Blow-up With Doctor

[tednlou2]

I returned from my Florida vacation and went to my regular doctor appointment.  It started out bad in the waiting room with some woman yelling and crying at the front desk about how her doctor had cut off her pain meds due to testing positive for pot.  I've heard of docs testing people to make sure they were actually taking their pain meds and not selling them, but I had never heard of testing someone for pot.  If they felt she needed the pain meds, then it seems cruel to cut someone off for a drug that many believe should be legal anyway.  But, I digress.  By the way, I apologize for the length of this post and the rambling.

I've mentioned before how I was not satisfied with my doc and his knowledge.  I've been in the process of finding a new doctor outside the HIV clinic.  I came to the clinic, because I didn't have insurance at the time.  I suppose I haven't been on the ball about that as much as I should, because the last few times I've seen other docs due to my doc calling in "sick".  He only works Monday afternoons and I guess that is just too much for him.  Anyway, I'm waiting in the room and this doctor (actually resident) comes in by himself.  My doctor is not with him.  I had always thought doctors were suppose to supervise residents at all times.  The resident doc appeared to be from India or Pakistan.  I could barely understand what he was saying.  This is a problem.  From what I could understand, he starts telling me I need to be on meds.  He points to my first CD4 of 171.  I explain to him (or try to explain) that was a temporary decrease and my numbers bounced back.  He then asked why I signed up for disability at my young age.  I had to try to explain to him that I didn't have insurance or a job at the time and KY ADAP rules required anyone with a CD4 count below 200 to sign up for disability to qualify.  I tried to explain to him that was a moot point now and wasn't sure why we were spending so much time on that.  Keep in mind, this conversation was like trying to speak to someone who just barely speaks English where you have to think about what it is they are saying and the same with him--basically where the language barrier was still so great that a translator would still be needed. 

He said my doctor believed I should be on meds and that they had discussed before I got there why I had chosen not to start.  I asked him why my doc wasn't there, and to get him.  My doc comes in and suddenly acts like he has always been big on starting meds very early.  I told him when we last talked about meds in early 2010, he was still unaware of the new guidelines that came out Dec '09.  He was not aware of the new guidelines several months after they came out.  At that time, I mentioned the new guidelines, because he told me we would start meds around CD4 350.  I had told him that I would not wait much below 500, given all the new data.  So, I was kinda pissed that in front of this resident, he was now saying something totally different and trying to act like he was all up on current treatment guidelines and acted like he had been pushing me to start meds already.  It was totally obvious he was trying to put on a show for this guy. 

I asked what my current numbers were.  They were fumbling around the computer to find them.  He read off some numbers.  I told him those were my previous numbers.  He finally found my current numbers of CD4 684 at 24% and VL of 16,600.  I said they've actually improved--even though it wasn't really a significant change.  They proceed to ask me if he wrote me a prescription today, how would I get them--what's my insurance and all that.  They have this discussion about whether insurance would pay for meds with my CD4 being over 500.  I replied I had no idea, but that I thought if a doctor said you needed them, then it wouldn't matter the CD4.  But, I was getting more angry.  I told him the last time I saw him he was talking about a CD4 of 350 and now wants to write me a prescription today.  I complained to him how he only works Monday afternoons and couldn't find the time to show up for my appointment.  He left the room and didn't return.  The resident began talking to me about how I'm putting myself at risk for dementia and organ problems.  He kept mentioning dementia.  He must have seen those NYC PSA's.  I said let's have a discussion about untreated HIV even with decent numbers.  I wanted to talk about what happens to the body.  Well, due to the language problem, that was not going to be easy.  I asked for my doc to come back.  He was "busy".  I tried to ask about possible side-effects with meds--which is worse for my body right now...VL of 16,000 or the meds.  I was being sincere and wanted to have an intellectual conversation about the pros and cons.  The resident tells me that I would need to get another genotype done as I may have become resistant to other meds.  I asked if I haven't had sex with someone where I possibly could have contracted a resistant strain, how that would occur.  He couldn't understand what I was asking.  I'm still learning about HIV and I know HIV mutates, so I was trying to find out how that would cause resistance to meds now that didn't show up before. 

Since he brought up organ damage from untreated HIV, I tried to talk to him about about these pains I get around where my liver is.  I wanted to know whether you could have good liver numbers, but still have issues going on that were going undetected.  I also wanted to know about the heart.  My mom had a heart valve replaced and her doc said my brother and I should be checked for the same problem.  I wanted to know whether HIV could increase the chances of having a heart issue and whether I should go ahead and get checked.  Again, he couldn't understand me.  Well, he must have understood some of it, because he said I was worrying too much.  I told him he was just telling me how I was putting myself at risk for organ damage and now I'm worrying too much when I ask about it.  As I was leaving, he asked again whether I wanted a prescription.  I told him I would need time to process this as meds had never been suggested up to this point.  He made my next appointment for 4 months.  I asked why the change from 3 months--especially in light of feeling I should be on meds and putting myself at risk and all that.  He said 4 months was good, because I was stable and looked very healthy to him.  I, again, tried to have a conversation about the meds issue.  I said this meds thing wasn't about being in any kind of danger now, but the feeling that untreated virus is bad for you longterm.  I was met with another blank stare.  I was never told about all the other labs--CBC, Cholesterol, and Hep titers.  I had to ask for a printout to get those.  I created a response to Hep A vaccine, but not Hep B.  This is probably due to the clinic screwing up my vaccinations where I got more Hep A than I needed and not enough Hep B. 

Just needed to vent.  I'm done with this clinic.  I deserve a doctor who is intellectually curious about HIV and actually spends time with his patients.  I feel my doc sees this job as a way to make some extra cash once a week.  If this is how he acts now, how could I count on him for expert answers once I start meds or get sick with something.  I think he was in the room for about 4 minutes.  Oh, the other thing that pissed me off was my doctor saying since I believe I'm coming up on my 10th year of infection, I would "probably progress down to AIDS before too long."  While that very well could happen, he has no way of knowing that and shouldn't have said that.  It was really like being in the Twilight Zone.  He acted totally different in front of this resident.  I invite the discussion about whether any VL is not good.  Maybe it would be better to be on meds now.  I just don't like how this was handled with my doc always seeming detached and not available for serious discussion and just popping into the room for a few minutes when suggesting a prescription be written.  This is serious stuff and I just can't imagine leaving a patient unsupervised with a resident who barely speaks English while suggesting a prescription be written that day.  If my doctor did have a change in his views of when to start meds, he should have spent even more time with me than a regular office visit where he just tells me my numbers and sends me on my way.  At this point, I feel the appointments are just a waste of time.  I could have my labs mailed to me and monitor them myself.   

[tednlou2]

Just wanted to say that my post looks much longer in the thread than when writing it.  It didn't look nearly this long.  Sorry about that. 

[BT65]

Sorry you had such a bad experience.  You're already looking for another doctor (?), so that's that.  I just wanted to comment on the lady who was on narcotics, yelling about being cut off because she tested positive for pot.  At a lot of medical establishments, when someone is being prescribed long-term narcotic therapy for pain management, the person has to sign a contract with the doctor.  And in that contract, it says the person will submit to random drug screens.  The person doesn't know when the drug screens will happen, they usually find out when they come in to pick up their script for the pain meds (i.e., they'll show up, and the receptionist will find a note attached to the prescription, requiring the person to pea in a bottle).  If the person tests positive for anything other than opioids, that usually means the end of the narcotic used for their pain management.  It's usual practice.

[mecch]

Oh, dear, what a total drag.

Of course you deserve the best doctor possible.  I hope you can manage to get yourself one who suits you more.

Of course its enraging when you feel like medical consultations are slap dash and inexpert.

Just to add some perspective, and not as a criticism, I'm wondering what job you work or worked?  I just got through marking several classes of individual student projects that were dense and could run to 10 pages with different technical things they had to do, all a bit challenging.  It took days and days to correct all this, and I had to be on professional point to do this well.  And yet, because of the structure of schools, I only had a really limited time to spend with these students to give face-to-face feedback on their work and my corrections, and I know I could do better for certain of them if I had more time to spend.  And also there isnt always time to justify to everystudent the advice or direction I give them, to explain my knowledge (which the state is paying me to apply, trusting I do it well enough if not brilliantly.) You have to do salary calculations, and also consider your obligations to the whole group, etc etc.  Its kind of the nature of professions.  

So now I just came from my ID doc and he's a big cheese, charges an arm and a leg to my insurance (everyone in Switzerland has private insurance so very few HIV+ would be with a publicly employed doctor or in a "free" clinic situation).  He schedules 3-4 appts per hour!  It  has seemed on a few occasions, slap dash. But I know in general, he does his job very well and knows his HIV medicine and keeps up.  I'm not trying to say your doctor knows or doesn't by comparing him (them, you had two) to mine.  I'm just saying you have to deal with what you can get and, unfortunately, the squeaky wheel gets the grease.   I had to remind him twice that I asked for a flu vaccine and then at the end of the consultation when he was getting paperwork for his next, in reception, I had to remind him AGAIN that he had to ask the nurse to give me a vaccine.  

I know that as a teacher I WILL respond with more time and attention to the ones who squeak a lot, if their requests are well founded, justified.

So just my gut reaction.  Stick to what you want to be considered in your own treatment and unfortunately, it is what it is, you are going to have to squeak a lot around your clinic or the next one you go to, to get what you need.  

And don't humour idiots unless it is absolutely "politcally" essential  (e.g. the idiot has the power to get you what you need).  One time I was in the hospital with Hep A and this intern came in and completely insulted me with his ignorance and insistence that I had to be HIV+ or a drug addict, for some bizarre rational in his head.  (I was neither)  I had to shout to get him out of the room but I knew he was unimportant to my health or my treatment.  

[GSOgymrat]

Sorry you had such a bad time with your doctor. I think you are doing the right thing by finding a new one. It sounds like you were wanting to go into a lot more detail than they were prepared for and the language barrier didn't help. I'm sure they were hoping you would just take the prescription and leave.

In the future you may want to consider doing your own research and having an idea of what you want in terms of meds or questions before you go. Consider writing a list. That is what I did when I would go to my partner's cancer appointments with the oncologist. That way I could efficiently use the appointment time and make sure nothing was missed.

It is very important to find a doctor with whom you have a good fit. I don't have a ID doctor, just a PCP, however my doctor is very knowledge about HIV, a sports medicine specialist and I have been seeing him for around 15 years. He knows everything about my situation and I feel comfortable talking to him about anything. He is very chatty and sometimes will talk my ear off.

[metekrop]

I am sorry for your experience.  I always worry about docs.  In fact I have now a good one who is knowledgeable and carrying except the fact that he is very busy.  But I always wonder where I would get a good doctor if I have lose mine for some reason.  Is there a list of doctors in each of the locations?  Are the ASO the best places in finding the best doctors?

[buginme2]

This may be a little off topic, but I noticed in your thread that you are from KY is that correct?  I wonder how the service compares in different parts of the country.  I can only assume that the HIV care in San Francisco, LA, and NY are superior than in other parts of the country.  

I actually see doctor who's specialty is HIV related cancer.  He also see's patients with HIV who do not have cancer but thats what his specialty is.  So far I have been comfortable but if I wasn't I would switch doctors however..I live in a city with a lot of HIV specialists.  If you live in an area without many HIV specialists I suppose your options are limited and you may want to try and tough it out.  

Since I have been diagnosed I have wondered if I ever need to move from here taking into account the level of HIV care wherever you move to is something that needs to be considered.

As far as the pot goes......I think there is more to that story.  

[PozJeepGuy]

I just moved to colorado from Kentucky.  If you are in Northern Kentucky say Louisville up send ;me a private message letting me know what area you are in.  I have a friend who works for a aids group and is a case worker in Cincinnati and she works closely with the folks in Northern Kentucky and I can get you a list of HIV doctors in the area.

[mecch]

I hear in France there is a major push for treatment as prevention, therefore a pushiness to get all HIV+ people onto HAART, so maybe that is starting more in America.



It seems to me if one has a good GP the GP should be able to consult virtually with an ID if there is no ID locally.  If an ID has all the tests in front of him/her, it seems in some instances for some people, HIV care can be phoned in.

[eric48]

Hi,

On a funny side, I had misread your title, I thought you were saying 'Blow job with Doctor' LOL

If you had MY doc, you would understand why I got confused. LOLOLOLOL

Eric

[Ann]

Hi,

On a funny side, I had misread your title, I thought you were saying 'Blow job with Doctor' LOL

If you had MY doc, you would understand why I got confused. LOLOLOLOL

Eric

Me too, glad I'm not the only one! It totally wouldn't surprise me to see a similar thread title some day, what with all you studs who post here. You never know!

[mecch]

Well it would probably be a dreary Am I Infected post like "I blew my doctor and he had just seen another patient who looked AIDsy and I didn't notice he washed his hands and he put his finger on my no-no - now I feel like I have the flu."

[420dreams]

I must say I feel the pain of doctors that don't really care about HIV+ patients.  I live in a very rural community.  There are only two doctors within 90 miles from where I live.  And, both those doctors are awful.  One doctor told me I could no longer take Prevacid for GERD because he wanted me on a protease inhibitor.  I said no.  I will not suffer acid reflux just to take a protease inhibitor when I haven't even failed or tested to be resistant to any meds.  I fired him and went to the next.  He, too, put me on a protease inhibitor.  I was also taking 5mg of Valium four times a day.  Protease inhibitors also inhibit the clearance of benzodiazepines.  I kept getting more and more depressed.  My psychiatrist didn't know what to do.  My HIV doc kept telling me it was side effects and pass.  After three months, I fired him.  Now I am left with no HIV health care.  Oh, yeah, mental health care isn't that great either.

[carousel]

I must say I feel the pain of doctors that don't really care about HIV+ patients.  I live in a very rural community.  There are only two doctors within 90 miles from where I live.  And, both those doctors are awful.  One doctor told me I could no longer take Prevacid for GERD because he wanted me on a protease inhibitor.  I said no.  I will not suffer acid reflux just to take a protease inhibitor when I haven't even failed or tested to be resistant to any meds.  I fired him and went to the next.  He, too, put me on a protease inhibitor.  I was also taking 5mg of Valium four times a day.  Protease inhibitors also inhibit the clearance of benzodiazepines.  I kept getting more and more depressed.  My psychiatrist didn't know what to do.  My HIV doc kept telling me it was side effects and pass.  After three months, I fired him.  Now I am left with no HIV health care.  Oh, yeah, mental health care isn't that great either.

Welcome 420.

Just wondering if this should be a new thread.  Sounds like you could do with some advice and support for the situation you're in.

[poz91]

It seems to me if one has a good GP the GP should be able to consult virtually with an ID if there is no ID locally.  If an ID has all the tests in front of him/her, it seems in some instances for some people, HIV care can be phoned in.

I'm starting to wonder if there's any point having an exclusive ID doc...?

I walk in, the nurse reads my numbers from my latest labs off the computer, she hands me the lab order for my next visit, I leave... I never see hide nor hair of a doctor at all.

And when I actually have any health issues, they seem to always want to refer me to someone else...

Fair weather doctor, lol... You're doing great, numbers are great, everything looks great! What's that? Not feeling well. Try Urgent Care....
 

[mecch]

Oh I think in a well funded system, HIV+ people should have ID doctors, even healthy no problem HIV+ people
But a GP who really takes care of the whole patient seems preferable to a "fair-weather" ID doctor who has no time really, and isn't even responsible for all that much.  Im pretty sure my ID doctor would step up to the plate if there were issues but so far he's made it clear that a lot of stuff is out of his mandate and refers me either back to my GP or to specialists. 

[StrongGuy]

Having a doc that provides care based on the whims of his memory is disturbing. Good luck finding a new doc!