POZ Community Forums
Main Forums => Living With HIV => Topic started by: toplad on July 20, 2007, 07:29:13 am
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Hi
Just wanted to share the latest visit to my HIV consultant who I have been with since testing positive last year in August. My numbers have never really been high and I was told to keep a close eye and to start thinking about preparing myself to go on meds at some point sooner rather than later. In one of my previous posts I referred to the fact that I felt my consultant was not proactive enough in his approach – well yesterday just brought it all back home – so much so I am moving to a different hospital as I have lost all faith in him.
Here goes: I always get my results via telephone a week or so before seeing my doctor so I can prepare and write down any questions or concerns I might have (brilliant advice given to me here on Aidsmeds). I arrived yesterday for my appointment and my doctor greeted me, sat down, opened my file and showed me a summary of my results which he had written down and proceeded to say they were relatively ok. I checked his numbers and yes, that’s right, he had one of my CD4’s as being a lot higher than it was. After pointing this out, and showing HIM on HIS computer screen where the correct result is, he merely moved on to ask me the blunt question “so have you had any more though on going onto treatment”. No apologies, no lets review your numbers, nothing. I don’t know if it was for show in front of a foreign doctor who was sitting in on the consultation (whom I was introduced to but never asked if I was ok with him being there). This one result might seem a bit trivial but it is a deciding indicator as the incorrect result falls on the “wait before you go on meds side” and the correct one is “start considering meds side”. In answer to his question I suggested we go through all the questions I had written down and perhaps that would shed some light. This turned out to be tedious and felt like drawing blood out of a stone. There was no forthcoming approach, no interest in discussing things, just waiting for me to ask and him to answer. His answers at best, were mediocre in their accurateness in answering my query.
I then moved on to talk to him about potential indicators of my immune system being more damaged. He went through a few things with me, one suggestion being I should look out for Oral Hair Leukoplakia. I said I do sometimes suffer from similar oral infections and he said he would examine my mouth before the end of the consultation. He mentioned prescribing me an inhaler as well to help with allergies I have. After a few more questions and talk he said right then, if that’s it, then I could go!!!! I had to remind him to right out the prescription for the inhaler. When he had done this he said, right, if you hurry you can still get to the pharmacy before closing time. I then had to remind him that he was to examine my mouth. Oh yeah, he said nonchalantly. I responded should I see him in about 3 or 4 months time – his response – yeah around there, or sooner if I like.
I left feeling totally deflated. What gets me is that the whole course of the consultation, if I had not picked up on his errors, would have been based on a set of incorrect results, the nature of which being of decision making importance. He was totally apathetic and if I had not been on-top of things and pro-active, I would not have got the answers to my questions, not have picked up on his errors and be a lot worse off. My appointment was for an hour. Was out of there within 30 minutes!
Thanks for letting me vent. To me this whole episode just shows that it is best to be educated, knowledgeable and pro-active about ones health.
Good health to you all.
Toplad
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Well, if this is supposed to pass for standard of care then God help us all! Do make the change - not all consultants are as unprofessional and disinterested as he plainly is. You might also want to consider letting the trust know about this guy so that other patients can be spared this kind of nonsense.
So what was your numbers like this time? Were these the results from 01/06/2007? If so, it strikes you have a good CD4%...
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Hey Keyite
Yep, have written a letter to the trust informing them of this. Unfortunately a lot of the people I have come into contact with within the trust have this apathetic approach.
My latest results are:
CD 4: 400 (up 70) :-)
Viral: 7600 (up 600)
CD4%: 24.5 (down 4.5) :-(
Have a good weekend.
G
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My numbers are pretty similar, except my VL is much more of an untamed beast. Even though your numbers actually have been very stable over the past year and your VL mostly very well contained you've obviously been prompted more than once about going onto meds.
In contrast, I've had initial discussions about meds with my consultant (mostly prompted by me) but she's has been quite clear that she sees no need to initiate meds just yet. Unless I really want to, that is.
Interesting just how different the advice can be...
Which trust have you been using so far?
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I feel that I have been having a similar experience. Earlier this year I experienced erroneous test results. The docs don't seem to care... I sense no urgency and little understanding of my situation. I find it frustrating.
If you have good health insurance, I would say you should seek out HIV specialists with more concern...
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Toplad,
I do hope that you'll find a different doctor soon. The mistakes that consultant made are fireable offenses in my book.
It is common courtesy for a doctor to ask the patient if it's OK for another person to observe during your appointment. And you should not have to constantly look over your doctor's shoulder to make sure he's not making mistakes. It's a good thing that you were able to catch his mistakes.
It went through several doctors before finding one whom I trust and feel comfortable with.
Keep on taking an active role in your own treatment. And that's true even after you find a doctor you trust.
Good luck.
Allan
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Get a new doc!!!
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Unfortunately a good doctor is hard to find. It took me finding mine at my ASO and found my primary through him. And since they have worked together in the past, they don't have a problem communicating. I think you should definitely find another doctor and when you do explain to him/her that you will come to appointments with questions..Explain that you are very proactive about your health...But don't give up, they are out there.
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I have been introduced to Interns who were training with my doc, before they move to Africa. I was always asked and always included the visitor in conversation re: my health. I have been asked by the Medical Information Officer (during intake), if a new hire member of his staff sit in. In this case she was doing outreach work with the hispanic community. I have always been asked.
Get a new doctor. I had the first 4 years w/AIDS getting the best care, the second 4 years, with the worst, and the past 3 years with the best care. Over the last 3 years, I have improved numbers and PN is slowly healing. Have the best day
Michael
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Certainly there must be many, many better doctors available in London, toplad
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I agree with others - get a new doc. I've been lucky with my ID docs and trust my current one with my life (literally), but have had some other docs through the years (specialists mostly) who I saw once or twice and never went back.
:)
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I've had a similar experience with a new doctor and managed to trade her in for the head of the department, good riddance! I haven't met him yet but anyone'll be better basically. By all means try to change or if not possible, at least mention to him next time that it makes you anxious when you feel that the doctor is not paying attention and use the 2 examples. Maybe it was a slipup due to a bad day and maybe it's a habit!
Good luck with it!
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The relatioship that one who has HIV has with his doctor is an important one. Just as you wouldn't continue to date someone that weren't hitting it off with - you shouldn't stay with a doctor that you don't feel is a match for you.
Good luck with the search.
~ronnie
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Yes, advocating for yourself is the best thing you can do regardless of what disease you are fighting, because they will let things get worse, especially in the HMO arena. Doctors are well aware of who is a pushover and who has done their homework on their disease.
I find that the length of my appointment depends on what issues I bring to the table, and I find that I must often insist on tests that they don\'t want to run, and I have to stick to my guns to get things looked into. It is very much true that the squeaky wheel gets the oil nowadays. One of the tests that I often have to insist on is my hemoglobin which is erratic. This is how they decided to band my roids, because my doc finally got sick of me complaining at every visit, and the data didn\'t lie.
If I had been passive, I would still be suffering more from these buggers. So yes you must be your own advocate. Unfortunately, the doctors that are on ball are few and far between, and we often have to work with the doctor we are given and train them on how to meet our health needs. This requires always communicating and making sure our concerns are addressed, sometimes being a thorn on their sides, when our quality of life is at risk.
CA
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I think that this points out the necessity of being an active partner in your own care. Your doctor is only part of the equation.
But I'd be hard-pressed to think of many docs I've had over the last eleven years who weren't arrogant asses, especially the Infectious Disease specialists. It kinda goes with the territory.
Brent
(Who will confront anyone whom he feels is being insensitive)
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Yes, Brent you are right. Most of the ID docs work in teaching hospitals affiliated with Universities and big research grants. Academia is full of big heads - the doctors among them are often times never an exception.
~ronnie
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Let me qualify: when I was lucky enough to have both a PCP and ID specialist, the PCPs were usually great. It was the ID docs who should have had an attitude transplant.
Brent
(Who isn't so lucky these days)
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I can't say I've had arrogant asses for doctors. One was so delightful he wore Tweety Bird socks every day. He was a bit flirtatious too.
My last one in NYC was a rather quiet sort, and had actually once been Keith Haring's doctor and had some of his art work in the office. For some reason I did a google of his name recently and someone had made some comment that he'd picked up the bottle again and wasn't recommended any more. Of course, I'd take that with a grain of salt... internet being the source of all the world's lies.
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Mine is very laid back - almost too much so for my taste. But it's a good balance to my nervousness. And the slow and steady approach has worked well so far. If your not happy and you have options, go for it.
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Adding my voice to the chorus of get a new doc.
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Thanks to everyone for the feedback, advice and sharing. I have informed the patient liaison officer at the trust that I will be leaving the trust and have given him my reasons for doing so. I have not made any accusations but have stated plainly that I wish to hava clinician who is more accurate, attentative and proactive in their approach.
Hope everyone is having a good week.
Kind regards
g