|AIDS, Anemia and Heart Attack
Aug 7, 2001
I have been ill with AIDS since the beginning of this year. It has taken time, but I have slowly recovered since my diagnosis and hospitalization. CD4's are now 350 and VL is undetectable. Currently on Trizivir.
Everything was going great until I had a heart attack 10 days ago. I also found out while in the hospital that my hemaglobin is around 11, down from 15 just 10 weeks ago. The cardiologists told me to follow up the anemia issue with my primary doctor which I plan to do this coming week.
My question is this. Can my body handle more medication to treat my anemia? As mentioned above, I am on antiretrovirals, but add to that Mepron, Prevacid, Neurontin, Clonezapam, aspirin, Lipitor and Metoprolol. I have been out of the hospital for 5 days and am feeling pretty tired. I'm not sure if it's due to the new heart meds or possibly to anemia. Considering everything, I don't feel overly depressed so I don't think my tiredness is psychological.
Any thoughts or suggestions? Should I insist that my HIV specialist give me treatment for anemia as soon as possible or can it wait? Your comments would be sincerely appreciated. I'm beginning to feel like I'll never be able to lead any kind of normal life. Do you think I have a chance to get through my AIDS related problems and recover from a heart attack as well? The combination of the two don't sound particularly encouraging.
I'm not complaining but I now have more doctors than I know what to do with, and unfortunately, each specialty seems to basically ignore the other. Do doctors realize how difficult it is for patients with multiple problems to "make the balance" between them all? This includes balancing and making sense of sometimes conflicting advice given by doctors who seem to assume that their speciality takes precedence over all others. In the hospital where I'm treated, the notion that your various doctors consult and work out a strategy to best treat you is truly something from the movies, and this lack of communication makes me quite nervous sometimes. I read you often and admire your kindness and knowledge.
In the past (before my heart attack), I suggested to my doctors that they consult (at least by phone) to work out the best treatment plan for my case. My suggestion almost got me blacklisted and labeled as a troublemaker.
I will appreciate any comments and when I'm stabilized from my heart problem, anemia, etc., I'm going to nominate you for some world peace prize or something. Your forum is providing a tremendous service to sick people all over the world and I hope you and all of your colleagues realize just how important the information is that you give. Sometimes we (AIDS patients) feel like we have no where else to go. It's funny really, we see a countless number of doctors all of the time, and many of us come here (to the Internet) to be truly listened to and to receive sound advice. Thanks. May you live a long and healthy life.
Response from Dr. Frascino
Thanks for writing. It sounds like things are a bit overwhelming at the moment. To answer one of your questions first, do you have a chance to get through your AIDS-related problems and recover from your heart attack as well? Absolutely!!!
Let's start with the good news. Your CD4 count is 350 and your viral load is non-detectable on a relatively simple antiviral regimen - Trizivir. If you tolerate the mediation and your viral load remains undetectable, your CD4 count should continue to increase.
Secondly, your heart attack was 10 days ago. You are already recovering well from that episode. The Lipitor should decrease your cholesterol and the metoprolol will help your recent heart problem. Presently, you are not on any of the antivirals (primarily protease inhibitors) that have been associated with metabolic changes (increased cholesterol and triglycerides) that would further increase your cardiac risk.
I'm not sure why you are taking the neurontin and clonazepam. Perhaps for a seizure disorder or treatment of neuropathy? I'm assuming the Mepron is prophylaxis for PCP (pneumocystis pneumonia). The good news there is that if your CD4 count stays above 200 for 6 months, you can most likely discontinue your PCP prophylaxis. Of course, you should check with your HIV specialist before making any changes to make sure there are no extenuating circumstances.
So what about your fatigue? Most likely, this is due to your anemia. Your hemoglobin dropped from 15 to 11 in just 10 weeks. Anemia means there is a low number of red blood cells in your body. Red blood cells carry oxygen from the lungs to the rest of the body. Oxygen is necessary to burn food for energy. If there is too little oxygen, you feel tired. Your cardiologist wanted you to follow up on your anemia for a couple reasons: First, to determine what's causing it and second, to treat it so that you are not putting any additional stress on your heart. Anemia will cause your heart to work harder and beat faster.
Why do people with HIV or AIDS get anemia? There are several common causes. Some medicines used to treat HIV can cause this problem by suppressing the bone marrow where new red blood cells are made. AZT (retrovir, combivir, trizivir), a component of your trizivir, is well known for causing this problem. Other potential causes of anemia include: inadequate iron, vitamin B12, or folate (another type of B vitamin). These substances are needed to make new red blood cells. Red blood cells can also be lost if you have bleeding. Certain infections, such as parvovirus B19 or MAC, can induce anemia. Once you and your HIV specialist have determined the cause of your anemia - AZT is your most likely culprit - you should definitely and specifically treat that cause. If the problem is too little iron or vitamins, you can alter your diet or take specific vitamin or iron supplements. If the cause is the AZT component of your Trizivir (most likely in your situation), and you don't want to change your medications, then Procrit would be your best option. Changing your medications is a possibility, but Trizivir seems to be working well for you and it's quite convenient to take. Plus, it doesn't increase your cardiac risk by increasing cholesterol or Triglycerides. Consequently, treating your anemia with Procrit does seem like your best option. Procrit works like the natural protein in your body called erythropoietin or epo. Epo is nature's way of telling your body when to make more red blood cells. Because of your HIV infection, AZT treatment, and your overall health, you may well need "extra" epo in addition to what your body is producing naturally. Procrit supplies this "extra" boost to stimulate your bone marrow to manufacture more of your own red blood cells. This is definitely preferable to a blood transfusion, which uses other people's red blood cells. Blood transfusions should be used only for severe anemia that requires emergency and immediate treatment. Blood transfusions can suppress your immune system, which can lead to progression of your HIV infection. So, it is best to avoid them whenever possible.
Procrit has no side effects and no adverse drug interactions with any medications. It is self-administered as a small injection with a very small needle just under the skin. We recommend a once-per-week dosing schedule.
Finally, your last question was the most troubling and unfortunately all too common - conflicting advice form multiple doctors who aren't communicating with one another. Certainly, each of these doctors wants to help you, but you are correct when you say they often focus just on the their particular subspecialty and how it relates to your health. We have to continually remind our doctors that we are indeed people attached to our medical problems! They must treat the person and the medical problem as a unit. It seems obvious, but often it isn't to our very busy, highly stressed physicians. So how should you proceed? I'm not much of a sports guy, but to use a football analogy, you need a quarterback - someone who calls the plays and is in control. As a musician, I can suggest another analogy: You need as conductor for your orchestra of physicians. Sure, we need all the various musicians - violins, trumpets, clarinets, tympani, etc., but if the conductor doesn't tell them when to play, how loud, and at what tempo, then it would all just sound like a bunch of random noise instead of a Beethoven symphony. You've got to find a "conductor" for your health care who will work with you and your "orchestra" of doctors. Ideally, this person should be your HIV specialist. He or she is the one who should be running the show, referring you to various subspecialists when necessary, and evaluating the various recommendations from all the well-meaning folks involved in your care. Can you work closely with your HIV specialist? If not, you really should consider changing to a more compassionate (and competent) physician. You should also stay very proactive. Don't worry about being blacklisted or labeled as a troublemaker. There are always other subspecialists you can use, and avoiding a potential problem based on miscommunication can literally be lifesaving! You should always ask for a copy of your laboratory results and the subspecialists' reports. Keep these on file chronologically and bring them to your appointments with your HIV specialist, so you can review the lab results and recommendations. If something doesn't make sense, your HIV specialist will intercede with the subspecialist to straighten things out for your. Your request that doctors work together is not at all unreasonable. The reason some physicians appear to resist this idea is that it creates additional work for them. One busy physician trying to reach another busy physician on the phone to discuss a specific patient, especially if the full medical records are not readily available, is often time consuming and difficult. However, cooperation among your various physicians is essential. This is where your "conductor" physician comes in. If you have collected all your consultation reports and various lab reports, the HIV specialist is the person you should be able to rely on to evaluate and develop an optimal treatment plan. Maybe it's unreasonable to expect your cardiologist to call the other 5 doctors involved in your care, but it's not unreasonable for you to expect your HIV specialist to coordinate the advice you receive from all the various subspecialists involved. If push comes to shove, copy this question and reply. Show it to your physicians. It may help wake them up to the reality of what it's like to live with this virus.
No need to nominate me for a world peace prize, just get well, stay well, live well, and continue to help educate well-meaning physicians to recognize their critical role as a healer of the whole person, rather than the treater of a specific disease process.
Best of luck. Write back if you are still having problems or if your "orchestra" of doctors is still not playing in "tune."
I'm always so tired!
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