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Author Topic: Forced to Change Doctors (again)  (Read 4821 times)

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Offline bear60

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Forced to Change Doctors (again)
« on: December 03, 2009, 09:48:25 AM »
Sigh.
Its pretty sure that things change.  After over 10 years with my current Primary Physician, I am being forced to seek a new primary physician.  
In the past, read: the 1980's, change happened all too quickly.  My primary physician Dr. Peter Mazzoni died of AIDS.  It was horriblely upsetting to see him in the hospital, days before he died, trying to manage his own care.  There is now a free clinic in Philadelphia named after him.
I think I had three primary physicians in the 1980's ending up with another well known HIV physician,  Dr. John Turner.  He was known for conducting one of the earliest HIV vaccine trials.  I didnt qualify as I had too much of a reaction to the injected HIV material. This stuff was injected under the skin and the resultant "bump" that formed determined if your immune system was fighting the virus or not. I guess my immune system was fighting cause I had a big "bump".  Sadly in the end John Turner became a victim of his own enthusiasm and had a nervous breakdown.  After losing so many patients to AIDS its no wonder he was overworked and over wrought.
When Kurt and I started our relationship I changed physicians so that we would have the same one. Why go to two primary physicians??  
This year, my reason for changing physicians is very different than in previous years. In case you are wondering, this is a rant.
First sign of change was when she told me she could no longer manage any of my HIV issues so I needed to find an I.D> doctor who could assess my situation and make recommendations for starting meds or not.  Well, this simply meant she was no longer involved with many HIV patients and had decided not to keep up with all the new treatment information etc that having HIV patients required. Ok.  So I went off to Kurts ID doctor and became a patient of his.  His assessment of my LTNP situation was, suprise suprise, we will just wait and see.  Take no intervention, blood tests annually.  ( I mean this is what we had been doing for 20 years.)
Now, I am losing Dr Cohn as my primary physician becase she has decided to transition into a new kind of medical practice called BOUTIQUE MEDICINE.  Outrageous classification if you ask me.  What....I get my nails done too?   Well, as it turns out, BOUTIQUE MEDICINE means that all of her patients have to pay out of pocket ( not covered by any insurance) 1500.00 dollars to sign up with her and then 1500.00 dollars a year to be her patient.  I declined to pay and am changing doctors.
This speaks to the imposible situation doctors have been put in, with too much paperwork and restrictions on time with patients (each visit).  She told me that she prided herself on taking a lot of time to work with her patients and explore all the aspects of wellness which takes a longer amout of time than is currently alotted her per visit.  Oh, ok.  But if I AM TOO POOR TO AFFORD HER SERVICES I GUESS I DONT COUNT.
Rant over.


« Last Edit: December 03, 2009, 10:34:53 AM by bear60 »
Poz Bear Type in Philadelphia

Offline aztecan

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  • 29 years positive, 56 years a pain in the butt
Re: Forced to Change Doctors (again)
« Reply #1 on: December 03, 2009, 10:01:19 AM »
Damn Joel,

Boutique Medicine? I had not heard it called that before, but I know of some doctors who did the same thing.

The problem is just what you described. I could never afford such a thing. Moreover, even if I did, how would I pay for my meds if they were prescribed by an out of network doctor?

This just plain sucks Joel. I am sorry it is happening to you.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Online pozniceguy

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Re: Forced to Change Doctors (again)
« Reply #2 on: December 03, 2009, 11:56:37 AM »
so sorry to hear that but afraid it is the future for many Drs,  the "new medical reform" currently being considered will put even more Drs in such a position by lowering the compensation and setting even more paperwork..


Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline leatherman

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Re: Forced to Change Doctors (again)
« Reply #3 on: December 03, 2009, 12:50:32 PM »
I have changed ID doctors twice now and never had a primary care physician.

The first one turned out to be a casuality of the AIDS crisis himself. While I thought he was an uncaring homophobe who took no interest in my complaints about side effects etc; he was actually freaking out about nearly all of his clients dying (like my first partner), and was busily turning into a raving alcoholic who is now stripped of all hospital priveleges and may even no longer be in business.

The doc I've got now is the ONLY ID doc around a 2 county area in SC - hence the reason he runs this clinic. The clinic has 2 nurse practioners and so I only needed the doc to sign off on my med refills so far. ;) Of course I could go to Charlotte but then I'd have to pay cash as the SC medicaid card won't pay up there.  ::) :D

Will you be able to get another doc fairly easily? I mean besides your time and effort (which I'm not discounting)?
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline bear60

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Re: Forced to Change Doctors (again)
« Reply #4 on: December 03, 2009, 02:16:54 PM »
Mikie
I hope to make my new ID doctor my primary physician.  At least I have now enrolled in Medicare, as I am 65, and have Keystone Blue Cross Supplemental 65.  This makes my life so much easier.
Thanks for the thoughts.

Joel
Poz Bear Type in Philadelphia

Offline leatherman

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Re: Forced to Change Doctors (again)
« Reply #5 on: December 03, 2009, 04:32:15 PM »
I hope to make my new ID doctor my primary physician.  At least I have now enrolled in Medicare
Thankfully, knock on wood, up to now (48 is looming around the corner), all my health problems have been HIV-related and I forced my ID doctor into being my primary physician.  ;) At first he used to try to squirm out of issues that I brought up; but I could tie ever problem back to being in his field of expertise.  ;D

I  really miss him now, not because I don't like this new guy and not because of any problems I'm having; but this was the doctor that finally took an interest in me and helped me get - and stay - on the meds. I even waited to leave town when I moved until after my last appt with him. If it weren't for that guy, I really wouldn't be here today.

I finally, after 3 months of hassling between Ohio and South Carolina, just got my medicaid card from SC (Woohoo! now I can get sick if I need to LOL); but I've still got to change medicare part d from an Ohio plan to an SC plan. Making that choice more confusing is my Mom and her hubby trying to change their medicare plans right now too. ::)

Glad to hear Medicare has kicked in. ;) It's so much easier to get medical treatment, medicines, and to stay alive when you can afford it all. LOL :D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Dachshund

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Re: Forced to Change Doctors (again)
« Reply #6 on: December 04, 2009, 06:46:44 AM »
so sorry to hear that but afraid it is the future for many Drs,  the "new medical reform" currently being considered will put even more Drs in such a position by lowering the compensation and setting even more paperwork..


Nick

What a total crock of....

Offline Miss Philicia

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Re: Forced to Change Doctors (again)
« Reply #7 on: December 04, 2009, 09:59:04 AM »
Hey Joel, I hope the switch goes OK.  I've switched a lot and out of 5 of them I only had one miserable experience.
"Iíve slept with enough men to know that Iím not gay"

Online Jeff G

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Re: Forced to Change Doctors (again)
« Reply #8 on: December 04, 2009, 10:13:09 AM »
Hey Joel , I hope your change is a smooth one .

I have had to many doctors so I try not to get to attached . I try and look at doctors as hookers .... there is one on many a corner , do me good or I will try another corner next time .

Offline aztecan

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Re: Forced to Change Doctors (again)
« Reply #9 on: December 04, 2009, 03:18:42 PM »
The doc I've got now is the ONLY ID doc around a 2 county area in SC - hence the reason he runs this clinic. . . . Will you be able to get another doc fairly easily? I mean besides your time and effort (which I'm not discounting)?

Boy, do I hear you on this one. We have one doctor, internal medicine, who sees HIV patients. He was set to retire a few years ago, but said he would't abandon the HIV patients unless there was someone capable to take over.
He is a saint.
He is still seeing us. He will be 70 next month, I think.

If he were to leave or retire, or something ( he is 70, afer all), we would probably have to travel to Albuqueruqeu to see someone.


Joel, I hope you have better luck finidng the doc you need.

HUGS,

Mark





"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline denb45

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Re: Forced to Change Doctors (again)
« Reply #10 on: December 04, 2009, 04:10:11 PM »


My Primary ID=Doctor is my only doctor, and it's been that way for the last 8 yrs. I've lived here in New Mexico, accept now, I have a new Renal Doctor, witch is kind of scary, as it seems that my kidneys might be failing, my ID -doctor suspects that this is due to yr. of HIV+ and HARRT Meds, next yr. I will have several biopsies scheduled in early spring, I sure hope I don't end up on kidney dialysis , I here this isn't very FUN   ??? Joel, like you told me, Hang-in-there buddy, somethings always have a strange way of working themselves out ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline jm1953

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Re: Forced to Change Doctors (again)
« Reply #11 on: December 04, 2009, 11:09:27 PM »
Joel,

Sorry to hear about your doctor of ten years I think you said passing away.

It is difficult to find a good HIV doctor these days.  My current one has moved his practice three times in one year.  And as brilliant as he is, he seems so stressed about his office and it's operation I sometimes don't think he focuses on my problems when I'm seeing him.   In fact, I have to literally watch him call in prescriptions to make sure they are done.

Generally I direct the appointments, as his charts are not exactly organized.  And I see him every six weeks.

At any rate, I understand your frustrations.  I am pretty loyal to my doctor so I will see how it is at his new location even though it is quite a drive.  I'm hoping he finally has a great environment for both he and his patients.  But if not, guess I need to go doctor hunting again. 

By the way, never heard of boutique medicine.....if that was how you referred to it.  I've never heard of an HIV or primary not taking insurance, but only working on a cash only basis.  Is he going to start administering botox or doing out of pocket cosmetic procedures? 

Anyway good luck guy,

Best,

jeff
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline jm1953

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Re: Forced to Change Doctors (again)
« Reply #12 on: December 04, 2009, 11:16:31 PM »

My Primary ID=Doctor is my only doctor, and it's been that way for the last 8 yrs. I've lived here in New Mexico, accept now, I have a new Renal Doctor, witch is kind of scary, as it seems that my kidneys might be failing, my ID -doctor suspects that this is due to yr. of HIV+ and HARRT Meds, next yr. I will have several biopsies scheduled in early spring, I sure hope I don't end up on kidney dialysis , I here this isn't very FUN   ??? Joel, like you told me, Hang-in-there buddy, somethings always have a strange way of working themselves out ;)

I have stage 3 kidney disease meaning i have moderate kidney function.  Think it goes to stage 5 when dialysis is employed.  Out of curiosity, how is your creatinine  (sp) and your GFR functions?  Do you know what stage you are at?  And has your doctor looked at your cocktail or other meds your taking that you maybe can live without that are putting more stress on your kidneys?  And have you been referred to a nutritionist or kidney class to know a good kidney friendly diet to be on?  All I know is I drink about eight glasses of water a day, and have been eating a lot more healthy and my kidney functions are stable. 

I hope all goes well with yours.  Keep me in the loop if you will?

All my best,

Jeff

Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: Forced to Change Doctors (again)
« Reply #13 on: December 05, 2009, 10:43:45 AM »
I have stage 3 kidney disease meaning i have moderate kidney function.  Think it goes to stage 5 when dialysis is employed.  Out of curiosity, how is your creatinine  (sp) and your GFR functions?  Do you know what stage you are at?  And has your doctor looked at your cocktail or other meds your taking that you maybe can live without that are putting more stress on your kidneys?  And have you been referred to a nutritionist or kidney class to know a good kidney friendly diet to be on?  All I know is I drink about eight glasses of water a day, and have been eating a lot more healthy and my kidney functions are stable.  

I hope all goes well with yours.  Keep me in the loop if you will?

All my best,

Jeff



1st of all, JOEL, sorry for the high-jack, and 2nd, I think we need to move this over to the RE: Strange skin issues, also kidney question: thread
so, I'm gonna move this in the right thread  RE: Strange skin issues, also kidney question:......thanks  :)

Jeff welcome, to the Long-Term Survivors Forums, I read some of your post over in the RE: Strange skin issues, also kidney question: and I think we should continue this over there  :) again sorry about the hijack JOEL  :-*


« Last Edit: December 05, 2009, 08:14:17 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline poet

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Re: Forced to Change Doctors (again)
« Reply #14 on: January 13, 2010, 01:28:11 PM »
When I was living in Manhattan, I opted to go from one doctor to the next (there were that many), in the mid-1980's because I didn't buy the concept of taking meds before I had to do so and because I needed to be a partner in my care, not a stenographer.  I was able to continue this pattern until I left for P-town (one clinic), Hyannis (one clinic) and now Maine (one clinic).  I feel very lucky to have the gay doctor I currently have here, but he did shock me when he started tallking about places to retire last Fall.  I have no idea how old he is, but he certainly looks to be in his 40's at best.  There may be things going on about which I don't know (his own health concerns? why he came to central Maine from...:).  Like all of you, just when we think that the only thing we have to focus on is our health, our healthcare provider, who it might be, comes back as a question. 
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline actupts

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Re: Forced to Change Doctors (again)
« Reply #15 on: January 16, 2010, 04:36:30 PM »
The nurse practitioner I have been seeing for the last two years lost her job in the recent budget cuts here in San Francisco.  I really miss her and have been putting off and putting off seeing the new doctor the clinic found for me.  She was very experienced, having started as a nurse in AIDS clinics in the 1980s and later becoming an NP.  She was also unusual in that she listened to patients and actually examined them.

As for kidney problems, I developed stage III chronic kidney disease  about 6 years ago.  A decade of Crixivan, five years of Viread, and nephrotoxic chemotherapy drugs apparently took their toll.  After my doctor pulled me off of HAART for a while to help treat my iatrogenic Cushings disease, and I started, on my own, antioxidants (selenium and alpha-lipoic acid), my kidney function improved to the point that my creatinine is now solidly normal. 




Offline robsurmer

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Re: Forced to Change Doctors (again)
« Reply #16 on: February 06, 2010, 07:33:30 AM »
Hi Joel,
I am new to this forum if not this site and read your posting with interest. I live in Brighton, East Sussex in the UK and have been attending our local HIV clinic since 1992 (I was initially diagnosed in Sydney, Australia in 1987). I have had the same HIV consultant since 1996 and am very happy with him. My GP (General Practictioner/family doctor) is fairly new just because the old one retired, he is aware of my status and I tend to see him for non-specific HIV issues. I am covered under the National Health System in the UK whereby you are not required to pay anything for treatment of any kind. We are especially lucky as the funding for HIV/AIDS has been, until last year, ring-fenced which meant our care was of a higher standard than almost all other departments in the local hospital. We have the ability to 'walk-in' to our clinic if we feel the need and be triaged by a nurse before seeing a doctor- out of hours I have even presented at our specialist HIV ward in the hospital if it is an emergency. All our meds are free and the latest combinations are available. I am on Isentress,Prezista boosted by Norvir ,Intelence and 3TC (this was the only drug in this class I hadn't had before and to get off D4T). I am amazed to hear about all the issues you and the others on this site are faced with in accessing medical care and treatment.
I have seen the movie Sicko by Michael Moore but did not think the HIV field was so badly affected. I cannot imagine being an LTS and dealing with these issues! I have to take off my hat to you all as I feel your situation is a lot worse than ours here in the UK or indeed in Australia where my younger gay HIV+ brother lives. I will follow your posts with interest and send you all my love and support from the UK  and hope that whatever your situation is it gets resolved asap!

Offline deibster

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Re: Forced to Change Doctors (again)
« Reply #17 on: February 06, 2010, 11:47:32 PM »
Hello Rob;
I have not had the doctor problems that these other members have had. I lived & worked in New Jersey. I went to the same doctor in New York City for 10 years; he was both my primary physician and hiv doc. He took my insurance and later Medicare when I got disability.
In 2006, I moved to Provincetown, Cape Cod, Massachusetts. There is a clinic here that takes all kinds of private & government insurance. I've had different primary doctors at the clinic, but I only see them once a year for a physical. I've had the same hiv doc the whole time; I see him 4 times/year. He comes about 4 days a month from Beth Israel in Boston & is a very good infectious disease doctor. I have a Medicare prescription drug plan & it pays for my drugs no matter what doc prescribes them. Hugs, deibster
Poz since Dec 1992. Meds since 1995. Disability since 2005.

Prezista/Norvir, Epzicom, Cytomel, Prevacid, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, doxazosin, Allegra180, Nasocort, Centrum, Flax Oil, Fish Oil

Offline robsurmer

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Re: Forced to Change Doctors (again)
« Reply #18 on: February 08, 2010, 07:03:40 AM »
That is great to hear-all is not lost in the great US of A!!! :) It would seem that the US is a little like the UK in the sense that when you get away from the larger cities and centres with large gay populations things are very different- my town Brighton is like the San Francisco of England although not as big, it has a very large gay population so therefore more services and support. It is only one hour south of London on the south-east coast of England and attracts top calibre doctors and consultants in the HIV field- we also have a medical university here which helps a lot too. I would imagine that service in Scotland or Wales would be very different from those we enjoy in Brighton, even if they still don't have to pay, the local Primary care trust (the governing body for funding and services in each area in the UK) may not approve paying for some things in a similar way to HMO's in the US. We call this a 'postcode lottery' and some people have moved to Brighton from regional centres for this reason. I myself originally moved here in 1992 to avoid the stigma of HIV that was prevalent then more than funding issues, but it turned out to be a smart move as Brighton is a centre for new drug research and gets new drugs even before London on occasion. Anyway
once again great to hear you have no probs where you are-take care-Rob

Offline Theyer

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Re: Forced to Change Doctors (again)
« Reply #19 on: February 09, 2010, 12:07:54 PM »
Hello Joel,

Sorry to hear your news, and I hope you find a Good Doc

I am left wondering how many patients are in your position--did your Doc have any suggestions for you?

Anyway good luck

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

Offline bear60

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Re: Forced to Change Doctors (again)
« Reply #20 on: February 09, 2010, 12:20:08 PM »
Theyer...
Thanks for your reply.  Oh yes, my present doctor had a very good suggestion:  a new doctor will be joining the office where she works and will probably be my new doctor.  He sounds good...he is middle aged and gay.  Good start for me.
The problem is that I have to have a primary physician AND an ID doc because I need a referral to go to any specialist...whether its an Orthopedic doc or a Ear, Nose and Throat specialist, an Eye doc, a Cardiologist or whatever.  These referrals all originate at my primary physicians office.  Thats life in an HMO..and medicare.  Being over 65 I am on Medicare and have Keystone 65 ( Blue Cross Blue Shield) supplemental insurance.  I cant walk into a doctors office other than my primary physician without a referral ...or I pay for the visit.
I just resent the fact that my present doctor will not keep me on as a patient.  In fact she may keep my life partner on as a patient....pro bono...at no charge.

Joel
Poz Bear Type in Philadelphia

Offline leatherman

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Re: Forced to Change Doctors (again)
« Reply #21 on: February 09, 2010, 12:33:22 PM »
I just resent the fact that my present doctor will not keep me on as a patient.  In fact she may keep my life partner on as a patient....pro bono...at no charge.
how come the difference? Was she his doctor first or something??
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline aztecan

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Re: Forced to Change Doctors (again)
« Reply #22 on: February 09, 2010, 02:17:59 PM »
...
The problem is that I have to have a primary physician AND an ID doc because I need a referral to go to any specialist....  I cant walk into a doctors office other than my primary physician without a referral ...or I pay for the visit.
I just resent the fact that my present doctor will not keep me on as a patient.  In fact she may keep my life partner on as a patient....pro bono...at no charge.

Joel

I am also curious why the doctor will keep your partner, but not you.
Beyond that, is the new doctor, whom you said you would probably see, going to be your PCP, or will you need another PCP to see him?

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline bear60

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Re: Forced to Change Doctors (again)
« Reply #23 on: February 09, 2010, 03:02:09 PM »
"how come the difference? Was she his doctor first or something??""  quote

Yes, she was Kurts doctor first ..........before he and I became involved.
...
Mark...
The new doctor would be my PCP. He will refer me to other specialists.

Joel
Poz Bear Type in Philadelphia

Offline Still_Here4Now

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Re: Forced to Change Doctors (again)
« Reply #24 on: April 27, 2010, 03:27:31 PM »
Hi! Sorry to hear about your doc! Me on the other hand had a great doctor that I got when I was going thru colon cancer in 04. He chose to scale down his practice and well I was scaled out. Lol! I have been rying to find a HIV Doctor and it has been hell. I also tried to do what the systems says and get primary . Yeah right and now I have bad debts on my credit score. I owe them money even as they said it would cost me nothing.
Well any way one of the HIV doc's I went too is more of a dog daycare. His nurses bring their dogs to work and when you walk up to the window to sign in you can see them walking around and such. I also had the problem of him NOT listening to my problems. Then I went to another and well I was ready to kick his ass. He told me that he never had a patience come in and demand this or that. I asked him about some blood test and he said no I will not order them. As well he would not give me the scrips I asked him to write. He said he was not comfortable writing scrips for boost and massages. Yeah they help the noropothy. Well I changed doctors again. IT is a shame that doctors in every area do not listen to the one whom they are treating. I have lived in this body for 47 yrs and I know it better then any Doctor int he world. I can tell you what hurts and why. I know when a migraine is going to hit as well as when a certain part of my back hurt that I will have to find a bathroom with in 15 Min's. I can tell by the pain in my feet that I should not eat for an hour cause I will get to see it all come right back up.
Doctor's need to care more.

 


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