|CMV, Thrush and CD4 of 60
Jul 25, 2010
Hi I know this is kind of long but there is a lot going on and we are really worried. I wrote in 9 months ago about my sister when she had toxoplasmosis. Six months prior to that she was hospitalized with pneumonia. Prior to the pneumonia she had stopped taking her HIV meds after it she took them for a while but stopped again. She then developed toxoplasmosis. Again she started on the HIV therapy but stopped because she was vomitting so much that she developed ulcers in her esophagus. She was unable to swallow food so the doctors put in a feeding tube this was 3 weeks ago. She has since been having headaches so bad that she had to go to the ER to get shots for pain. Last week when she went to the ER they did a CT and found lesions on her brain and admitted her to the hospital for possible toxoplasmosis. Everyday since she was admitted she has deteriorated. The first day in she was eating food and carrying on conversations. By day 2 she was vomitting everything she ate or that was put in her feeding tube and they did an MRI. She had more lesions than the previous toxo but the lesions this time appeared to have blood in them. By day 4 she had developed a UTI and was sleeping most of the time unless she needed up to use the restroom and toxo medicine was started. Day 5 she started losing control of her bladder and could walk. We had to basically pick her up to put her on the comode. Day 6 she was almost comatose not really responding to anyone and unable to speak and sleeping most of the time and incontinent. On this day the doctors did a second MRI. The lesions had grown and there were more of them. The doctors are now calling it CMV and started medicine for that and steriods. Today (day 7) she is more alert but when she talks she sounds like a stroke victim very hard to understand (like her tongue isn't working) and it sounds like she is yelling and really straining to get the words out. She is in such pain and complains of her head hurting and every other part of her body hurting. She is also crying a lot. This is absolutely horrible to watch. What I would like to know is do you think what we are seeing today is progression of the disease or maybe a sign that the medicine is starting to work? Her CD4 is around 60. Her vitals are good and the thrush she had in her mouth is starting to clear up. Her doctors have been telling us all week that it doesn't look good and that we should start thinking about how far we want to go with treatment but all of this talking/screaming and crying started after the doctors came in so they haven't seen this yet. Also, could the esopageal ulcers have been the CMV starting? For the last week she seemed to deteriorate about every 12 hours or so. I just want to know if everything going on today is an encouraging sign or should we be prepared for the end? We just aren't that familiar with the progression of CMV and didn't know if what happened today is normal or a healing sign. I am also really concerned about her eyesight because she seems to be having a hard time seeing especially things in her peripheral vision but we will have the doctors check that tomorrow. Please help us. We talked to hospice yesterday and were getting prepared for what we thought was the end but these new developments are really confusing. Thank you so much
Response from Dr. Frascino
I'm sorry to hear that your sister is having such a difficult time. Her condition is no doubt critical. Brain lesions of whatever cause (CMV, toxo, etc.) often cause severe neurological damage. Your sister's profound immunodeficiency (CD4 count of 60) is very worrisome. There is always hope, however, I would suggest you continue your discussions with hospice and your sister's HIV specialists. At this point "comfort care" to control her pain and anxiety should be key. Whether she will respond to CMV and/or toxo treatment is difficult to predict over the Internet. The bottom line is that her prognosis is very poor at this point. I wish I could offer you better news. Please give her a hug from me, OK?
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