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hivhelp
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Asking Questions of Doctor
#228958 - 07/27/07 11:16 AM
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Asking Doctor Questions
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A month ago my 19 year-old brother-in-law (Bryan) told us (my husband and I) that he is HIV positive and has been for a year. He had stopped going to the doctor after the first couple of appointments, but, of course, we have helped him change his mind about that.
Next week, I am going with Bryan to the doctor to hear about his lab results, etc. My role on Bryan's "support team" is two-fold: 1. Informative. I have been paying attention to HIV since Ryan White and am knowledgeable. Most of the people in Bryan's family do not have much education or know much about it (nor do they want to), so I am helping Bryan understand the information he gets about his HIV.
2. Since I am attorney, it is also my role to make sure Bryan is getting the best care and is not just another number. Bryan is 19, poor, black, and gay- I think there is a risk that health care providers may not make him a top priority. I am watching out.
My questions:
1. What should I ask, or what should Bryan ask, at the doctor? Bryan did not ask many questions on his first visit and didn't even know what CD4 cells are or what the lab numbers mean. What kinds of things are good to ask your doctor during the first visits?
2. What are some signs of "top notch" care? Bryan's doctor is the only HIV specialist in town, but he may have more options in the future if he relocates. Are there special things to watch for?
3. I do not intend to intimidate Bryan's doctor or pretend like I know better. Bryan's doctor may be the best in the state for all I know (he checks out well online). Any advice on how to make it clear to the doctor that I am not there to threaten or scare, but as a support and resource for Bryan- we want the best for him.
Thank you so much for your help and for this forum.
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My doctor loves it when I bring along somone, and she is the best in the state. Take a pen and notebook, to write down viral load, CD4 numbers and percentages. Also, if Bryan has any thing that needs to be discussed with the doctor, such as other STD's they are common amoung us HIV's that are not in committed relationships. We are more prone to them due to our immunity deficiency. I am sure they will check him on all that, also, ask about vitamins that would be helpful. Good luck and let us know. D
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hivhelp
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Thank you very much. Those are good suggestions and I will be sure to reply about how it went.
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sunflower
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Grand Master
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How great that he has someone to lean on and be supported by - I would listen to see if the Dr is update in his knowledge - ask if he/she goes to HIV related conferences and keeps up with the new drugs, recommended start of treatment, etc.
Get your brother-in-law to read some of the stuff here at The Body and at Aids Support centers - they usually have magazine for HIV+ people that are up to date with info.
best of luck to both of you!
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Focus on your potential.
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to set my mind at ease, i did a little internet research in my doctor online. researched the schools he went to, asked him some personal questions. "why infectious disease? what do you hope to accomplish in helping me?" i made sure he rememembered my name when i went in there. that he recognized my face. i gave him more information about me so he realized that i was a person, not a patient in his practice. i'm not just a number. i share quick little storis about me. i let him know that i have friends and family that depend on HIM to help ME stick around. i'm not just a number. i let him know what i expected from him. for me, i let him know that i needed him to bottom line things for me. tell me what i have to do, good or bad. i reminded him that if i died, it just meant he wasn't doing everything he could do to keep me healthy, he went to medical school, he goes to seminars, he has a responsibility to me. i might have messed up, but i depend on him. ask questions. no matter how sill they may seem, it's his job to answer them. sometimes it's hard to ask about very personal things, but i'm certain it's nothing he hasn't heard before... and if he hadn't, well, i paved the way for the next person. it's a continual learning process, everyday has some sort of new question or dilemma. the 1st year or so i would write down my questions as i thought of them, and when i went in for my labs or follow up i would hand him the sheet of paper & he would go down, question by question & answer then for me. seemed easier than having to say some of the stuff that was too personal out loud. i also keep track of what tests are run & when. CBC, cholesterol, STD screenings, urine checks. i make him talk to me like i'm a person. i also talk to the nurses. ask them what he's been up to. has he gone away recently to any confrences/seminars. has been been on a lot of vacations, is he in the office most of the time. how old is the oldest HIV+ patient he has & how long has he been treating him. suffice it to say, when i call the office & my number shows on the caller ID, they answer the phone, "Hi Jen!" i realize not everyone has the availability of many doctors to chose from, but your brother in law can always be more than a number. he's a person, a person who needs help. sometimes the Almighty Doctor needs to be reminded that medicine is about helping people, not treating who's behind chart/door #2. sorry this kinda rambled on, i hope it helped a little bit.
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hivhelp
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Thank you for your comments! I agree- with any doctor it is so important they have a personal relationship with the patient. Bryan can't just be a person with a 400 CD4 count and a viral load of 16000. He's got a lot of potential and his whole life ahead of him.
Thanks!
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hivhelp
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Thank you for your comments! You certainly are right- the HIV pos magazines are helpful. This website is great, too. I especially enjoy the monthly podcasts- I've learned so much. I am concerned about when and if Bryan should start therapy- there seems to be quite a debate. That is definately something to explore further with the doctor. Thanks again.
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AMEN! when i was diagnosed my CD4 wes 235 & my VL was 80,000... it was bad. missed 6 weeks of work, had no energy, i finally ended up in the ER & had no idea i was positive. never would have guessed it, had no knowledge of HIV.. and knew no one who was HIV+. now my CD4 is 570 & my VL is undetectable... i've been hovering around those numbers for about a year and a half now. one minor blip a little while ago, scared the crap outta me. but having a more personal relationship with my ID helped.. he saw i was scared & related to me as a person, not a patient. i imagine it takes friends & family a minute to adjust to the situation too... my best advice, don't try to relate, because you can't (not to sound rude) but just listen. that's the best things everyone has done for me. don't treat him like he's "a sick person" because that makes it scarier. the internet cn be your best friend, or your worst enemy. sometimes you have to step away from all the iformation, and let him live life. there really is life after an HIV diagnosis, albeit a different approach, but it's still life.
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Survivor
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Legend
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Do you happen to know what Bryan's current cd4 count (400), viral load (16000) and cd4/cd8 percentage?? Those three are key indicators as to how his virus is behaving in his body. If he has any other tests so far please post as well. Question on any Geno/Pheno tests being done yet to reflect any resistance he may have to future meds would be helpful. Approx time of infection if he knows... Testing is usually over time (trended 3 months) this gives the doctor a true sence of how the virus is progressing. A cd4 count of 400 and vl of 16,000 (with those two values) Bryan has some time before meds will ever be considered if his doctor follow typical guidelines for arv's...
Glad your helping him along...
Eric
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hivhelp
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Thank you for your reply. His appointment with the doctor is on Tuesday, so hopefully there will be more numbers. He was infected one year ago. In November, his CD4 count was 494, his CD4% was 39, and his viral load was about 16,500. He will see what happens Tuesday. Thanks for your help.
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hivhelp
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Thanks for the reply. We went to his appointment and the doctor was very supportive of my presence and helpful. I was impressed. Bryan's viral load went from 16,500 in Nov. to 4900 in July, but his CD4 count dropped from 494 to 424. The doctor continued to recommend no meds, consistent with the guidelines, but wants Bryan to return in Oct. for more counts. I agree. Bryan and I also had the doctor approve a Patient Waiver of Confidential Health Information, so that I can talk with him over the phone, should Bryan want me to. He is supposed to be taking his vitamins, but I know he does that irregularly. He also should be exercising and eating healthy, but I know that doesn't happen either.
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TRex
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Brian is very lucky to have you. Yayyyy for family support. I will suggest things as a registered nurse who is HIV positive. What to expect for the doctor? If you are perceptive you will pick up the "quality" in the physician. Look for how well they explain things to you and Brian. Listen to how patient he/she is about answering questions and volunteering information. If you don't understand something; ask. No question is too small..if the MD is knowledgable and concerned they will take the time to address any questions. Have Brian write down his concerns before the appointment and bring it. He will inevitably forget something he really wanted to ask if you don't. Most of all, with your help, Brian should be his own health care advocate. Asking questions is a good way to start and asking for explanations for anything that is fuzzy. Ask for copies of labwork. I keep an excel chart of all my labs in sequential dates. If Brian ever switches doctors this is a great way to see the whole picture without flipping through pages of labs. Keep a log of visits to jot down what the doctor said or questions he answered. Good reference for Brian and helpful for the doctor for the future. Most of all keep the appointments, take the meds if indicated, and keep a positive outlook. This is a new day and age. I had my "coming out" not too long ago (I've only known about my HIV since Nov 06). I don't tell everyone but the people I have told are still my friends and are non judgemental. We still share our M&M's out of the same bag and they eat things I bring to the potluck. It shouldn't matter what age, race, or culture he is. He is a human being that needs support of family and friends AND good healthcare. He is lucky to have you and you him. Tell him its ok to feel sad and scared sometime..but then pick up and live life!! Take care Bernardine (Bernie)
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TRex
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Emotional health is just as important as physical health. Is there a local HIV/AIDS Service organization? Many of them are funded by Ryan White funds and have counseling (private or group) available. Certainly doesn't hurt to stop in.
Bryan.....you have great help but remember help yourself too. You always have support here on TheBody. (((: Bernardine
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