|Severe anemia and MAC
Jun 27, 2002
Dear Dr, My daughter is 25 years old and is at end stage AIDS. She is now living with her father about 50 miles away. I see her every week. It is so sad to see her wasting away. She is a beautiful girl at 140 pounds. She is now at 119. She has had 3 units of blood on May 7th and another 3 units May 24. The three units yesterday brought her to 9.6. She was at 6. We moved her up here from Miami as she was very unhappy and wanted to be near us. She is going to a Infectious Disease Dr in the small town where she is now, but not much confidence there. How can we find her the best Dr in the area? She has been hospitalized longer than 2 months so far this year. We want to do every thing humanly possible for her. This Mac that she has has quite a hold on her. Please we need something to hold onto. Hoping a good Dr will help. Thank you for listening Concerned mom
Response from Dr. Frascino
Hello Concerned Mom,
Your daughter's problems are complex - advanced-stage AIDS, wasting, MAC, and now, severe anemia. She needs to be under the care of a knowledgeable and compassionate AIDS specialist. I do not know where you are living, but I suggest you contact local AIDS service organizations for a list of specialists in her area. Another resource to try would be the American Academy of HIV Medicine. They have a website - www.aahivm.org. They can provide you with a list of specialists in her area.
Certainly your daughter needs a multi-pronged approach:
1. Supportive care for optimal nutrition and to combat AIDS wasting 2. Potent antiretroviral therapy to control her HIV infection 3. Appropriate antibiotic therapy to control her MAC infection 4. Treatment of severe anemia. Blood transfusions are helpful in quickly raising the hemoglobin, but their effects are temporary. Her anemia is probably multifactorial, with MAC, HIV, and perhaps anti-HIV drugs all playing a role. Treatment of her HIV and MAC may help. Procrit should also be tried. It stimulates the body to make additional new red blood cells and has been shown in many clinical studies to reduce the need for blood transfusions.
I'm sure this is a very difficult time for both you and your daughter. Once you've made sure she is getting the optimal care, she needs and deserves then the "something to hold on to," should be your daughter herself. Spend time with her, hold her, and comfort her as only a mother can. It's powerful medicine for both the body and the soul! And give your daughter a hug from me.
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