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acriado
Newbie

Reged: 03/13/06
Posts: 1
Loc: Deltona, FL
Time to find a new doctor?
      #227339 - 05/28/07 06:40 PM

At a recent visit with my HIV specialist (he is AAHM accredited) I became very upset over certain things he told me regarding my ability to continue receiving SSDI benefits. He told me that Social Security had removed HIV as a disability and that if my SSDI was based on HIV I might just lose my benefits at any moment.
I was stunned and at a loss for words to hear this news. I only see my HIV doctor every 5-6 months over a period of 6 years. I get the impression he really does not know me as a person or how living with HIV/AIDS disease and medication side effects really impact me and my ability to live a "normal" life.
The Social Security Administrative Law Judge who found in my favor stated that I was disabled due to HIV/AIDS, the major side effects from medications as well as major depression, anxiety disorder and bipolar disorder. This was 3 years ago. I was given a SSA review category of MINE (Medical Improvement Not Expected).
I called my Ryan White case manager to ask her opinion. She told me she had not heard anything like that.
I read my HIV doc's statement to mean that he doesn't think I am disabled.
Is it time for me to find a new specialist?

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James1941
All Star

Reged: 12/05/06
Posts: 97
Loc: Victoria, Australia
Re: Time to find a new doctor? new
      #227347 - 05/28/07 08:07 PM

Yes, it is definitely time to find a new doctor.

Just because he is 'AAHM accredited' that does not guarantee he knows anything about HIV.

You only see him every 5-6 months? My understanding of current best-practice - should be a minimum of every 3 months, possibly more frequently depending on the individual, too much can happen in 6 months.

James

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Time to find a new doctor? new
      #227352 - 05/28/07 09:39 PM

What the hell is AAHM "American Association for the History of Medicine??" You know I stick with a ID Specialist and someone who has a very long track record dealing with the welfare of his/her patients. Including the representation of his/her patients in goverment dealings. Get the hell out of your current relationship with your current "Doctor." Specialists only and I also concur that 5 to 6 months is pushing it when it comes down to a potential down the road treatment failure or other metabolic change in a hiv/aids patient..

Hugs,


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Angel_Ronnie
Guru

Reged: 06/01/06
Posts: 256
Loc: Gauteng, South Africa
Re: Time to find a new doctor? new
      #227667 - 06/04/07 04:23 AM

Picking a Provider

By Jerome Ernst, M.D.

Winter 2006/2007

Choosing a good health care provider, be it physician, nurse practitioner, or physician assistant, is a complicated process that can leave people unhappy and frustrated. But finding a good provider is important. Here are some observations on how you can increase your chances of finding the right clinician for you.

The first problem people encounter is that not all providers are the right match for them. If personalities clash, the same language isn't spoken, or a basic incompatibility exists, neither the patient nor the clinician will benefit from continuing the relationship. Some doctors act as if they know everything, even if they may not. For some patients this is reassuring; for others it is disturbing. Other providers are more tentative and hesitant, and their patients prefer this style. Some patients require their providers to be of the same sex, some the opposite. Some providers are biased against certain groups and are not comfortable working with them. These problems must be recognized at the beginning of the relationship and either addressed successfully or the relationship ended.

For patients with chronic diseases, especially HIV and AIDS, the course of their disease can be profoundly affected by their relationship with their provider. People who have a good relationship with their provider usually do better clinically. It's hard to discuss personal health matters with anyone, let alone a provider whom you do not trust or respect. Hiding important personal health issues from one's provider is not the best way to a healthy life. The right provider can be reassuring and supportive, even if there is not a readily available solution to the current clinical problem. This support is very important in reducing the patient's stress and by itself can improve one's health and well being.

In addition to the patient-provider relationship, there are other important factors to be aware of in choosing a good provider:



Knowledge
Smarts is important. Certainly, one wants a provider who is up to date on the latest medical knowledge. New antiretroviral drugs require clinicians to constantly refresh their knowledge of these agents. Knowing when to use newer drugs, what side effects to look out for, and what drug interactions could occur are matters that good clinicians consider when starting or changing a regimen.

Knowing the various symptoms of HIV disease is equally important. A cough may mean entirely different things depending on your CD4 count. Not every cough requires a chest X-ray or CT scan. Knowing when to act is part of the art being a good clinician. Of course, how much HIV experience your provider has is not always apparent. But if your provider is board certified in infectious diseases, s/he probably has a lot of HIV experience. Primary care physicians with large HIV practices also have lots of experience. Most providers attend refresher courses, lectures, or national or international meetings -- ask what your provider does to keep up. Physician assistants and nurse practitioners have some link to physicians -- ask if yours does, who the physician is, and what his or her qualifications are. PAs and NPs are not doctors but often provide care equal to the best physicians.

Medical knowledge of illnesses other than HIV is more and more relevant for today's HIV population. As people are living longer with HIV, they are experiencing the common diseases of aging that people with HIV in the past may not have lived to worry about. HIV providers may not have a lot of experience treating the common ailments of an aging population such as high blood pressure, diabetes, arthritis, chronic lung disease, coronary artery disease, and the like. When choosing a provider, look for one who either treats both HIV-infected and uninfected patients or has experience with the common primary care ailments. Do not hesitate to ask what their experience is at your first meeting.



Communication
Smarts alone aren't enough. The clinician needs to be able to talk to the patient in a way that helps the patient understand what is happening. The patient needs to be understood and helped to feel better. To do this the clinician needs to have a good bedside manner. And not everyone does. For me, this aspect of the clinician is most important. But a good bedside manner without good clinical knowledge and skills is no good either. Being falsely reassured and comforted does not lead to good outcomes.

HIV disease can be devastating. Patient-provider encounters from the first to the last often deal with life-altering events. The provider needs to be able to impart information to the patient in ways that are understood. Frequently, this must be done repeatedly because the patient is not able to grasp the information the first, second, or even third time. So the patient needs a provider who can and will do this.

I frequently tell my patients to write down all their questions before our meeting. Then we discuss as many of them as time allows. If more time is needed and there is no one waiting, we will continue as long as we can. If there isn't enough time on this particular day, I'll schedule another visit within a couple of weeks. I find that having the patient bring a list of questions is the best way to make sure the stress of the meeting doesn't result in important issues being forgotten.



Access
The patient also needs to be assured that the clinician can always be reached in times of need. Phone calls should be returned the same day. What to do in an emergency needs to be discussed. Most providers have colleagues who cover for them on evenings and weekends. The day of the solitary family doctor who was available all the time is gone -- you need to know whom you will talk to when your provider is unavailable.



Hospital Care
If you need to be hospitalized, will your provider be the one taking care of you? Ask what hospital your provider is affiliated with. Do you like that hospital? If you end up in another hospital, who will take care of you? If your provider does not follow patients if they are admitted to the hospital, who does? Are you happy with that arrangement?

In my experience, the quality of the hospital matters less than that of the physician taking care of you in that hospital. Of course, if you can have a nice clean hospital with good nurses and competent and polite staff in addition to a good doctor, you are better off. Such a magic combination, however, may be hard to find.



Office Staff
You also need to consider your provider's office arrangements. How nice and competent is the staff? Do they treat you with respect? If they call you by your first name is that okay with you? Do they telephone you the day before to remind you of your appointment? If you or your provider has to cancel, is it easy to get another appointment? Is the office clean? Is blood for lab tests drawn at the office, or are you sent across town? Does staff arrange referral appointments for you, or must you do this yourself? Do they make you feel comfortable, or do you feel as if you are disturbing them? Remember, you are the patient; they are being paid to help you.



Your Role
There are several things that you need to do to ensure the success of your encounter with the medical establishment. Learn as much as you can about your disease. At a minimum, you should be familiar with basic information about HIV, how it affects the body, how one can get it, what happens if it is not treated, and what treatments exist. ACRIA and other organizations can help you with this, either on the internet or through publications and educational sessions.

Know your own medical history: when and how you were infected (if possible), what HIV drugs you have taken, what your highest and lowest CD4 counts and viral loads are and what vaccinations you have had. This information is probably best kept in a notebook with copies of lab results, hospital discharge summaries if any, lists of medications you have taken, and any side effects you may have had. You should know how to prevent your HIV from spreading to others. And this is just the HIV-specific information you need. It's also good to know your blood lipid levels, liver function tests, mammogram results if you are a woman over 40, TB test results, etc. The best way to do this is to ask for a copy of each lab test when you get it done, and to keep them all in one place. That way you have a complete record of your history even if you change providers.

All of this sounds very complicated and labor intense. Some people do all the items mentioned above, some do a few of them -- it's up to you. But finding a provider who takes your life as seriously as you do and then taking the steps above will go a long way to making your life as healthy and as long as possible.

Jerome Ernst is ACRIA's Medical Director.

--------------------
"Live for today, because what you do today is what you use to make your future"

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MUSCLEMAN
Member

Reged: 07/14/07
Posts: 11
Re: Time to find a new doctor? new
      #228802 - 07/19/07 09:15 AM

Change the doctor. You need people to help you, not to destroy you

--------------------
Bodybuilder, Powerlifter and Weighlifter

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