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Feeling Helpless in the Medical Community
Jul 31, 2008

I submitted this letter in another forum but it was never addressed, so Im trying this one. Since my first submission Id had the time to think about everything that has transpired over the past 5 to 6 years of my HIV treatment. Ive come to understand my feelings of helplessness as Ive first, been moved out of one practice to find another, due to lapse of medical coverage (nearly 5 years of treatment at that facility), and now again 5 years later due to my loss of confidence at a much larger facility. Its difficult living with HIV. Its not something thats easily talked about with family members, if at all. There isnt always a large community of qualified doctors available in some areas to choose from. So I can now understand where my feelings of helplessness stem from. It began with a blood center telling me you have to go here Later, that doctors office telling me you cant be seen here anymoreyoull have to seek treatment there now And now, Ive had to make my own decision that I cant allow myself to be seen there anymore But I think that the feelings of uncertainty for what the future held, actually kept me in a facility that I probably should have left some time ago. Againbeing HIV positive, how many choices are available, if driving 60 miles to a doctors office isnt feasible? I have a feeling that Im not the only person that something like this has happened too. I would deeply appreciate you sharing this story, and offering any input or insight into the experiences that Ive written about below. Thank you!

I'm really having a problem with a situation that I'm having great difficulty letting go of. I currently take three different medications to treat my mental health issues as well as talking with a therapist weekly. All in all, things are going pretty well. I was diagnosed in 1998 when my orthopedic surgeon pulled me aside 5 minutes before going into hip replacement surgery, to tell me that my blood tested positive for HIV antibodies. Needless to say...I was floored. Like I stated above...things have been going pretty well for the most part, despite facial wasting and several years of sculptra and radiesse treatments. About a year and a half ago, after dropping 10-15 lbs in only a few months time, I was diagnosed with Type II Diabetes. My HIV doc and PCP, had mentioned nearly every visit that my blood sugar was on the high side, and asked if diabetes ran in my family? But he never ordered any additional testing. So I figured..."nothing to be concerned about". When reviewing my blood glucose levels (fasted) for the previous several years, they were always around 150-200+ even though I trained 4-5 days a week and my diet was in line with my physical training regimen (I'm a certified personal trainer). I had slipped into a bout of depression and had stopped exercising and starting eating like crap. This was when the weight loss happened and I received the diabetes diagnoses. So I confronted my doctor with the obvious question..."Why didn't you have further testing done when I could have caught this and possibly avoided Type II Diabetes"? His only answer was..."I didn't believe that you were fasting when we drew your blood". This was over a 2 year+ time frame of my involvement in a nationwide clinical study, where it was absolutely necessary that I was fasting for each visit. But he didn't believe that I was fasting? Maybe he could have asked me a second time, after I told him yes the first? So now I'm dealing with diabetes that could have possibly been avoided. Needless to say...I switched to another doctor in the clinic since I had lost any confidence in his judgment. The new doctor was fantastic. She was everything I could have hoped for in a PCP and an HIV physician. I used to tell everybody that "I have the greatest doctor in the world". I really believed that I did. The time came for me to start back on medication and my choices were pretty limited due to a fairly high level of resistance. I wasn't happy, because of the high potential for lipodystrophy from beginning on PI's. We discussed my treatmentI was shown a card with all of the existing meds and was told "You'll take 4 in the morning and 3 at night". It was a good thing that I remembered that. Two days later and three new bottles of meds on my kitchen counter; I sorted out all of my meds for the day. The labels said; (2) Prezista 300mg twice daily. (1) Epzicom 300mg once daily. (1) Norvir 100mg once daily. That figured out to be 4 in the morning and 4 at night. That wasn't what I remembered. So I called the pharmacy at 6:10AM furious that they had screwed up one of my scripts, and demanded that they tell me which one it was and correct it. As it turned out...they hadn't made a mistake. My doctor did. The greatest doctor in the world, who knew the level of resistance that my virus had...had made a mistake on one of my prescriptions. I asked the pharmacy to make a copy of the script, because I was having a hard time believing it, even though the nurse at the clinic had already told me that it was the doctors mistake. This was the doctor that I had switched too, after my first at the clinic had failed to alert me to the possibility of developing Type II Diabetes, if I did not maintain my diet and exercise regimen. Or at least could have run a second set of blood test if he didn't believe I was fasting for the first. It was five years ago when I was forced to leave a smaller practice because my insurance benefits were cut off. When I transferred to this much larger facility it was emotionally difficult at best. About the time of my third visit, I was told that the clinic had lost my records. It wasnt that the transfer of the records from the previous office didnt take place. The new clinic had the records (5 years worth), but they lost my entire personal folderand it was never found. So I'm leaving the clinic entirely now. I'm switching to a doctor that I've been told is "brilliant" by my therapist. But I can't seem to let go of the disappointment that I feel about the doctor that I thought was the greatest in the world, making such a mistake. I was having difficulty with looking beyond the first doctors "oversight (?)"...and this just completely floored me. If I hadn't caught the mistake...it might not have been noticed until months later when refills were called in. And what would be my resistance levels then? Like I said...I'm having a lot of difficulty moving past all of this. Doctors aren't supposed to make mistakes like this. Not twice in a row (three if you count the lost personal records)...back to back...with the same patient. Disappointment doesn't even begin to cover the range of feelings that I'm having. I really did like the second doctor that I switched too. I wish that this had never happened. And since this is all centered on my HIV status...I can't even talk about it to the people that I'm around the most...the people I work with. Nine hours a day we joke and kid and help each other to get through difficult times. But I can't talk about mine.

Response from Dr. McGowan

I am sorry to hear about some of the problems you have had. I am also glad that you are generally well and able to work as a professional trainer.

You are correct that many of your issues are being faced by others with HIV. It is a mixture of the way medical care is financed, the availability of specialized HIV care givers and the complexities of HIV, especially when people may lack the social support thay need or have anxiety/stress and depression to deal with. There is no easy answer to your probelm other than to maintain communication with your provider, be alert and participate fully in your care and insist on a comprehensive care plan that deals with emotional and mental health issues as well as medication issues.

Best of luck,

Joe



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