Impatient for treatment?
Aug 20, 2002
Dear Dr. Wohl Again, I appreciate all your hard work in participating in this forum. You posted responses to questions I had regarding participating in a clinical study, questions regarding starting A late start in prophylaxis for PCP and then the onset of PCP 4 days later. The postings were on 7/31/02 and 8/04/02 respectively. I still have not started any type of retroviral therapy and have been told the study may be delayed several weeks.
My latest absolute CD4 count is at 7 and my viral load is at 52000. I feel like I am in a very dangerous situation right now but the sense of urgency, in my opinion, is not shared by my physician. My physician has been out of the office this week therefore I saw one of her colleagues to follow up with the PCP (greatly improved) and he is also the study coordinator there. I was to see about starting in the study yesterday 7/13. That is when he told me about the most recent delay study.
He reviewed my medical history including all of the blood work profiles during our visit and due to issues of Anemia and some elevated liver enzymes, scheduled me to have an ultrasound of the liver and gallbladder as well as seeing a Hematologist that same day. There they took a bone marrow sample and did an exam. I have a follow up with the hematologist in two weeks. I could not get an appointment for the ultrasound for a week.
The anemia was diagnosed on 7/29/02. My primary HIV doctor asked me if I wanted to see a Hematologist and my response was do I need to? That seemed like it should have been her call. She told me lets see if things improve once you start therapy. During my most recent visit with her colleague, he seemed adamant about getting me in to a hematologist. We spoke a lot about the study and both agreed it wasnt a good idea to wait several weeks for the study to begin and subsequently discussed moving forward with retrovirals. He wanted to see the ultrasound before deciding on treatment regimen however, my primary doctor will be back in the office before I even have the ultrasound test performed? There havent been major changes in blood work results since first batch done 7/29/02 and the most recent completed 8/6/02. I am now looking at another week before the ultrasound is performed and will then need to schedule an appointment with my HIV doctor. What next? Also there seems to be a disagreement between doctors on whether to start a new patient on a P/I immediately. Primary says yes, colleague say no. What are your thoughts?
My first visit with my HIV ID specialist was on 7/8/02 and I am still not on any therapy with a CD4 count of 7 and viral load at 52000. I have meet with her now numerous times for follow up and now I am beginning to wonder if I am being impatient or unreasonable in my urgency to start treatment. I am very happy with my doctor as a person but I am concerned with what seems to be a lot of disorganization and absent-mindedness, which may be jeopardizing my health. I want to have the finest care available to me and fortunately, have very good PPO insurance. I am fairly confident my treatment will finally start next week. But I am concerned about long term care as well. Are these serious enough concerns to warrant seeking another physician or is this just not that big a deal? Thanks in advance for any advice you may provide and apologize for how verbose this communication became.
Response from Dr. Wohl
I am sure the delay in starting HIV therapy must be frustrating. Clearly, you need to be on therapy and soon. It seems like everyone agrees that the study is no longer an option due to the delay in its opening. The only remaining issue appears to be the anemia and your liver tests. In most cases, anemia itself does not deter me from starting antiretrovirals but influences my choice of drugs as some (AZT in particular) are more likely to produce anemia than others and I would not want to aggravate this problem. (Make sure the PCP therapy is not what is causing or worsening the anemia as alternatives with less bone marrow toxicity are available).
Abnormal liver tests could be a problem but depending on what exactly the pattern of abnormality is and how severe should not justify withholding therapy for long. The question would be what would your clinicians find during their work up that would prevent them from starting HIV medications? If nothing, then why not start sooner. Clearly, if they found gall bladder disease, for instance, that required surgery they might want to delay until that was over - but I suspect that is not what we are talking about here given your question.
I agree with you, the clock is ticking and you are mentally ready to start HIV therapy. Unfortunately, getting an appointment with another clinician may take longer than the work up of your liver and anemia. I would insist you see the doctor immediately after your ultrasound and that a decision to start therapy be made at THAT visit. You need to be a squeaky wheel - I can tell you it definitely works. Patients who speak up, who demand and ask questions, I am convinced, do much better than those who quietly comply with whatever the white-coated provider says. Do NOT be afraid of pissing anyone off.
If you are not satisfied with the response you get from your doctor - you need a new one. It's your life we are talking about here!
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