Scared Single Dad Again
Mar 29, 2008
I hope your Easter weekend was a pleasant one, and thank you for answering my questions on a holiday weekend. I am continuing to read the countless posts and articles on this website while trying not to become overwhelmed. Since my last post I decided to go to the hospital and have my throat and rash looked at and was taken off of the Nyastatin and given fourteen 150 mg Fluconazole tablets to take once a day over the next two weeks. I was also prescribed Triamcinolone Acetonide Cream to keep my rash in check until I can see an HIV specialist. I was treated very well, but was blown away after reading several posts where people have asked you about the care they have received from their doctors. Ive always believed that all doctors want to help their patients, but I also know that not all doctors are created equal which leads me to the reason for my new post.
The hospital I went to over the weekend is the same hospital I was referred to by my primary care physician. I am taking your advice as well as the advice of the attending physician at the ER and calling back in the morning to see if I can get my appointment moved up. However, my concern is that I live in eastern North Carolina and will be receiving my care at Pitt Memorial Hospital which is apart of East Carolina University. I know that you are in California but was curious to know if this an established facility in regards to HIV treatment or would it be in my best interest to look at a facility further away in Raleigh or beyond? I want to maintain the balance between receiving the best care but at the most convenient place possible.
Thank you for all that you do,
Lewis aka Scared Single Dad
Response from Dr. Frascino
I would strongly recommend you seek and establish care with a certified, competent and compassionate HIV/AIDS specialist. I don't have any personal friends or colleagues practicing in your area; however, that doesn't mean there aren't excellent HIV specialists near you. I would suggest you check the American Academy of HIV Medicine's Web site at www.aahivm.org. They have a roster of HIV specialists listed by locale. I'll repost below some information from the archives discussing how to choose an HIV specialist.
Good luck Lewis.
Is my dr. up to par? Mar 24, 2008
Dr.Frascino, Two yrs. ago I was dignosed with AIDS I began tx with the Ohio State Universtity clinical trials unit..my main concern here is that I have only seen my Dr. on twice when I first began the program. At that time he did a brief history, went over my labs with me briefly, and did a quick head-to-toe assessement. On the second visit which was at the end of my first yr. in tx. he did more or less the same but this time he did a sensation test asked if I had any questions and left the room. I get labs every 3mts. and thankfully I have responded well to medication most of my visit our spent with the nurse. Is there more my Dr. should be doing? (more visits, x-rays,MRIs,more test) Maybe Iam overreacting but I want to be sure he and Iam doing everything possible to keep me healthy for as long as possible.
Response from Dr. Frascino
Seeing your HIV specialist twice in two years does not sound like optimal care to me! I'm sure the nurses do a fine job, but nurses are not physicians and shouldn't be used as such! I don't think additional tests (x-rays, MRIs, blood tests, etc.) are necessarily warranted, but the HIV specialist should be thoroughly reviewing your laboratory tests and performing interval physical examinations on you. In addition he should be there to respond to any questions you may have and discuss various treatment options, new therapies, etc. Have you considered seeing an HIV specialist in private practice in your area? You might find more satisfaction and physician involvement in that setting. You could retain your association with the medical center for a second opinion if needed. The American Academy of HIV Medicine's Web site, www.aahivm.org, has a roster of HIV specialists listed by locale, in case you need assistance in locating HIV specialists in your area. I'll reprint some information from the archives below about choosing an HIV physician.
Choosing an HIV Care Provider
July 18, 2007
Why Is Choosing an HIV Care Provider Important?
Treating HIV disease is very complicated. There are choices to consider at every stage of the disease. It's best if you and your health care provider work together as a team. That makes it easier to choose and stick to your treatment plan. "Care provider" means a doctor, a physician's assistant, or a nurse practitioner.
There are several issues you may want to consider in choosing an HIV care provider. You might decide to have them be your "regular doctor" for all of your health issues. You might use a different care provider for most health issues and use your HIV provider as a specialist. If your regular provider isn't an HIV specialist, be sure they regularly get expert advice on HIV issues.
Training and Experience
Many people with HIV/AIDS get their care from physicians who are specialists in infectious diseases. However, especially now that people are living longer with HIV, it's important to deal with all of your health issues. You might prefer to have a family practitioner or a specialist in internal medicine as your primary physician.
No matter what their specialty, you will get better HIV care from providers who have experience treating people at all stages of HIV disease. Be sure to ask how many patients with HIV they have treated, and how many they currently see. HIV patients do better when their physicians have more experience treating HIV disease.
Do You Have Similar Ideas About Treating HIV?
Some providers are conservative. They prefer "tried and true" methods. Others are more aggressive. They are willing to try new and experimental treatments. Some are optimistic by nature, and focus on the hopeful or positive side when they talk about test results or future prospects. Others are more realistic. Some are pessimistic.
Some providers are comfortable suggesting "complementary and alternative" therapies such as massage, acupuncture, or herbs. Others stick strictly to Western medicine.
If you want a lot of emotional support, you probably won't be comfortable with a health care provider who only talks about test results. The more comfortable you are with their approach to HIV treatments, the easier it will be for you to get the kind of health care you want. Talk to providers and their patients before you make your choice.
The Provider-Patient Relationship
Many patients do better when they take an active role in planning their own health care. These patients do a lot of reading on their own, and bring information to their providers. They work together to make health care decisions.
Other patients are more comfortable with the provider making important decisions. Decide how you want to work with your provider. See if that fits with the way the provider likes to work with patients.
Help Your Provider Help You
Make sure that your provider has all the information needed to give the best advice about your treatment. This starts with your medical records, which may have to be transferred from another office. When you start working with a new provider, they will probably do a lot of tests to collect "baseline" information. This helps you see how well you're doing as time goes by.
Be sure your provider knows how you feel about using medications, and about your illness. Some people don't mind taking a lot of pills. Other people would rather take as few as possible. Are you willing to change your diet, or the amnount of exercise you do? Your provider should also know about other treatments you are using or want to try, including non-medical ones.
Be honest about your lifestyle. Your eating, sleeping, and work patterns can make a difference for your health care. So can your sexual practices and use of recreational drugs. If your provider seems too judgmental, try to change providers. It's better to have a provider who really knows you instead of holding back information.
Let your provider know about the important people in your life: the people who will support you if you get sick, or will help you make important medical decisions.
The best care provider won't do you any good if you can't get in to see them. Ask them (or their receptionist) how long it usually takes to get an appointment. Find out how well they usually stay on schedule during the day.
The type of insurance you have could limit your choice of a provider. Maybe the provider isn't on the list for your health maintenance organization (HMO) or insurance plan. Be sure to find out how you will be able to pay for their services.
Remember, you don't need an HIV specialist to help you with most of your health care needs. If a good HIV provider is hard to find, or if it's hard to get an appointment, use a non-HIV care provider for your general health care. Just be sure that when you are dealing with HIV issues, you see an experienced HIV provider, or one who consults with an expert in HIV.
Some people are very concerned about keeping their HIV status private. You might choose to get your HIV care from a provider in another town to protect your privacy. You will need to find your own balance between confidentiality and convenience.
Your health care needs might change as time goes by. Also, your ideas about treatment could change. Although you will probably get better medical care from a provider who has known you for a long time, you always have the right to stop seeing one provider and change to another.
To Find a Health Care Provider ...
You can get help finding a care provider from your case manager or from your local Department of Health. You can also ask other people living with HIV. The American Academy of HIV Medicine has a web page to help you find a doctor at http://aahivm.org/web/index.php?option= com_comprofiler&task=usersList. The HIV Medicine Association has a similar resource at www.idsociety.org/HIVMA_Template.cfm? Section=Find_a_Provider_in_Your_Area.
The Bottom Line
HIV medical care is very complicated, and changes quickly. This makes it important to find an HIV care provider who works with HIV/AIDS patients and is committed to staying up to date. Your relationship with an HIV provider will be better if you are comfortable with each other's personal style and approach to dealing with health issues in general, and HIV in particular.
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