Is this clinic staffed with incompetents?

[UALaw77]

Okay, I'm really put out with medical professionals generally who often seem to be tyrants with little respect for their patients' intellect.  I got my second blood work back on Valentine's Day.  As a review, my first blood work came back in January.  I had a CD4 of 743 and a viral load of well over 300,000.  That same day in January, they drew blood for my second set of tests which came back on February 14th.

The clinic is led by a nurse practitioner.  The actual doctors come in once a week, I think, to meet with patients on an as-needed basis.  I was to meet with the doctor in January, but the infectious diseases specialist was out of town that day.  So I got someone who didn't know a lot about HIV, and she admitted as much.

Anyway, on V-Day, the nurse tells me that my tests from January reveal that, during four weeks from December to January, my CD4 fell 200 to 543.  I was alarmed.  I asked her what my viral load was.  She said that she wasn't going to tell me.  I said, "Excuse me?"  She said, "I can't explain it, but we got two different results back for you, and I have no way of knowing which is correct."  I said, "Well, what are they?"  She said, "I'm not going to tell you because it would only upset you."  And I said, "I am a grown man, and I don't need anyone making decisions for me as to what I can or cannot handle.  Furthermore, every piece of paper, every bit of information in that file belongs to ME, not to you.  Those are MY test results, not yours.  Tell me what they are."

So she tells me that one result showed a viral load of greater than 100,000.  The other result showed a viral load of less than 400.  Clearly, they both can't be correct.  It's even possible, I guess, that they're both wrong.  And what to make of my CD4?  Could it be wrong, also?

Regardless, it sounds like something you would want to keep your eye on, right?  Particularly if I'm losing 200 CD4 per month and we only have one reliable set of blood work so far.  So what does she do?  She orders more blood work for mid-April, the results of which would be back in mid-May--three months from now.  Hm...if I'm losing 200 CD4 per month and have a CD4 count of 543, then my CD4 count would be -57 (that's right, the impossible number of NEGATIVE 57) by the time those results come back.

Can anyone else interpret this data for me?  Should I find another doctor?

[Andy Velez]

UA, whatta rollercoaster you have going there!

Did the nurse practicioner offer any explanation or response which encouraged you to think this was just a one-off incident but otherwise the clinic is ok?

What's open to you as far as alternatives?

As I recall you were only recently diagnosed. If I'm correct about that then it's not unusual at first for numbers to jump around before settling down.

[Happy099]

Ok, you have every right to be upset, put off, and concerned with the poor quality of care you seem to be receiving at your clinic. I am a Program coordinator at an AIDS Service Organization in CA for Prevention with Positives. There is so much info you are not getting and no one is assisting you in what questions to ask. I do support you in your charge to manage your own care and that means ALL information is yours to receive.

Let's see if I can shed some light on the situation for you. First, I would be interested in knowing if your clinic considers you to be in primary infection? This could account for the large flux in your CD4 and Viral load numbers in the short period of time. People's numbers fluctuate most in primary infection (also when a person is most infectious). Second it is customary to do blood work every three months depending on a person's over all health. Your fluctuations may or may not continue. If u are in primary infection, you will find a leveling off of your CD4 and your VL going down.  Are there Social workers affiliated with this clinic?

Also, HIV/AIDS is a "specialty" practice. If there are NO HIV docs or NP's or whatever, they should NOT be treating you. If this is all that is available to you, then there is expert info available for your provider to access and state of the art information. There is something called the WORM line .. it is for providers and consumers to access information on care of people infected with HIV.

I am also happy to have you contact me to ask more specific questions. I am going to review your location and see what I can find so that you can access the info u need to manage your care. You are welcome to contact me at any time at work 415-615-9945 or my cell phone 415-424-9102.

Ed (Ed Byrom)

[Central79]

Hey UA

Sorry for all the trouble you've been going through. It does sound as though you're not getting great care. Happy's right, HIV is a "specialty" within medicine, because it's complicated and demands special knowledge and skills not taught to an average doctor (never mind nurse).

Regarding your change in CD4 - I'm not sure whether to be worried about this or not. Big drops in CD4 need to be taken in the context of CD4 %, which you weren't given. CD4 numbers can alter by as much as 40% in normal people, on different days. It depends on lots of things, including how rested you are. Yours dropped by less than 25%. If the CD4% is constant, you have nothing to worry about - this is just a mass effect of all of your white blood cells moving in/out of your bloodstream. If your CD4 % is dropping, that indicates HIV activity. I think it's unlikely you "lost" 200 CD4 cells in a month.

Regarding your VL it sounds as though there has been a lab error. Any lab worth its salt would have picked this up and not produced a result if they couldn't give you a reliable one. I don't really know what to say about that.

On the plus side, you seem to have a skill set I think is important for every patient - being politely assertive and taking responsibility for knowing the information and being inquisitive. I think with a long-term chronic illness like HIV that's really important to get the best care.

Hope you sort it all out, and let us know!

Matt.

[dtwpuck]

I agree that you have the right to be put off.
I can't help you with interpreting the data, except that it seems clear that someone made a mistake.  That sucks.

However, my current doctor is a complete and pompous ass.  I went to him upon the recommendation of the local ASO here in Detroit.  I had just moved from Seattle and I was used to a doctor who was just simply really cool.   (so if anyone knows a good doc in the Detroit area, I'm all ears)

After having a similar exchange with him about him telling me which high blood pressure medication to take... I told him no, that I wanted the same thing I had been on before.  He told me he was the doctor, etc, and that he knew better.  I looked at him straight in the face and said, "Doctor, I've gone to school for as long as you.  I have two advanced degrees and work in a field which requires me to make decisions based on thorough amounts of research.  Your assumptions that I am not intelligent enough to make informed decisions and do research myself is quite misplaced.  While I realize that you think you are doing what's best for me, I am telling you that I will be the final decision maker on these, and you, Sir, are a respected adviser.  You will either give me all the information I request, and answer my questions directly, or I will find another doctor."

He was really shocked and actually thanked me for putting him in his place.

Now, if I could get him to talk to people who don't have too much education with some level of humanity.