Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
December 20, 2014, 08:15:41 PM

Login with username, password and session length


Members
Stats
  • Total Posts: 650038
  • Total Topics: 49618
  • Online Today: 168
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: getting sicker by the day  (Read 4336 times)

0 Members and 1 Guest are viewing this topic.

Offline scaredsilly

  • Member
  • Posts: 15
getting sicker by the day
« on: January 05, 2010, 10:55:09 PM »
My ex-husband was diagnosed with hiv in april 2009. He began meds and was looking and feeling better than he had in a long time. In the past 2 months he began to get weak, had no appetite and complained of chills. On Friday he had to be rushed to the hospital  and was given a blood transfusion his blood count dropped to a 3 (the dr. stopped the transfusion because he said it wasnt helping him) and today the dr said that his kidneys were not functioning and performed surgery to prepare him to begin dialysis. In addition to all of this he is hallucinating and began slurring his words and stuttering. The dr said that his number is under 200 and thats not a good sign. My question is is there realistically any way that he will be able to recover. His family is upset with me because I am preparing our 20 year old for the worse because I believe that this hospital stay is prolonging the inevitable. Ive been tested 3 times since april and I am negative but there are many many women that I feel deserves the right to know his status. Because of his dementia would a family member be able to provide names to the health dept so that letters could be sent to the women who are unknowingly at risk?

Offline leatherman

  • Member
  • Posts: 6,327
  • Google and HIV meds are Your Friends
Re: getting sicker by the day
« Reply #1 on: January 05, 2010, 11:51:02 PM »
I took the test at the 8 week mark and it was negative.
I was diagnosed in April 09. I am on meds but am having trouble keeping food down.
Ive been tested 3 times since april and I am negative
you know we can read your old posts, right? And that your story changes a lot?

Because of his dementia would a family member be able to provide names to the health dept so that letters could be sent to the women who are unknowingly at risk?
it's best to worry about yourself and your 20 yr old during this time of crisis. Whatever else you would like to do should be talked about and handled later after this crisis has passed.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline scaredsilly

  • Member
  • Posts: 15
Re: getting sicker by the day
« Reply #2 on: January 05, 2010, 11:59:59 PM »
the december quote youre referring to was written by my ex husband when I visited him. thats when he started to get really sick and needing to be hospitalized. I told him to make his own user name but he found it easier to use mine. Believe me there is no games being played. Im just worried about him, my daughter and as crazy as it may sound the women that are in the dark. You say focus on my daughter and that goes without saying but that really didnt answer any questions that I had.

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: getting sicker by the day
« Reply #3 on: January 06, 2010, 05:48:07 PM »
The majority of people who are diagnosed when they already have AIDS eventually recover these days, but the first year is a particularly dangerous time. 

Note that just because he is hallucinating does not mean he has dementia.  It's not quite clear from your posting what infection(s) he has (AIDS doesn't typically kill directly -- instead it weakens your immune system so you are very susceptbile to diseases.)  Many of the stronger drugs ued against infections can cause hallucinations -- personally I'm still not sure which of my hospital "memories" are true and which are from the drugs used to fight PCP.

As far as notification, why the rush to do this while he is in the hospital?  If you are truly concerned about him and his health now is the time to focus on that -- a few weeks delay in notificiation is not going to matter. 
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline scaredsilly

  • Member
  • Posts: 15
Re: getting sicker by the day
« Reply #4 on: January 06, 2010, 11:21:55 PM »
Thank you so much for your reply. Today he was still weak, shortness of breath, refuses to eat, cant walk on his own, and is still hallucinating. He had his first dialysis treatment yesterday. The new thing thats been happening is he has hick ups that will not go away. Thank God that his family has been very supportive but they refuse to get educated on this disease. I do my best and help as much as I can but like I said he's my ex-husband and I'm remarried. The family expect alot more than I can deliver.

Offline Carly

  • Member
  • Posts: 56
Re: getting sicker by the day
« Reply #5 on: January 07, 2010, 10:59:39 AM »
Sorry to hear that your ex-husband's not doing so well.  The good thing is that with the medications today people do recover, but I'm not a doctor & I'm pretty new to all this too so I can't really speak on his illnesses one way or the other.  It is unfortunate that his family refuses to educate themselves on this disease.  The more we know about the disease the easier it is for us to deal with it & accept it.  I think it's very commendable that you're at least taking the time to stay by his side.

We just found out my boyfriend of 6 years was positive in November, & he was diagnosed with AIDS in December.  Fortunately we've only had to deal with things like skin rashes & thrush thus far.  I have my fingers crossed that that's all we'll have to deal with right now.  I too have tested negative, but the when I tested it had only been about 2 weeks or so since we'd had sex, so I'll have to test again next month to find out for sure.

As for your concern about all those other women, well, imo it should be your ex-husband's decision as to whether or not he wants to inform others of his status, not yours.  I'm a firm believer that people should always take responsibility for their own actions.  As Ann has said, "to agree to have unprotected intercourse is to consent to the possibility of being infected with an STI".  If any of these women had unprotected sex with someone of unknown status, it is their responsibility to get tested.  If, later on, when your ex-husband is feeling better & lucid again he may decide that's what he wants to do, but it really isn't your decision to make.  And besides, the last thing he needs right now is for the entire world to know about his condition.

Sorry, I'm not trying to sound harsh, but I really do think that it is the person with the virus who should decide whether or not they want to disclose with others.  

Anyway, hopefully your ex-husband will start to improve soon.  Please keep us posted.
« Last Edit: January 07, 2010, 11:05:51 AM by Carly »

Offline Sebastian1969

  • Member
  • Posts: 71
Re: getting sicker by the day
« Reply #6 on: January 07, 2010, 11:34:15 AM »
Sorry to hear of your x's condition.  Keep us posted on his progress, we will be sending our good thoughts his way.
As far as the status thing goes-I am agreeing with Carly on this one, we as partners and loved ones of someone with HIV need to let them handle how and when they tell someone.  I understand that these women may not know, but it takes two to tango and the responsibility lies on them to get tested if they were having unsafe sex with anyone.
Let the family know that you will do what you can, but you are right, he is an x and you have a husband and daughter that come first.  I understand that you have feelings for your x-although not the same feelings that you had when you were together, but feelings none the less, do what you can and what you are comfortable doing for him and his family, his family can't expect anything more than that and will appriciate the fact that you still care enough to help.
Good luck to you and him.

Offline scaredsilly

  • Member
  • Posts: 15
Re: getting sicker by the day
« Reply #7 on: January 07, 2010, 11:39:12 PM »
Thank you Carley and Sebastian for your concern. He's doesnt seem to be getting better. Today they took him for a ct scan to see why he keeps a fever of 103. He throws up anything he eats and his feet have swollen up terribly. Im arguing with the family because they are pressuring our 20 yr old daughter to be more involved. They want her to come to the hospital everyday to feed him and encourage him. My daughter is upset and crys all the time. My argument is we have been divorced for 17 years. He has never tried to be an active participant in her life because he was always chasing women which is the reason for the divorce. Now that he's down and out they want our daughter to step up. I told them that she will do what she feels comfortable doing and nothing more. If she wasn't important to him when he was well why must he be a burden to her sick. The extended family I once knew are like strangers to me now. It all so overwhelming. My daughter is still feeling like shes may lose me also. I keep gettiing tested just to assure her that I am fine and I'll be here but shes still afraid.

Offline Sebastian1969

  • Member
  • Posts: 71
Re: getting sicker by the day
« Reply #8 on: January 08, 2010, 04:59:32 PM »
That sucks--can't think of any other way to put it.
What does your daughter want to do?  She is 20 and although young and I am sure it is hard as a parant to believe, she is a young adult.  I would try to support whatever your daughter wants to do, rather that be spend day and night by his side or visit him a couple times a week.  At the end of the day, you do not want to hurt the relationship between you and your daughter.   It might be good for your daughter to talk to someone, a grief counselor or something, I am sure the hospital has them and it can help her through this time. 
Take what suggestions people (his family) give for what they are--suggestions, you probably know your daughter and the situation better than anyone else and the decisions on how to handle it should be yours and your daughters.

Offline scaredsilly

  • Member
  • Posts: 15
Re: getting sicker by the day
« Reply #9 on: January 09, 2010, 12:32:04 AM »
Wow. I didnt know how good it would feel to vent and receive an unbiased opinion. Thanks Sebastian again. You are truly a friend in my head. I guess its difficult because other than his family there is no one to talk to. My friends and family dont know the circumstances. They dont even know he's sick. As far as my daughter goes she knows I support her with whatever she chooses to do. She visited him once in the hospital but she doesnt want to go back. He was moved to a room with 3 other patients and they tested them all for TB. My mother-in-law said the dr told her if anyone test positive then she will need to be tested also since she spends most of the day there. I want to be supportive but this is more than
I signed up for. Im afraid to go back to the hospital now. I'm not afraid of the hiv/aids status but TB is a whole different thing. Am I overreacting?

Offline Tempeboy

  • Member
  • Posts: 359
  • Like St Francis of Assisi I am wedded to Poverty
Re: getting sicker by the day
« Reply #10 on: January 09, 2010, 01:32:54 AM »
Hey scaredsilly,

What a difficult time it must be for you and your child, here are a couple of 'pearls' - I hope that they might be helpful.

Your daughter sounds like she is struggling - totally understandable.  Does the hospital have a social worker or counsellor that she could talk to?  It might be helpful for you both??

Your consistant negative blood tests are fantanstic - great news.

Your ex might have a 'delerium' rather than a 'dementia'.  Dementia can be long term where as delerium is usually short term and is often brought on by another medical condition - very common with kidney problems.  Recovery can be dramatic or slow - and the changes in mental functioning are temporary.  If he is in a safe place - and it sounds like he is - it's the best thing for him.

There should be no pressure on your daughter to see her father while he is so unwell - again an experienced counsellor will be able to help her explore her concerns in a way that benefits her.  If she is feeling guilty she might like to write her father a letter that you can pass on to your mother in law.

Take care.



TT
Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

Dean Kiley

Offline scaredsilly

  • Member
  • Posts: 15
Re: getting sicker by the day
« Reply #11 on: January 21, 2010, 10:15:48 PM »
I wanted to give an update on my x's status. Unfortunately he not doing any better. He's still in the hospital and receives dialysis 3 days a week, he's on oxygen and his legs and feet have swollen up so bad that he can't walk. They did a bone marrow procedure two days ago. I don't know what that was for. Also his fever gets so high that he sweats like someone poured water on him. The nurse put him on a machine that keeps him cold to bring the fever down. Its heartbreaking to see but I always try to make my visits pleasant. Poz family please keep me and my daughter in your thoughts and prayers.

Offline leatherman

  • Member
  • Posts: 6,327
  • Google and HIV meds are Your Friends
Re: getting sicker by the day
« Reply #12 on: January 21, 2010, 11:07:22 PM »
I am sorry that we got off onto the wrong foot; but I hope you can see how the separate voices speaking through your screen name were confusing.

I am also very sorry to hear what a difficult time your X is having. Almost two years ago, I put my partner into the hospital for 60 days. Transfusions, antibiotics, fevers, a weekend in critical care, room changes, swollen legs, MRIs, HIV meds, kidney functions, liver functions, white blood cell counts, chemo treatments, delirium and "hospital psychosis". Staying by a person's side can be an overwhelming and traumatic experience for the loved ones who can do little or nothing more than hope to pass along some emotional support, and possibly a spark of normalcy or happiness into a truly miserable experience.

I went through some of the questioning as you when I tried to decide how friends and family (like your daughter) should respond to help or not help in a similar situation. Although I had hoped that I could force those people to be there in the middle of crisis to support my partner, I found that those same people have their own emotional issues seeing someone in such a precarious position. It says a lot about you that you can give your X some support that we both knows he desperately needs if he's to come through such an experience. However, I can also understand your daughter's reticence to see her father so frail and so ill. Young people aren't usually equipped to give support  to their parents after so many years of receiving support from their now-ill parent.

Do you know what diagnosis the doctors have given your X? and what the prognosis is? We might be able to give you better support if we understood what issues he is dealing with.

My best wishes go out to your X for a good recovery! Best wishes also to you and your daughter to get through such a trying experience and to have the strength to be what help and support you can to your X.  :-*
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline scaredsilly

  • Member
  • Posts: 15
Re: getting sicker by the day
« Reply #13 on: January 22, 2010, 09:20:04 PM »
Thanks leatherman all is forgiven. Today they stopped dialysis and removed the IV's because his veins collasped. He has TB in the bones (never heard of that before). Since he's not in an isolated room I assume he's not contagious. The drs wont tell me anything and either his mother is not telling everything or doesnt understand what they are telling her. It really does not look promising.

Offline leatherman

  • Member
  • Posts: 6,327
  • Google and HIV meds are Your Friends
Re: getting sicker by the day
« Reply #14 on: January 22, 2010, 10:06:51 PM »
The drs wont tell me anything and either his mother is not telling everything or doesnt understand what they are telling her. It really does not look promising.
Now I am really sorry to hear that. And from what you've relayed, it hasn't been sounding good for some time.

When my second partner was in the hospital barely 2 yrs ago, I had to flash about the medical power of attorney papers quite frequently to be informed of what was happening, so I can understand that they aren't telling you very much as an "ex-wife". I'm sorry to hear that too, as I can read your concern about your ex-hubby in your posts and know it must really trouble you to not know the full details.

I kinda agree with you about what his mom doesn't know/doesn't understand. I find in these kinds of rough times many people opt out for denial and bury their heads in the sand about what's really happening. In my situations (losing two partners) sometimes I wished I could have been like the friends and family. They held onto hope much longer and deluded themselves until the last. Unfortunately, I was always the practical one, so I had to just deal with the reality of what was happening. I would imagine as a mom and wife running a household you can understand that.

The doctors often aren't much help in that respect either as they can be hell-bent on trying anything and everything to, quite literally, the bitter end. I had to actually fight (not in fisticuffs but in several screaming/yelling matches over the unconscious body of my last partner) to get the doctors to admit to the uselessness of their treatments and to allow me to take my partner home to die in peace.

I had not heard about TB in the bones before, but thank the great god google, I have now. I wasn't able to find enough info that talked about treatment and/or prognosis rates about that kind of TB; but you're right unfortunately, it doesn't look promising. it sounds as if TB in the bones is due to the TB spreading out into the body from the lungs. I will be thinking of your ex, you and your daughter, and still hoping for a recovery. Though I was practical about what was happening with my partner, a part of me never gave up hope for a miracle as those things do happen from time to time. I just didn't hope so hard that I wasted energy on it that I needed to give out in support. I'll keep my finger crossed while I'm thinking positive thoughts and hoping for the best.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.