I wrote in around a week ago and received a response telling me what we expected. There are some new developments. The doctors originally thought my sister inlaw had cmv and toxo. They are now calling it just toxo. She is on medicine for the toxo and thrush and is also now on meds for pneumonia. They think the pneumonia is caused from aspiration as she can no longer swallow. They drew an abg on Wednesday and it was 49%. They put her on 100% O2. The pulse ox now reads 97% from her finger. She has 3 teams of doctors working on her and 2 of the teams have called the family into meetings saying she is dying they think her lungs are going to cause her death. The 3rd team (the HIV doctors) are still trying and keep giving the family hope. The HIV doctors are focusing on the toxo. We don't really see any progress and are really confused with all the conflicting opinions. She has been pretty much comatose all week since last Sunday. This past Saturday night (3 days ago) she kind of woke up and said she was scared and couldn't breath she still talks like a stroke victim. We really thought we were going to lose her that night the nurse also thought we were. We got her through it and resting again and the following day (Sunday) she started getting very vocal and has stayed that way. Sunday she was crying and asking why me and saying she was scared. She sounded like she knew what was going on and told people she loved them and could answer some questions partially. She still sounds like she is having a hard time saying her words (like a stroke) and says everything very loud. She asked her mother to help her and then asked her to please let her go. When her mom told her it was ok to go she went to sleep and slept peaceful for several hours. Earlier this same day they did another mri. There was no improvement. For this mri they really doped her up so she would lay still and she still moved a lot and was crying and yelling even after an extra dose of fentenal and haldol. She awoke Sunday night and again was very vocal. We were up all night with her. On
Monday her HIV doctor decided he was going to dc all pain meds to do a neurological exam. Also on Monday she was again very vocal but now seems to sound like a small child. Calling out mommy and repeating everything we say over and over. She has talked almost nonstop for 2 days only taking small naps. Some of what she says makes since and some doesn't. They restarted the pain pump this afternoon at the mothers request. She couldn't handle the nonstop talking and crying out that she hurt. They have done 3 mri's now. We were shown the first 2. The one that was done when she went in the hospital 2 weeks ago showed 2 small lesions and 1 larger (50 cent piece size) this was on Tuesday. The following Sunday (9 days ago) they did a 2nd mri. This one showed most of the brain covered with lesions. Looked like a very small percentage wasn't covered. They had started the toxo med the day before this one and cmv med on this day. This past Sunday (1 week later) the did the 3rd mri and there were minimal changes. We just don't understand all of this and can't get the doctors to explain it. Is there really value in keeping her off of pain meds to evaluate her or is the damage already done and this is as good as she gets? If she won't improve we don't see any point in putting her through the stress of taking the pain meds away. Can the damage from the lesions reverse when it's this severe or is it permanent? She is almost in a manic state right now. It's truly devastating for all involved. This is all so frustrating please give us your opinion. If she is going to pass anyway we would rather she were comfortable when it happens than in a panic and confused state. I'm not sure if you have access to my last question so I am pasting it at the end of this so you can get the full picture. They have done a spinal tap (results clear) and 3 mris. They have not done a biopsy because they think its too invasive. Please give us your opinion we are so frustrated and tired of the emotional rollercoaster these doctors are putting us on. Thanks
Jul 25, 2010
Hi I wrote in several months ago regarding my sister-in-law and her toxoplasmosis. She is now back in the hospital with more lesions. The doctors believe she has toxo and cmv and she went in with a bad case of thrush. When she entered the hospital a week ago she was eating, awake and being pretty normal except for having a really bad headache. Everyday she has detiorated and now sleeps most of the day in spite of being given ridlin to try and keep her alert. Her eyes look flat like a blind persons but she says she can see. The doctors have told us they don't know if she will get any better but they are still trying several medications. Her CD4 is 60. She is unable to eat or drink can't get out of bed and has to wear a brief. From Tuesday to Sunday her lesions got bigger and she developed several new ones according to mris. My question is this they started CMV medicine on Sunday (3 days ago). When should we expect to see improvement or do you think we will? There are 3 children involved and we need her coherent so that she can sign papers on where they are to go in case she doesn't pull out of this. We don't want their father to get them because first he has nothing to do with them but we think he may try for the SS money. Secondly, he is the reason she has this horrible disease. Several years ago he was going around having sex with women without telling them he was positive. He went to prison but got out a few years back. Please give us your opinion. I wrote in a couple of days ago with more detail but never received a response. Please help.
Response from Dr. Holodniy
If this is a CMV brain infection, you should start to see some improvement by now. I assume they are doing all the appropriate work-up (scans, spinal tap, or perhaps brain biopsy) in order to get her the appropriate treatment. What would help most would be HIV medications that can increase her CD4 count so that her immune system can better fight and control these infections.
I have not changed my assessment of your sister's prognosis. I would not recommend holding her pain medications or any other comfort measures. If the three teams of physicians are giving you mixed messages, I would suggest you have the physician in charge (the ICU attending or perhaps your sister's HIV specialist) arrange for a group meeting of all three teams so that a unified plan can be agreed upon.
Once again I'm very sorry for your sister's struggle with AIDS. I hope her tragic story will enlighten others not only to realize the horrors associated with HIV infection, but also to the absolute necessity of working closely with an HIV specialist and adhering to medicament regimens early in the course of the disease.
Your sister remains in my thoughts.
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?