enough is enough (STOPPING TREATMENT)
Sep 9, 2006
Hi Doctor Bob,
I've been reading your forum ever since I was diagnosed, but never needed to write in because, yes, the answers really are in the archives! (Remember this people).
But now I've decided I've had enough. My meds have failed, and I've had every side effect possible. I hardly even recognize myself in a mirror thank to lipoatrophy and am really thin from wasting and throwing up. Hepatitis is just ridiculous, PN's a pain and anemia's getting really boring. And I'm STILL not undetectable.
So I'm sendiing the rest of my meds to a charity that sends them to the third world, and am going to try to live whatever time I have left in a better way. I want to live again before I die. I hope to recover my zip and maybe this general health improvement will really be better for me. I want a good quality of life, even if it is shorter.
I only have one question. I do get along quite well with my doctor, but do you think he's likely to agree to continue monitoring my general health? Do I still need to take up an HIV specialist's time? I haven't asked him yet and would appreciate your reaction if one of your patients took this decision. Not that I'll change my mind, but I'd like to be prepared.
I'm not just giving up. I have fought this for 10 years, and given it everything I had. I intend to continue to do so, but want to feel better.
Thank you for this wonderful service. You are not just one of the good guys, but one of the best guys!
Your friend Jess
Response from Dr. Frascino
We are always in control of our own destiny and free to make our own choices regarding if and what therapies we are willing to take.
"Quality of life" has to be an essential part of any treatment equation, although unfortunately it often seems to have second-class status when treating significant illnesses like AIDS or cancer. What would be my reaction if one of my patients wanted to discontinue therapy for the reasons you elaborated in your post? I would continue to offer my assistance in whatever way I could. If I felt the patient had made a wrong decision based on inaccurate information, I would do my best to enlighten him or her. If I felt he made the wrong decision because he was depressed or was not thinking clearly, I would work on those issues. Ultimately, as I said before, the decision belongs to the patient. And even if I would have chosen a different path, the physician's duty is to help, to inform and to serve.
That said, looking specifically at your situation, you state, "I'm not giving up. I have fought this for 10 years, and given it everything I had. I intend to continue to do so, but want to feel better." That statement sends up immediate red flags to me indicating that the "quality of life" component in your treatment regimens has not received the attention it deserves.
Should you continue to "take up an HIV specialist's time?" Absolutely. You need a competent and compassionate HIV specialist now more than ever, one that will work with you and help you with the priorities you have set. "I want to live again before I die. I hope to recover my zip." You report "my meds have failed and I've had every side effect possible. I hardly even recognize myself in the mirror . . . lipoatrophy . . . wasting . . . throwing up . . . hepatitis is just ridiculous . . . PN's a pain . . . anemia's getting really boring, etc." Chances are your HIV specialist may be almost as frustrated as you by not being able to drive your viral load down and allow immune reconstitution. You'll need to refocus his efforts, advising him what is most important to you and what options (and potential consequences of those options) you have to choose from. Many of the things you list can be treated very effectively anemia, nausea, vomiting, pain and even fatigue. Ideally the best therapies target the underlying cause of the symptom. But if your HIV and/or hepatitis are not responding to your meds, then symptomatic therapies are available that can greatly improve each of those annoying conditions. Ultimately, if those come under control, you may even consider trying to knock your viral load down with a more user friendly drug regimen or even a drug still in clinical trials that appears to have fewer side effects. If your current HIV specialist isn't willing to work with you, I would suggest you seek a second opinion. Often a second opinion can offer additional insights or treatment options another specialist may not have considered.
Jess, your body may be taking a beating at the moment, but I can certainly tell your spirit is still strong and vibrant. I firmly believe the human spirit is stronger than anything that can happen to it, including HIV! I also believe we often measure life in the wrong dimension length! It should instead be measured in depth.
Feel better, Jess. I'm here if you need me.
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