|We found out how low is low
Nov 18, 2003
Hi Dr. Bob, As a follow-up to how low is too low recently posted, Scott's wbc,rbc and hemoglobin went down by 50 in 2 weeks. He is in the hospital right now, where he has received 3 pints of blood so far. He's cool with me writing you on his behalf. All of the docs automatically blamed the drain on the AZT after ruling out internal bleeding and, after some debate, he switched to Zerit, the other "e" drug in Combivir which name escapes me right now (I'm a tad stressed) and will continue to take the Sustiva. We coaxed them into checking for the parvo just in case. No new vl or cd4 numbers since last correspondence. Two follow-up questions: 1)How long do we wait to know whether the AZT was the cause? 2)What symptoms should we be looking for after this transfusion to make sure it didn't do any harm? In the hospital especially it seems the docs aren't very "up" on this stuff, so we are trying hard to stay ahead of the knowledge curve in case they drop the ball. His HIV doc is not a hospital doc and we don't know when we'll speak to him next. These answers and anymore of your incredible insight would really be appreciated. Thanks,again, Dr. Bob. As soon as things calm down a little and we get our finances straight we'll be sending what we can to your foundation. He was just diagnosed in July, and without you and this site, we would be way in the dumps. This little crisis has gone very smoothly due to the info you just provided last week! Take care, Scott's wife
Response from Dr. Frascino
Hi Scott's wife,
Sorry to hear Scott's anemia progressed to the point he required hospitalization and blood transfusions! I'll repost Scott's original question and my reply, so our readers can catch up on what's happened so far. Then, I'll answer your questions.
How low is low? Posted: Oct 22, 2003
Hello Dr Bob,
I am wondering How low is is low for Red blood cell counts and Anemia. My CD4 count has been 75 and not climbed much in the last two months, my viral load is at 100 and not moved in my last two tests. I have been extremely fatigued for the last three weeks. My blood test show the following: RBC: 2.91 Hemoglobin:11.3 Hemotocrit: 32.5 WBC:2.5 My HIV Doc says these are normal ranges for an HIV patient. I think I need something to bring them up. This is the second month in a row that the levels have been low. What do you think? By the way my meds are: Combiver/ Kaletra (switching to sustiva due to too much stomach pain and bloating feeling. Thanks for your advice. Sincerely, Scott
Response from Dr. Bob:
Hello Scott, Anemia means you don't have an adequate number of red blood cells or hemoglobin an essential protein that carries oxygen from our lungs to every other part of our bodies. Oxygen is essential for energy, so if your body's tissues aren't getting enough, you're going to feel wiped out. Some folks may be anemic and have very few, if any, symptoms. Others can experience a whole array, including extreme tiredness, exercise intolerance, shortness of breath, rapid heartbeat, paleness, headaches, decreased sex drive, fatigue, weakness, inability to concentrate, dizziness, and the list goes on and on. How much you feel these various symptoms depends not only on how many red blood cells you've lost, but also how quickly you lost them!
So how do you tell if you're anemic or not? A simple blood test will give you the answer. It's called a complete blood count (CBC for short), and all HIVers should have this test run every 3 to 6 months. The CBC contains several tests pertaining to your red blood cells:
1. RBC: Red blood cell count. Generally this should be 3.6 to 6.1 million per cubic millimeter of blood.
2. Hemoglobin: A protein that enables RBC's to carry and distribute oxygen throughout the body. The normal ranges are 14-18 g/dL for men and 12-16 g/dL for women.
3. Hematocrit: The percentage of blood that is occupied by RBC's. Generally speaking, red blood cells should make up 40-52% of the total blood in men (35-46% in women).
So, as you can see Scott, you are indeed anemic. There are no special ranges of "normal for an HIV patient." Anemia is anemia, whether one is cohabitating with HIV or not. I think your physician should investigate the potential causes of your anemia and treat these underlying causes, if at all possible. The short list of potential causes includes:
1. HIV itself. The virus can cause chronic inflammation and suppress the production of new red blood cells in the bone marrow (where red blood cells are manufactured). This is called anemia of chronic disease.
2. Opportunistic Infections. Your CD4 cell count is low, which means you are at risk for opportunistic infections. (As an aside, I hope you are on some form of PCP prophylaxis. If not, you should be!) There are a wide variety of infections that can be associated with anemia MAC, TB, CMV, parvovirus B19, etc. You should be screened for these and other potential infections.
3. Nutritional deficiencies iron, vitamin B12, folic acid, etc. these can occur as a result of poor absorption or inadequate diet.
4. hormonal imbalances hypogonadism.
5. Blood loss.
6. Opportunistic malignancies, such as Non-Hodgkin's Lymphoma.
The treatment of anemia depends on the underlying cause or causes. If, for instance, you have iron-deficiency anemia, then iron supplementation would be helpful. If, on the other hand, you had HIV-related anemia of chronic disease or AZT-induced anemia, then Procrit would be an excellent option for you. Procrit is easily self-administered once per week by small injection, and stimulates the production of new red blood cells. It has minimal (if any) side effects, and no drug-drug interactions. It also works like a charm. Treatment of anemia in the setting of HIV disease (and cancer chemotherapy) has been shown to improve energy level and enhance quality of life. It is even associated with improved survival! If your HIV specialist is not willing to investigate and treat your anemia, consider getting a second opinion, because being anemic should be anything but "normal" for HIV patients!
Write back if you need additional information. Good luck. Dr. Bob
OK, now to your specific questions:
1.If AZT were the sole cause (and we certainly are not sure of that yet), Scott should improve rapidly off the drug. Blood tests should show indications that he is making new red blood cells (increased reticulocyte counts), and his hemoglobin, hematocrit, and red blood cell numbers should steadily improve from week to week.
2.There are no specific tests "to make sure (the transfusions) did not harm" Scott. However, Scott does need to be under the care of a knowledgeable and compassionate HIV specialist, monitored closely, and treated aggressively, so that he can avoid future transfusions unless they are absolutely necessary.
Transfusions can be life saving in patients with rapid-onset anemia (blood loss from trauma or surgery, for instance) or when symptoms are severe. Transfusions are also effective in temporarily alleviating severe anemia symptoms. However, for several reasons, the use of blood transfusions should be avoided whenever possible in HIV-positive folks. Blood transfusions can cause further immunosuppression. This has been measured with a variety of immunological tests, such as mixed lymphocyte cultures, cytokine production, natural killer cell activity, inhibition of monocytes function, and suppressor T-cells count. (I'm not recommending Scott have any of these tests. This is purely for informational purposes.)
Transfusions can also transmit some blood-borne infections, and sometimes cause iron overload. Special risks for HIV-positive folks include possible activation of HIV-infected lymphocytes and possible disease progression. CMV infection new or re-infection can occur. Some large studies have suggested that transfusions are associated with a reduction in survival time.
Don't let all that information scare you. I just wanted to share this information with our readers, as the question comes up fairly frequently.
Now back to Scott's specific case. I'm growing increasingly concerned about Scott's HIV specialty care. In my first response, I suggested you consider getting a second opinion when Scott was told his anemia was "normal for an HIV patient." Now, his specialist is not following his hospital course, and you "don't know when you'll speak to him next." Had he been a bit more proactive in evaluating Scott's anemia when it first presented, the hospitalization and blood transfusions may well have been avoided. I would again consider finding an HIV specialist in your area who is competent, compassionate, and proactive. Consider checking the American Academy of HIV Medicine's website (www.aahivm.org) for a list of specialists in your area.
I'm also a bit concerned the docs "automatically" blamed the anemia solely on AZT after only ruling out internal bleeding. Because Scott's CD4 count is quite low, other causes must also be considered, particularly opportunistic infections MAC, for example. Scott may also have anemia of chronic disease due to his HIV. If that's the case, then treatment with Procrit once-per-week should be started to decrease the risk of requiring future transfusions. Treatment of HIV-related anemia enhances energy levels and improves quality of life. It is also associated with improved survival.
OK Scott's wife, give Scott a hug from me. Keep me posted on what's happening. And do consider that second opinion, OK?
Good luck. I'm here when you need me.
why is your picture always in black and white?
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