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Author Topic: Feeling lost and confused  (Read 2106 times)

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Offline Cottoncandi

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Feeling lost and confused
« on: January 21, 2014, 01:08:00 PM »
Does anyone have any experience with multi drug resistant superbug? This is how the doctors have described my mil status. She's been taken off of everything and released to hospice. She came very close to death and bounced back. Now she's running around like a teenager. While I'm happy for the quality she seems to be given, I'm very concerned about what she's exposing herself to. In June her counts were UD and cd4 of 30. She was still on haart with those numbers . She also had 3 blood transfusions. She's been around a lot of sick people and done just fine. I just don't know what to expect. Any thoughts?

Offline mecch

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Re: Feeling lost and confused
« Reply #1 on: January 21, 2014, 01:59:31 PM »
Your "mil"?  American English here so I'm sorry if I don't understand who you are talking about?

Also, your friend has "multi-drug resistant" HIV?  Or a bacterial infection? 

In the US, people are sent to "hospice" on the primary criteria that doctors consider the illness terminal.  Occasionally people "bounce back", but terminal means terminal - a matter of time.

There was scaremongering based on ignorance, about multi-drug resistant untreatable HIV in the mid 2000's.  This proved to be a false scare, those strains were treatable.

I am wondering if you haven't provided enough information about what is going on here.  If someone has undetectable viral load on HIV treatment, in JUNE, I'm not sure that same person can subsequently have "multi-drug resistant" untreatable HIV. 

May I ask - is it possible your friend is HIV+ but has other serious and terminal conditions, infections? 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Cottoncandi

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Re: Feeling lost and confused
« Reply #2 on: January 21, 2014, 02:36:56 PM »
Mil means mother in law so sorry. She contracted HIV sometime in the late 80s. She's somewhat secretive about her status until her husband left her around 07 and we found out of her status . Since then we've had to make sure she had her meds and kept her appointments because she just wanted it all to go away understandabley. She had cryptococcosis and almost died in 99. This is when she was diagnosed with aids status and began haart, I believe. (We were kept from this) the past few years after becoming resistant to pretty much everything in April she had some brain swelling after treatment for a brain tumor. She was put on steroids and sent home. Downward spiral her bone marrow began to fail her. Three transfusions later they told us this was it. Nothing more they could do. The numbers I have were the last ones drawn. She was taken off all meds and released to hospice. They don't draw labs so I have no idea where she's at with vl or cd4 . But since she's come off everything she's doing really well hence "bounced back" still no treatment. She has no infections that we are aware of. They did find a tumor on her kidney while in hospital in June. They told us it was probably cancer but she would survive to even seek treatment. Once doctors release you they don't se to want to talk to you! Hospice here hasn't had too many aids patients. They are as lost as we are . I'm happy for the quality she's been given but I'm scared of what's to come

Offline wolfter

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Re: Feeling lost and confused
« Reply #3 on: January 21, 2014, 02:47:32 PM »
I'm not sure where you're located, but I've never heard of stopping HIV meds because of other terminal conditions.  I too developed a brain mass (tumor) because of cryptococcal meningitis and was treated aggressively. 

I wonder if she isn't hiding some pertinent information from you all.  Did she or the doctors decide to stop treatment?  Perhaps it's time for a heart to heart with her and discover the truth.

best wishes
wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Cottoncandi

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Re: Feeling lost and confused
« Reply #4 on: January 21, 2014, 02:56:56 PM »
At one point the docs wouldn't even see her unless we were with her. I was usually the one. This is what they've told me. She thinks she's off her meds because she's doing good. When we try to talk with her it turns aweful. I even told the docs that I had a really hard time believing there were no more meds. They showed me the genotype tests. She resistant to entire classes of drugs. I've talked with other id doctors, even others hemotologists nothing, I'm guessing this really doesn't happen that often?

Offline mecch

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Re: Feeling lost and confused
« Reply #5 on: January 21, 2014, 05:28:49 PM »
There are a few issues that aren't clear.   For the reader here and obviously for you as well.
The bottom line about your mother-in-law is that someone with no immune system and no treatment is going to die. 

Not clear why she has been judged "untreatable" for HIV.

Its not clear who is making decisions about this person's health care and death.

Did she at some point do a Power of Attorney for her own wishes?  If not, who now has control of what is happening?  Does she make the decisions? You?  Another member of the family who is not keeping you in the loop?

I don't think a doctor gets all the authority to send someone to Hospice and cut off all "curative" treatment.  At the very least, the rationale would have been explained to someone and if your mother-in-law was incapable of making her own decisions than who got the information?

Is she mentally not there? Because nobody lies to terminal patients about what is happening:  so why this:  "She thinks she's off her meds because she's doing good." People will remind her of the truth.  The whole point of palliative/comfort care is to help the patient and everyone else come to terms with the end of life and be removed from pain and suffering as much as possible. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Cottoncandi

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Re: Feeling lost and confused
« Reply #6 on: January 21, 2014, 05:46:32 PM »
I am her poa but they hospice has deemed her able to make her own choices.because of this there is nothing I can do. She just thinks everything will be fine. She was on a ton of meds but the doc told me the meds were shutting her bone marrow down. She was dying. These meds she was on we're the last they told me. because of that they said the best thing was to allow the virus to run its course. I have to assume her numbers are terrible by now. She doesn't seem to be suffering at all. Can her own body recover like that? Yes I'd agree the entire situation is bizarre at best

Offline mecch

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Re: Feeling lost and confused
« Reply #7 on: January 21, 2014, 06:24:30 PM »
Gee Im sorry about all this, first of all.
Also Im hardly the person to know whats happening here medically...
I don't understand how someone can be undetectable in JUNE and then be suddenly infected with multi-drug resistant HIV that can no longer be treated.

Something to remember is that as of JUNE, one could say the virus had already "run its course" if she was at CD4 30 and after so many years of having HIV and AIDS but why was she also UD....  ? 

Anyhow, the tidbit info about the bone marrow might suggesting that she has some sort of cancer and that is what will kill her.   

I don't know about "the rebound" at all.  If she rebounds from a cancer, then she is going to still have a huge HIV viral load which will lead to something killing her and it could be very messy. 

I don't know if someone in terminal "AIDS" for lack of a more precise term, and specific to whatever is going on here to her - I don't know if she could maintain low viremia at the end of life, with no treatment. 

I doubt a doctor is going to suggest palliative care for a cancer patient who is not terminally ill with that cancer. What finally leads to the shut down, well, I've been at the end of life with terminal patients and usually a doctor will describe what is shutting down in the persons body and give estimates about how long each little phase of all this is.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: Feeling lost and confused
« Reply #8 on: January 21, 2014, 06:44:51 PM »
What country is this?

The Hospices I know also take care of the family. You are lost and confused so I think you should ask the Hospice who you can talk to about your needs... For information, for example.  Hospices should have a social worker who serves as communicative link between all the concerned people, for example.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Cottoncandi

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Re: Feeling lost and confused
« Reply #9 on: January 21, 2014, 07:49:08 PM »
We are in the US. The doctor was very stumped as well. For years she's been UD and cd4 pretty consistent in the 70's . I was told she was fine and has always done well with low numbers. Then out of nowhere cd4 actually dropped to 18.  Still UD. This is when they found the pancytopenia. She had three blood transfusions before we were told it was the meds. She had bone marrow biopsies that turned up nothing. Cd4 came up to 30 after transfusions. As far as multi drug resistance, she's been running out of meds for a while. But they always told me not to worry.  Im really not sure how long someone in this condition can live without meds. Hospice has been good. We feel they are doing the best they can. Honestly they really haven't had to do much. She really is feeling well

Offline Jeff G

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Re: Feeling lost and confused
« Reply #10 on: January 21, 2014, 08:00:20 PM »
Welcome to the forums . You situation raises serious questions . I have known people with few med options and one person who never responded to any treatments but they never suggested that they stop all HIV meds . In most cases there are still some antiviral fighting benefit even with resistance issues .

Could it be possible that she has made the decision to stop meds and her doctors are only respecting her wishes ?

Offline Cottoncandi

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Re: Feeling lost and confused
« Reply #11 on: January 21, 2014, 08:19:07 PM »
I guess that's possible.

Offline Jeff G

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Re: Feeling lost and confused
« Reply #12 on: January 21, 2014, 08:21:23 PM »
If I were told that by my doctors I would go immediately and get another opinion .

Offline Cottoncandi

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Re: Feeling lost and confused
« Reply #13 on: January 21, 2014, 08:27:36 PM »
We did have another consult with another ID doctor. He agreed with the other doctor and said he wouldn't "treat her to death"

Offline Jeff G

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Re: Feeling lost and confused
« Reply #14 on: January 21, 2014, 08:33:36 PM »
I'm very sorry that this is where you find yourselves . Please keep us updated on the situation and remember to take time and look after yourself too .

Offline mecch

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Re: Feeling lost and confused
« Reply #15 on: January 21, 2014, 08:49:54 PM »
Increasingly, HIV is itself a cause for pancytopenia.
http://en.wikipedia.org/wiki/Pancytopenia
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Cottoncandi

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Re: Feeling lost and confused
« Reply #16 on: January 21, 2014, 08:56:57 PM »
I'm guessing transfusions helped? Once she came off the meds the pancytopenia stopped. We had a CBC drawn in July and it showed only slight anemia. Of course they wouldn't do cd4 or vl. Thanks so much for all the input. It means a lot. I've learned a lot reading everything. Wish I would have found y'all years ago!

Offline Cottoncandi

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Re: Feeling lost and confused
« Reply #17 on: January 21, 2014, 08:58:04 PM »
How long does it take for viral load to go up?

Offline Cottoncandi

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Re: Feeling lost and confused
« Reply #18 on: March 06, 2014, 10:12:51 AM »
Quick update... Looks like we made it through flu season without any issues.  She seems to be doing decent.  She's more tired than usual, but still keeps going. Having night sweats and some profuse sweating during the day on occasion. No fever or anything else. Not sure what to make of that. Anyways she seems happy and enjoying her life as much as she can.  Love your website! Thx for the support you give

Offline Cottoncandi

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Help with labs
« Reply #19 on: April 16, 2014, 09:10:33 AM »
A while back I posted about my mother in law who was taken off her meds and put on hospice care a year ago. She is seemingly doing well with little complaints.  Hospice even talked of dismissing her because of how well she's doing. Everyone is so happy but I'm skeptical.  I know what to means that she's off her meds for 10 months now.  They recently did blood work.  She has a cd4 of 60 which I know is low but she's functioning well (I guess) it was 18.  She received several transfusions back in June along with neupogen shots.  I believe this could be a reason why she did so well for so long.  Hospice didn't run a viral load which I did everything short of beg.  So there will be missing pieces. I never paid much attention to cd4% but hers is 8.1? Down from 16 a year ago? What is this number and is it more signifigant than cd4? Also what are WBC absolute? And lymph absolute ? Are these number signifigant to HIV/aids?

Offline Jeff G

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Re: Feeling lost and confused
« Reply #20 on: April 16, 2014, 09:21:16 AM »
I merged you new thread into your old one so that you and others can see the whole conversation in one place and to keep all the comments in proper context .

Please refresh my memory . Did you ever find out why she is not getting HIV meds or any attempt to find a salvage med combo for her . Its an unusual situation .   

Offline Cottoncandi

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Re: Feeling lost and confused
« Reply #21 on: April 16, 2014, 09:33:59 AM »
It was her choice based on what her doctor told her. Rock and a hard place for sure!

Offline Jeff G

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Re: Feeling lost and confused
« Reply #22 on: April 16, 2014, 09:44:43 AM »
It is a hard place for sure . Its very sad no matter what and I hope she has some good days ahead of her before she has to go back to hospice .

Offline Cottoncandi

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Re: Feeling lost and confused
« Reply #23 on: April 16, 2014, 09:51:59 AM »
So as far as blood work what are cd4 %? This isn't ok is what I'm guessing from your response? :(

Offline Cottoncandi

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Re: Feeling lost and confused
« Reply #24 on: April 16, 2014, 09:53:21 AM »
Btw this forum seems to be the only place I can get answers,

Offline Jeff G

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Re: Feeling lost and confused
« Reply #25 on: April 16, 2014, 09:56:45 AM »
A cd4 count of 60 is grim news in the absence of treatment . Its just a matter of time until she is back in the hospital . I'm very sorry this is what the reality is and wish I had better news to give you . 

Offline Cottoncandi

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Re: Feeling lost and confused
« Reply #26 on: April 16, 2014, 10:04:09 AM »
No thank you for your honesty.  The docs and everyone else act like this is no big deal.  They are going on what they think they see.  On the outside she seems better.  It's like I'm in the middle of all these people screaming and no one will listen! There really isn't anything I can do at this point.  This website has been a wealth of info so really thank you!

Offline Jeff G

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Re: Feeling lost and confused
« Reply #27 on: April 16, 2014, 10:08:53 AM »
If it hasn't been suggested yet I would advise you to get her in to see another doctor for a second opinion . If you cant get her to that then simply keep her comfortable until she returns to hospice .

Offline AusShep

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Re: Feeling lost and confused
« Reply #28 on: April 16, 2014, 10:17:25 AM »
So as far as blood work what are cd4 %? This isn't ok is what I'm guessing from your response? :(

CD4% below 14 is considered AIDS, along with her CD4 total, and opportunistic infections.  People here have come back from these levels and lower with treatment.   Without treatment things will get worse eventually, but hard to say how soon.

Agree with Jeff's comment to see if another dr will provide treatment, or explain why he can't better than her current Drs have.

 


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