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Author Topic: Losing faith in my ID doc.  (Read 848 times)

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Offline mitch777

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  • Posts: 3,540
Losing faith in my ID doc.
« on: August 07, 2014, 09:53:17 PM »
I think he is getting old and tired. He doesn't come off that way when I see him but he has really been dropping the ball in so many ways the past couple of years. He has  always been my favorite doc. Just makes this all the more difficult.

He seems to hear my concerns during my appointment but lately tells me what he is going to do before my next visit and rarely follows through.

A few recent examples:

1. He sent me to Yale about my thick blood level due to testosterone therapy. The doc at Yale said that he wouldn't want to see (can't remember the test right now) it go above 51 due to a greater probability of a stroke. Well, it's been creeping up ever since and has now surpassed 55. I bring it up but nothing gets done.

2. I prodded him to get a dexa scan as I am thin and know it's an issue with us LTS. Took 5 months. Found out I have osteopenia. No big deal but I asked if he had ever checked my vitamin D levels. He said "i don't see them here, I'll look back and give you a call." No call. I had to remind him to add it to my next lab request. I know my bones won't be crumbling anytime soon, but still...

3. Been complaining from day 1 about how Isentress has caused me insomnia. Trazodone helped... for awhile. 6 months ago the Trazodone hasn't been doing the trick and I brought it up to him 2 visits ago. To me it was a time for a med change. ( I have no resistance issues) He agreed and suggested Intelence as a possibility and would check on drug interactions. No followup. So, I brought it up once again last Monday. He said he would send in the script right away. He knows i want to build up a supply due to the heartless inept folks at Acreedo and yet 11 days later no script sent. I spoke twice with one of the nurses and she just says that she will put a note on his "stack". UGH!!!

I called the prescription line and left a message today saying that I'm unhappy about the lack of followup and that I need a call from the doc. Hope that gets some attention. Geez! It's bad enough that I have to make endless calls to Acreedo and now I have to work on the other end just to get a damned script filled.

4. He mentioned at my last visit sending me to a specialist about getting some sort of injection in my neck where my disks are bulging to relieve the pain in my left arm. I won't be holding my breath.

End of rant.
31 years hiv+ (oct. 2013) with a curtsy.

Offline tednlou2

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Re: Losing faith in my ID doc.
« Reply #1 on: August 08, 2014, 12:15:20 AM »
How old is he?  Perhaps he is burned out-- not that age necessarily has anything to do with that.  Or, maybe he's having some issues.  Are you considering a change?

Offline mitch777

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Re: Losing faith in my ID doc.
« Reply #2 on: August 08, 2014, 05:18:31 PM »
How old is he?  Perhaps he is burned out-- not that age necessarily has anything to do with that.  Or, maybe he's having some issues.  Are you considering a change?

I'm guessing 67ish. I don't know if he's burnt out but I'm mad as hell and I'm not going to take it anymore! lol.
(picture me screaming out the window.   >:( .)

I really don't want to change docs but he needs to know that I'm not a happy camper. I spoke to the nurse again today and low and behold he had another day off this week and didn't take the time to send in the script so IF it gets done Monday it will be 2 weeks. She got an earful.

She did say that he sent the referral to the pain management specialist and gave me the number to call. I did and *whoopsie* no record of them receiving it. Left another message and no response.

He's a pen and paper kinda guy which is ok by me as long as he reads his own notes and follows through. Hope my 30 lashes with a wet noodle wakes him up. Every day delayed getting this med change changed means another crappy nights sleep.
31 years hiv+ (oct. 2013) with a curtsy.

Offline Joe K

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Re: Losing faith in my ID doc.
« Reply #3 on: August 08, 2014, 05:41:43 PM »
Hey Mitch,

I think you already have decided that you are leaving your doctor and I don't blame you.  I had this problem once and after awhile, I simply got tired of having to do all the medical work.  I can accept occasional issues as they happen from time to time.  But I cannot and will not, accept real issues being ignored.

After this thread runs a little longer, you may want to print it out and give him a copy.  Some of us LTS come with A LOT OF BAGGAGE and we need the extra attention.  If your medical provider is not meeting your medical needs... well you know the next part.

Joe

Offline mecch

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  • red pill? or blue pill?
Re: Losing faith in my ID doc.
« Reply #4 on: August 08, 2014, 06:03:39 PM »
Id change docs.  Sad since he was a good one for awhile. But it is what it is. 
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Miss Philicia

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Re: Losing faith in my ID doc.
« Reply #5 on: August 08, 2014, 06:20:31 PM »
How many good options are there for you in your area -- have you done your homework on who you would switch to? How far are you willing to travel?

I'm almost 50 and most of the doctors I now see are younger than I am. They seem to be more on top of things in a variety of ways.

Personally for GP/ID doctors I prefer a clinic setting -- they confer on issues, stay on top of new developments, do clinical trials. Plus if my own doctor is out and I need to see someone for a crisis issue I'm not out of luck as far as doing a walk-in.
"Iíve slept with enough men to know that Iím not gay"

Offline Joe K

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Re: Losing faith in my ID doc.
« Reply #6 on: August 08, 2014, 07:05:59 PM »
Personally for GP/ID doctors I prefer a clinic setting -- they confer on issues, stay on top of new developments, do clinical trials. Plus if my own doctor is out and I need to see someone for a crisis issue I'm not out of luck as far as doing a walk-in.

^^^This.  Clinical hospital settings are perfect.  You can get anything from labs, to immediate tests and there is always a doctor available for walk-ins.  The staff is pretty stable and they know you and your issues.  I used Henry Ford Hospital when I was in Detroit and now I use the Montreal Chest Institute: Infectious Disease Clinic.  Montreal also has a large clinic specialized in STDs and it's a one stop shop as well.  All covered under our universal heath care.

The STD clinic was my biggest surprise when I moved here.  Health Care in Canada is designed very differently from in the states, especially without the undue influence of religion.  Here STDs are seen as a public policy issue, not a moral issue.

Joe

Online drewm

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  • Posts: 1,111
Re: Losing faith in my ID doc.
« Reply #7 on: August 08, 2014, 07:25:36 PM »
I think he is getting old and tired. He doesn't come off that way when I see him but he has really been dropping the ball in so many ways the past couple of years. He has  always been my favorite doc. Just makes this all the more difficult.

He seems to hear my concerns during my appointment but lately tells me what he is going to do before my next visit and rarely follows through.

A few recent examples:

1. He sent me to Yale about my thick blood level due to testosterone therapy. The doc at Yale said that he wouldn't want to see (can't remember the test right now) it go above 51 due to a greater probability of a stroke. Well, it's been creeping up ever since and has now surpassed 55. I bring it up but nothing gets done.

2. I prodded him to get a dexa scan as I am thin and know it's an issue with us LTS. Took 5 months. Found out I have osteopenia. No big deal but I asked if he had ever checked my vitamin D levels. He said "i don't see them here, I'll look back and give you a call." No call. I had to remind him to add it to my next lab request. I know my bones won't be crumbling anytime soon, but still...

3. Been complaining from day 1 about how Isentress has caused me insomnia. Trazodone helped... for awhile. 6 months ago the Trazodone hasn't been doing the trick and I brought it up to him 2 visits ago. To me it was a time for a med change. ( I have no resistance issues) He agreed and suggested Intelence as a possibility and would check on drug interactions. No followup. So, I brought it up once again last Monday. He said he would send in the script right away. He knows i want to build up a supply due to the heartless inept folks at Acreedo and yet 11 days later no script sent. I spoke twice with one of the nurses and she just says that she will put a note on his "stack". UGH!!!

I called the prescription line and left a message today saying that I'm unhappy about the lack of followup and that I need a call from the doc. Hope that gets some attention. Geez! It's bad enough that I have to make endless calls to Acreedo and now I have to work on the other end just to get a damned script filled.

4. He mentioned at my last visit sending me to a specialist about getting some sort of injection in my neck where my disks are bulging to relieve the pain in my left arm. I won't be holding my breath.

End of rant.

Mitch, sorry to hear about your issues. Sounds like a pattern of not providing excellent care by this doc and sadly, he probably needs to go.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Losing faith in my ID doc.
« Reply #8 on: August 08, 2014, 08:59:36 PM »

The STD clinic was my biggest surprise when I moved here.  Health Care in Canada is designed very differently from in the states, especially without the undue influence of religion.  Here STDs are seen as a public policy issue, not a moral issue.

Joe

Actually here in Philadelphia the City Department of Health is very active with all STD's, and their AIDS Coordinating Office funds clinics such as mine to screen every patient each 4 months for all STD's, regardless of insurance coverage. They also dispense condoms in high schools per zip code where prevalence is high, all unanimously approved by City Council with little to no public outcry.

Let that be a reminder that not all parts of the US are the same :) There are large sections that are as progressive or more so than other parts of western industrialized countries abroad.
"Iíve slept with enough men to know that Iím not gay"

Offline tednlou2

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  • Posts: 4,887
Re: Losing faith in my ID doc.
« Reply #9 on: August 09, 2014, 12:08:45 AM »
I've had issues with my doc, for a long time.  I tried to find another doc, but there are only a few here.  I really didn't want to leave the HIV clinic.  I do like the one-stop shop-- can get labs done there and all they deal with is HIV. 

I've stayed with him, because things were pretty status quo for so long.  Now that is changing, I'm considering asking to be switched to another doc.  After almost 6 years, it still seems like he just began working in HIV medicine. 

Offline BT65

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Re: Losing faith in my ID doc.
« Reply #10 on: August 09, 2014, 06:38:25 AM »
M, I would be checking out all other options.  I know a bit how you feel, because my doctor's office takes such a long time to do referrals.  I saw my doctor probably three weeks ago and he stated he's making a couple referrals, but nothing yet.  I'm going to call the office Monday, if I have time, to let them know how I feel.

Needing to be our own advocates is a forever job, isn't it.  Let me know how you come out with the complaints, if it makes the doctor move faster or not.  Maybe I can take lessons from you.

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Miss Philicia

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Re: Losing faith in my ID doc.
« Reply #11 on: August 09, 2014, 07:49:31 AM »
The other great thing about a clinic setting: with multiple doctors available should your assigned one depart it's ever so easy to find a new doctor. No hassle, no requests to transfer your medical records, etc.

I've had my current doctor now for 8 years, tying the previous record of my first HIV doctor in NYC. But in between these two were three other doctors with short tenures and it was a hassle from 2001-2006 which just also happened to coincide with two OI's and going on disability. Can you believe I had to ask a completely new doctor to fill out disability forms for me?
"Iíve slept with enough men to know that Iím not gay"

Online Jeff G

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Re: Losing faith in my ID doc.
« Reply #12 on: August 09, 2014, 08:16:48 AM »
The one thing I have learned about my clinic is that some of my healthcare needs are better left to my GP . Using my GP for referrals cuts my wait time considerably . I have been using the same GP for about 6 years now and always have been able to get in to see him the same day I call for an appointment . Also, I'm on medicare so there are many things that I do not have to get a referral for but usually will see my GP first to see if he can address the issue .

I have learned that if I plan ahead I can cut out unnecessary visits to my doctors, for instance, I was treated for a stomach ulcer a few months ago and now feel like I need follow up care . Instead of making an appointment I called and told them that I had been previously treated and was still having problems and asked them what did I need to do,  they scheduled an appointment for a test that would not have been performed the same day if I had made the appointment just tell them I was still having problems .

I have also learned that my pharmacist can answer some of my med questions without having to involve my doctor or his staff . In some instances my pharmacist has called my doctor on my behalf about a med I'm on and got the ball rolling a lot faster than if I called and gave a message to a receptionist who then would give it to a nurse ... you get the picture . I talked to Mitch about some of this but thought I would share anyway .       

Online tryingtostay

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Re: Losing faith in my ID doc.
« Reply #13 on: August 10, 2014, 12:17:51 AM »
Have you called him out on all the crap he has forgotten?  My doc is 37 and only had 3yrs of 'Specializing' with HIV and I feel I am almost in the same situation as you.  I've told him from day 1 that I am dizzy constantly (still am) and I have to suggest things that I need done.  He listens if I ask for a referral but I'm surprised that he doesn't take the initiative in my symptoms.

For those of you who think I am on my own rant I decided to start off my post that way instead of the first thing that came to mind that I was going to post and I'll leave it here; (PC) screw him *the id doc*  Sorry you've come to that place.  Like I said maybe ask what's going on with him.  The hell with offending him if you question his work.  He doesn't have HIV or AIDS with symptomatic problems, and there is nothing wrong with asking if his real life is distracting him from his work.  I'm sure you wouldn't ask without first being sensitive about it. Then if he doesn't give any clues that something might be going wrong with his RL then stress a little more about how is lack of attention is affecting you.  Ask him if you should see another ID doc - level with him. 

Offline mecch

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Re: Losing faith in my ID doc.
« Reply #14 on: August 10, 2014, 10:31:08 AM »
Tryingtostay -  I do not concur. I do not think patients have any right whatsoever to ask if a doctor's personal life is interfering with his/her work. 
I am a teacher and if a student asked me this I would not be able to respond very much at all, because its none of a student's business and simply not an appropriate conversation - exchange of information.  What good could become of such an exchange?  I think this would be the same in almost all professions, no? 
I suppose its shows concern to ask, but its nevertheless completely inappropriate.


ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline mitch777

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Re: Losing faith in my ID doc.
« Reply #15 on: August 10, 2014, 09:05:14 PM »
Well geez! Take a day and a half off and have all of this to read and respond to. I really do appreciate the input.  :-*

In order, kinda.

I wrote the post in a time of frustration. It's been building but I guess I needed to hear from others if my needs and expectations were beyond realistic. I heard you all loud and clear. Thank you.

Like I said, he has been my favorite doc for so many years and this lack of followup from him is relatively recently gone a bit haywire. My hopes are is that he will call me to discuss this or maybe he will hear my frustrations passed along from the nurse. Dunno.

He is human. IF nothing changes soon I might need to consider a change but I don't find it fair of me to not give him a chance. Betty, I will let you know how it goes. It is odd why it takes some docs so long for referrals isn't it? Does anyone have a reasonable explanation for this phenomena? Followup at the most basic level IMO. Really, how hard could it be? ugh.

I haven't done my homework yet in seeking out a new doc. (see above) All good info if/when the time comes in any case. Thanks again.

Ted,
I'm actually more concerned about you and your doctor. Are you on meds yet? hmmm...

Jeff,
I only wish my GP could be like yours. Don't get me wrong, he's great. If I thought he can be of help I wouldn't hesitate. I agree with you completely about following up yourself if things don't go so smoothly after seeing a specialist. Why start back a few squares? I also don't have the relationship that you described with your pharmacist. Kenny picks up most of my scripts. I do seem to get a good response most of the time whenever I have to deal with them on the phone. Usually it's about insurance crap. I haven't really felt the need yet to discuss meds with them but I see what you are saying.

Anyway, I honestly don't know what to expect in the next two days.













31 years hiv+ (oct. 2013) with a curtsy.

Offline OneTampa

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Re: Losing faith in my ID doc.
« Reply #16 on: August 10, 2014, 10:42:19 PM »
Mitch,

I can not add substantially to what already has been noted.

I do, however, understand your concern.

I have been with my GP for over 25 years my Specialist moving to 20 years.  Both still appear to be in top form.  They also admit that they have learned quite a bit from me
as I have them.

Bottom line, you have to take care of your health and make decisions that benefit you. Like, I think, if memory serves me right, Theyer wrote a while back, "You hold the copyright to your own body."

Take care.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaŪto frito."

Offline 2tcells

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Re: Losing faith in my ID doc.
« Reply #17 on: August 13, 2014, 12:09:28 AM »
im about to get a new dr as well. I have been seeing mine for a year since dx. he must be 80 and thinks im a new patient every time I see him! they lost all my records last time I went! and hes a jerk on top of it all. I will not be seeing him again
7-4-13 diagnosed cd4- 2      vl-220,600
8-3-13                     cd4- 4      vl- 448
9-3-13                     cd4- 40    vl- ud
11-3-13                   cd4- 54    vl-ud
1-9-14                     cd4- 62    vl- 43
4-3-14                     cd4- 110  vl-ud yay!
8-5-14                     cd4- 95    vl-ud boo

 


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