any time and get an answer. that seems to have worked out really well.

Offline tednlou2

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Re: Trying to balance the Doctor patient relationship.
« Reply #12 on: November 08, 2011, 03:09:29 AM »
I, too, feel rushed.  My doc only works at the HIV clinic on Monday afternoons.  I think he must be booked full.  He will often forget to give me my lab results.  He will leave the room and I think he is coming back.  But, he isn't.  I will have to get my labs printed off to see what they are. 

Every time I see him, he acts like it is the first time we've met---even though I've been seeing him since January 2009.  He will often say my meds are working well.  I'll have to remind him that I'm not on meds yet.  My vl of 10-20k should be a big red flag, if he thinks I'm on meds.  The other thing is that he almost always says, "Based on your labs, you must have been recently infected."  He will say this in front of my partner and without my asking.  I can only imagine the problems such statements cause with other patients and their partners/spouses.  He should know better that you can't look at someones labs and say they must have been recently infected.  If he would stop trying to tell me how long I've been infected, he would have time to give me my labs..lol. 

I'm glad you feel comfortable with your doc's knowledge and the only issue is feeling rushed.  With a good rapport, you could talk to him that you feel rushed.  I was going to talk to mine and tell him I would like for him to give me my labs at the beginning, discuss the labs, and then do the regular physical exam and ask if I have any concerns.  Because, I always feel like things are so chaotic and rushed.  The nurse will come in while we're talking wanting to give me a vaccination or because they forgot to get my blood pressure and then he gets off track.       

Offline mecch

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Re: Trying to balance the Doctor patient relationship.
« Reply #13 on: November 08, 2011, 04:21:20 AM »


I, too, feel rushed.  My doc only works at the HIV clinic on Monday afternoons.  I think he must be booked full.  He will often forget to give me my lab results.  He will leave the room and I think he is coming back.  But, he isn't.  I will have to get my labs printed off to see what they are. 

Every time I see him, he acts like it is the first time we've met---even though I've been seeing him since January 2009.  He will often say my meds are working well.  I'll have to remind him that I'm not on meds yet.  My vl of 10-20k should be a big red flag, if he thinks I'm on meds.  The other thing is that he almost always says, "Based on your labs, you must have been recently infected."  He will say this in front of my partner and without my asking.  I can only imagine the problems such statements cause with other patients and their partners/spouses.  He should know better that you can't look at someones labs and say they must have been recently infected.  If he would stop trying to tell me how long I've been infected, he would have time to give me my labs..lol. 

I'm glad you feel comfortable with your doc's knowledge and the only issue is feeling rushed.  With a good rapport, you could talk to him that you feel rushed.  I was going to talk to mine and tell him I would like for him to give me my labs at the beginning, discuss the labs, and then do the regular physical exam and ask if I have any concerns.  Because, I always feel like things are so chaotic and rushed.  The nurse will come in while we're talking wanting to give me a vaccination or because they forgot to get my blood pressure and then he gets off track.       


You're doctor sounds like he's incompetent! And unprofessional to boot.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Theyer

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Re: Trying to balance the Doctor patient relationship.
« Reply #14 on: November 08, 2011, 05:01:26 AM »

You're doctor sounds like he's incompetent! And unprofessional to boot.

Agree.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Growler

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Re: Trying to balance the Doctor patient relationship.
« Reply #15 on: November 08, 2011, 05:08:14 AM »
I was diagnosed in Dec 09 and underwent my first proper HIV assessment last month. The first words out of my mouth after the HIV Doctor introduced herself were, " It's only fair that I warn you now, I don't do sick and I don't do doctors." It all went down hill rapidly after that. The awkwardness of the situation was only affirmed when she asked to examine the family jewels; my first time naked in front of a woman....note to self, REMOVE PA before attending next assessment!

Issues arose and I was passed over to the immunology team for further consultation, and I have to say I failed to ingratiate myself with them either.... do we see a pattern emerging here folks?

Make no mistake I do understand this is entirely my issue, not there's. The service that the HIV team have thus far provided has been exemplary; I just DO NOT want it. That said the alternative, lying in a cigar box covered in licorice , isn't that appealing either.

So the moral of this story is..... GROWLER is just going to have to learn some humility, understand that he doesn't know everything and stop being such a passive-aggressive BITCH or invest in a generous funeral plan (and I hate to spend money I don't have).

GROWLER (who reminds passengers to please fasten their seat belts, because we're in for a fucking bumpy ride!)
“If loving someone is putting them in a straitjacket and kicking them down a flight of stairs, then yes, I have loved a few people.”

Offline jkinatl2

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Re: Trying to balance the Doctor patient relationship.
« Reply #16 on: November 08, 2011, 05:51:22 AM »
I'm not at all thrilled with my current physician. I get seen at a practice by a Physician's Assistant, who often mixes up orders, has pharmacy orders taken and dispensed at the wrong place, and in general is in over his head where my personal treatment is concerned.  Were it not for my own sleuthing, I would be in dangerous waters.

But I need him. I need his signature on forms which show I see a doctor, those forms also allow me other benefits and keep pesky beaurocrats at bay. And sadly, the number of clinics that take medicare cases has dwindled to nearly zero. It's this guy or public health, and I gave them a go years back, and they almost killed me in return.

It's HARD to find a good fit in a physician. THAT (among other reasons) is why its IMPERATIVE that we investigate our own health and know this virus - and it's treatments - inside and out. The learning curve is steep, I grant you. But it's your health, your life.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline hope_for_a_cure

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Re: Trying to balance the Doctor patient relationship.
« Reply #17 on: November 08, 2011, 06:13:00 AM »
But I need him.

It's HARD to find a good fit in a physician. THAT (among other reasons) is why its IMPERATIVE that we investigate our own health and know this virus - and it's treatments - inside and out. The learning curve is steep, I grant you. But it's your health, your life.


I feel the same way about this new one that I have.  I need my prescription for Atripla.  

He was quizzing me the day we met about sexual contact, he asked if I had performed oral sex on another man during the interrogation too.  That in and of itself caused me to raise a flag about this guy.  His statement to me about my HIV being "out of control" with a VL of 30 and CD4 count in the 270s shocked me to say the least.  He graduated medical school 5 years ago, and the feeling I got is that while he is indeed an ID Specialist, his main focus is NOT the treatment of HIV.  I also got the feeling this guy is a bit homophobic due to his tone during the inquisition that took place in the room.  He is an arrogant jerk to put it mildly and in my opinion has not obtained justifiable basis to be such.  

It will be interesting to see him in January when he sees that my CD4 count has climbed to 473 along with a VL reading of less than 20.  Its great we have an ASO here but I truly believe the doctors that spend their Fridays there would really prefer to be back in their private offices where they can rake in much more money for services rendered.
« Last Edit: November 08, 2011, 06:14:47 AM by hope_for_a_cure »

Offline buginme2

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Re: Trying to balance the Doctor patient relationship.
« Reply #18 on: November 08, 2011, 09:56:19 AM »
Ok after reading some of the other posts I don't feel so bad anymore.

Thanks, I needed that.

Offline mecch

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Re: Trying to balance the Doctor patient relationship.
« Reply #19 on: November 08, 2011, 10:40:51 AM »
I was diagnosed in Dec 09 and underwent my first proper HIV assessment last month. The first words out of my mouth after the HIV Doctor introduced herself were, " It's only fair that I warn you now, I don't do sick and I don't do doctors." It all went down hill rapidly after that. The awkwardness of the situation was only affirmed when she asked to examine the family jewels; my first time naked in front of a woman....note to self, REMOVE PA before attending next assessment!

Was there a reason she needed to see your junk?  !!!
Good for you for keeping in your PA, however.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: Trying to balance the Doctor patient relationship.
« Reply #20 on: November 08, 2011, 10:43:03 AM »

He was quizzing me the day we met about sexual contact, he asked if I had performed oral sex on another man during the interrogation too.  That in and of itself caused me to raise a flag about this guy.  His statement to me about my HIV being "out of control" with a VL of 30 and CD4 count in the 270s shocked me to say the least.  He graduated medical school 5 years ago, and the feeling I got is that while he is indeed an ID Specialist, his main focus is NOT the treatment of HIV.  I also got the feeling this guy is a bit homophobic due to his tone during the inquisition that took place in the room.  He is an arrogant jerk to put it mildly and in my opinion has not obtained justifiable basis to be such.  

Sorry to hear about this jerk, and others described in this thread.  THose of us who have decent docs should count our blessings I guess.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline statichope

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Re: Trying to balance the Doctor patient relationship.
« Reply #21 on: November 08, 2011, 10:46:03 AM »
I am going through the same thing bug. I started seeing my ID around October of last year, 1 month after being diagnosed. While he is 1 of the best if not the best in the area (per the internet, other people and sites), other doctors will go to him if they have questions. From the time I enter his office, it will be roughly 30mins and I am walking out to my car. He walks in, goes over my labs, will answer any questions I have BUT if his phone rings, he will ask me to hold on and will answer it lol. Questions or concerns I ask or have are usually shot down as not too important and that because I have HIV I will have aches and pains that will come and go on their own because of the virus and the medication and unless its bad not too worry about it.

I have read that some people upon seeing their ID for the first time will have a wellness check up or a full exam, I did not and when I brought it up he blew it off and said you seem to be doing fine. Now I feel good and fine and I am not losing weight anymore and my numbers are doing awesome, I have never had that full exam to say you need to have this  or that checked. Some say my ID should do this and some say I need to find a pcp to cover this (last time I went to the pcp I had last they found out I was positive and although I was in there for a crazy infected ingrown finger nail, they questioned me about my current medication and the dosage and verified that I was on medications with me 12 times in that single 15min visit, so I dropped them and do not have 1 now). I asked my ID about getting checked for HPV and anal cancers and he gave me the number to a place that would cover that...

So I have no idea, although after reading the other replies I guess this is something that is becoming more and more common and is to be expected. I guess I was just expecting...more lol

Offline mecch

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Re: Trying to balance the Doctor patient relationship.
« Reply #22 on: November 08, 2011, 10:57:12 AM »
Having HIV is not at all one stop service. 
One of the things I did was ask doctors to call each other if I had an issue and was seeing more than on doc.  Shrink calls GP calls ID, calls the specialist doctor etc.
They really don't offer to do this (my new ID does, in fact, but that the exception). But I have had positive results getting them to talk to each other.  Sometimes just saying they will send the papers, tests, notes along - sometimes that is not enough. 

About the doc answering phone calls while in consultation.  Well i am American and was surprised that most Swiss doctors to this - they answer calls!  It bugged me for awhile, got my back up, but when in Rome...  I just figured its the way they do their load of work these days and part of the culture in this country.

I wonder if this is happening more and more in many countries.  In the 80's I never remember a New York doctor answering a call while he/she was with me.  Never.  Maybe the times are changing.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline buginme2

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Re: Trying to balance the Doctor patient relationship.
« Reply #23 on: November 08, 2011, 11:50:38 AM »
Having HIV is not at all one stop service. 


It is for me, I only have one doctor.  My HIV doctor IS my Primary care doctor as well.

Offline mecch

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Re: Trying to balance the Doctor patient relationship.
« Reply #24 on: November 08, 2011, 11:57:50 AM »
IS that your choice or does your insurance/finances/country force that upon you?

I wouldn't feel comfortable either if the ONLY doc I saw was an all in one doc, 2x a year, for 15 minutes each time.  Doesn't seem like enough, then.  I see your anxiety!
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Miss Philicia

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Re: Trying to balance the Doctor patient relationship.
« Reply #25 on: November 08, 2011, 12:10:41 PM »
I've had four HIV specialists over the last 20 years, and I've not had these experiences you guys are describing by and laarge -- maybe you folks are just bad, overly anxious, high maintenance patients.

Food for thought at any rate

disclaimer: though no doubt there are some lackluster physicians floating around in the world, but this thread gives the impression that 90% of them are like this.
"I’ve slept with enough men to know that I’m not gay"

Offline jkinatl2

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Re: Trying to balance the Doctor patient relationship.
« Reply #26 on: November 08, 2011, 01:11:33 PM »
I've had four HIV specialists over the last 20 years, and I've not had these experiences you guys are describing by and laarge -- maybe you folks are just bad, overly anxious, high maintenance patients.

Food for thought at any rate

disclaimer: though no doubt there are some lackluster physicians floating around in the world, but this thread gives the impression that 90% of them are like this.

Well, I can't speak for others' experiences. I really don't think I've been a bad patient in that sense. Non-compliant sometimes, six months between appointments when I ought to have gone monthly, maybe.

Thing is, my experience in Atlanta has been a deteriorating one. Especially in the last ten or so years. Seems that fewer and fewer doctors/clinics take medicare patients - and those who DO, often have to schedule three or four patients at the same time in order to make ends meet.

I've experienced several doctors who simply quit practicing because of this.  A cople went into teaching, one is now a researcher for AMFAR. And a few simply left the HIV medicine field altogether.

Here in Atlanta I notice that there has been a real demographic change in HIV care, at least within the city - and at least within the medicare/medicaid/Ryan White population. There indeed ARE high maintenance patients in the clinics I've visited. It's not at all unusual to see police leading people out of the clinic, struggling and screaming for Oxycontin.

The Face Of AIDS has changed dramatically since my infection in 1993. And those of us in poverty find ourselves struggling to be heard, to receive adequate care. It behooves those of us (especially those of us in that situation) to be as well informed as we possibly can - because very often doctors (or in my case, physician's assistants) take the path of least resistance to care - which is NOT necessarily in my best interest.

Over the years I HAVE insisted on drugs other than the ones prescribed, to avoid lipo issues and  other common side effects. I HAVE had to fire a doctor who refused to believe that Sustiva was causing me suicidal thoughts, and who wanted to treat me with high doses of Welbutrin. In the past, I have staggered into a doctor's office (Grady IDC in Atlanta) with classic neurosyphilis, only to be told that I needed a backrub (seriously) and given a cursory inspection by an EENT specialist who had decided that I was a crystal meth addict, sight unseen.

I think it's wonderful, and remarkable that you have received consistent quality care during your tenure as an HIV patient. Please know that this is not always the case. There certainly ARE great doctors out there. There are also rotten ones, sometimes criminally so.

And sadly, when one's insurance and income dictates the clinic/physician, and the physician's ability to provide care is dictated by the ability to see a certain quantity of patients, the quality of care can and does suffer.

I have had about a dozen doctors in eight different clinics in the metro Atlanta area since 1993. Four have quit the practice, one actually made a move on me (back when I was hot), one tried to pray away my illness, and others were simply not equipped to handle the issues that arise from advanced HIV disease. I really had NO intention of knowing what I know about HIV and it's treatment - I'm remarkably intellectually lazy in that regard. I had to BECOME knowledgeable regarding at least MY illness and MY treatments - because I had to, and have to, be my own most strident advocate for treatment.

I can tell you, it's sometimes very depressing, crushing even, to feel neglected when I seek help. When I'm sick I am usually pretty weak, and not at all thinking as clearly and rationally as I'd like. And sadly, it is THOSE occasions when I am most likely to receive lackluster treatment.

I think the takeaway here is that it behooves ALL of us to know as much as we can in order to advocate for our own treatment and be an ACTIVE participant in the doctor-patient relationship. It is only by building these strong relationships (and letting the doctors know that we are not passive) when we are healthy that we stand a chance of thriving (or in some cases, surviving) despite system of healthcare that has significantly deteriorated in my own limited experience.



"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Growler

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Re: Trying to balance the Doctor patient relationship.
« Reply #27 on: November 08, 2011, 01:24:07 PM »
Was there a reason she needed to see your junk?  !!!
Good for you for keeping in your PA, however.
Visual examination for the sexual health screening or she like's to compare clients...I'm not sure which.
The PA will be with me forever. Gauge 0, so even if I take it out, that baby's never closing.

GROWLER
“If loving someone is putting them in a straitjacket and kicking them down a flight of stairs, then yes, I have loved a few people.”

Offline buginme2

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Re: Trying to balance the Doctor patient relationship.
« Reply #28 on: November 08, 2011, 01:26:10 PM »
Okay everyone, I appologize for the post.  Really I just felt a bit rushed when I saw my doctor.  I havent experienced anything like what some others have described.  

Mech, I'm not limited by any outside force.  I have private insurance, live in the US, and fiances are not the issue.  My doctors practice is just very high volume with a lot of complex cases.  My doctor actually specializes in HIV related cancer, so sometimes I have to wait to see him or my appointments are cut short because others have more pressing concerns are taking up his time.  The medical center I go to is really top notch, heavy on research, and a teaching hospital so sometimes I do get the parade of interns and residents that are learning about HIV with me.  

I have read quite a bit on here about some people having a ID doc, a primary care doc, a this or that doc.  I just have the one.  I do read about others posting how their doctors run this and that test, seems like they spend a lot of time with them.  My appointments like I said are pretty quick.  But at this point I'm doing fine.  

I think one thing we can all agree on is we want to spend a lot of time with the doctor (as long as is needed).  But with volume, insurances, and other reasons thats just not the world we live in.

Offline hope_for_a_cure

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Re: Trying to balance the Doctor patient relationship.
« Reply #29 on: November 08, 2011, 01:34:27 PM »
Dont apologize for your post bug.  This is the platform for doing just that.  Sometimes I think its easier for people to provide negative feedback about situations than warm and fuzzy wonderful ones.  It is a release in a way I guess.  I totally respected (professionally and personally) the first ID Specialist I saw and am to this day glad that he got me on the regimen that is working well.

Its also ok to be high maintenance when it comes to our health.  Outside of that... it can cause problems.  lol

Best of luck to ya! 

Offline mecch

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Re: Trying to balance the Doctor patient relationship.
« Reply #30 on: November 08, 2011, 03:17:14 PM »
Mech, I'm not limited by any outside force.  I have private insurance, live in the US, and fiances are not the issue.  My doctors practice is just very high volume with a lot of complex cases.  My doctor actually specializes in HIV related cancer, so sometimes I have to wait to see him or my appointments are cut short because others have more pressing concerns are taking up his time.  The medical center I go to is really top notch, heavy on research, and a teaching hospital so sometimes I do get the parade of interns and residents that are learning about HIV with me.  

Well since you are not forced to have just one all purpose, have you considered the advantages to you to building a relationship now with a local gp?  And the disadvantages to having a ID doc in high demand as your only doc?  

I just got food poisoning and was really sick and my ID doc didn't need to have anything to do with this.  Just the GP and the docs in the walk in at the local clinic.  

Maybe you are expecting too much from this one doc.  Also a lot of your everyday health concerns might find a BETTER medical surveillance by seeing a GP - that is their career speciality, the whole patient, with referrals to specialists when necessary.  

Go see a GP for a checkup and you aren't going to get some university interns hovering around, that's for sure. 



“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline newt

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Re: Trying to balance the Doctor patient relationship.
« Reply #31 on: November 08, 2011, 04:17:28 PM »
HIV docs are specialists, they will get interested if you have a serious illness of your treatment ain't working. The rest of the time fine truly is fine, usually. This is how simple it can be.

But, it is right someone can answer your questions. Maybe a decent nurse? (we have nurse specialists in the UK and they are great, well, except for the mooing at length but that's only cos they care).

The list thing works.

Understanding what your labs mean also helps, and getting a print out to delve over with a glass of wine of an evening so you can bug your doc by email/letter/consult your GP etc if you see concerns.

Maybe you have the wrong doc just now?

- matt
"The object is to be a well patient, not a good patient"

Offline jkinatl2

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Re: Trying to balance the Doctor patient relationship.
« Reply #32 on: November 08, 2011, 05:40:35 PM »
Just had a seamless doctors appointment with the PA. In on time, flu shot, reviewed meds and bloodwork, and out in less than an hour.

FYI
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline GSOgymrat

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Re: Trying to balance the Doctor patient relationship.
« Reply #33 on: November 08, 2011, 05:47:54 PM »
Seems that fewer and fewer doctors/clinics take medicare patients - and those who DO, often have to schedule three or four patients at the same time in order to make ends meet.

I've experienced several doctors who simply quit practicing because of this.  A cople went into teaching, one is now a researcher for AMFAR. And a few simply left the HIV medicine field altogether.

This is a problem across the board, not just with HIV. Finding Medicaid providers, especially physicians, who can see people in a timely manner has been increasingly difficult but now it is the same thing with Medicare. Unfortunately if the conservatives have their way it will get worse.

Final Medicare Rule Cuts Doc Pay Drastically

http://www.medpagetoday.com/PracticeManagement/Reimbursement/29423?pfc=101&spc=246

WASHINGTON -- The final physician payment rule for 2012 will cut Medicare payments to doctors by 27.4% starting Jan. 1, the Centers for Medicare and Medicaid Services (CMS) announced.
 
The agency acknowledged, however, that the cut likely won't go into effect.
 
"This is the eleventh time the SGR formula has resulted in a payment cut, although the cuts have been averted through legislation in all but CY 2002," the statement said, acknowledging, however, that the agency is "required to issue a final rule that reflects current law."
 
CMS had previously projected the 2012 rates would be cut nearly 30%, so the reduction announced Tuesday is lower than expected, largely because Medicare spending has been slower than expected.
 
The projected reduction in physician payment is tied to the sustainable growth rate (SGR), a physician payment formula enacted in 1997 that links physician reimbursement rates to increases in the gross domestic product (GDP). Because spending on physician services has outpaced increases in the GDP, the formula has called for cuts in reimbursement each year over most of the past decade -- and Congress has voted year after year to push those cuts down the road.
 
The Obama administration said it won't allow the cuts to happen. ...

The cut would create "devastating access problems for patients" ACP president Virginia Hood, MBBS, said in a statement. ...

 


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