POZ Community Forums
Main Forums => Someone I Care About Has HIV => Topic started by: cnd2013 on August 07, 2013, 04:11:35 pm
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Hi all, this is my first post so bear with me. Recently my bf of one year was hospitalized after he suddenly began losing function of his motor skills. Doctors identified cerebral swelling or scars that were several years old. His CD4 count is at 200, he can speak few words and has a hard time processing thoughts, he cant walk without assistance and cant write. They attributed all of this to HIV and also called it a "wild virus" which I have never heard of. His parents didnt know and are telling me he didnt know either.
His family has been very supportive of him and our relationship, however, they're not letting me know details of his condition. Were not married and I understand their need for privacy but hes my partner who I love dearly.
My questions are: based on the information I have, is there a way to know how truly serious (its already is very serious) this is? Although familiar with HIV I am unsure of where he is or what to expect.
We always used protection and I have tested negative since I found out his status. He always told me he was negative but I never saw test results. I just trusted his word. Does the swelling/scarring mean hes had it for that long?
Any help or advice is appreciated. Our world has flipped upside down and Im looking for comfort. I've spent the past few days piecing together our year and have only gotten myself into an emotional mess.
Thanks.
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I am sorry for what you are going through CND. My bf has suffered from severe AIDS-related issues for years now and at his worst, he had a CD4 of 10 with an astronomical VL. He also had a huge lesion on his brain and was suffering from severe paranoia, hallucinations, and personality shifts. We honestly thought he was lost to us forever. The docs switched his medications up, and his CD4 climbed, VL went down, and his brain fog cleared up and he was home with us after two months in the hospital.
There is no way for you to know how serious the HIV is. If he was unaware of his status and was not on medication, then as soon as he starts taking medication, he could bounce right back. Keep a strong support system with you. I pray everything goes well.
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cnd - Its hard to be shut out of the loop by drs. and family. Hopefully, when your bf gets better he can authorize someone on staff to talk to you about his condition. Somehow, not knowing is worse than knowing what is wrong. I hope you get some information soon.
I'm not qualified to discuss the medical issues but I'm glad you found the forums. I'm sure you'll be able to get some good information here.
Habersham
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Thank you both. Its been difficult and its only been a week.
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This is a scarey time for all of you. I hope the brain swelling goes down soon.
'Wild-type virus' refers to HIV that doesn't have any resistance to the anti-retroviral drugs. If this is what they are referring to then treatment options are wide open.
I hope things go well for you, your partner and his family.
My thoughts are with you.
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Hi Cnd
I'm so sorry to hear about your boyfriend, it's hard not knowing what is going on, and I think it's unfair his parents are not keeping you informed as much as they should be.
Do you know if he has had any other tests done apart from HIV?...just curious about his symptoms.
Thinking about you, please keep us informed.
Jan
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Hi All,
It's been about three weeks since this all began. In that time my boyfriend is now at home and is recovering. His viral load went from 200 to 390 (he is on Atripla). He is still unable to walk or eat on his own, as you can imagine if he's not walking or eating on his own there is a lot more he cant do that just simply doesn't need mentioning. Doctors will attack the brain swelling once his viral load passes the 500 mark. Im hopeful he will make it there soon. My boyfriend has become more and more negative, what little he can say is rarely positive. Lots of "I'm sorrys." Doctors suggested getting mental help but I dont understand how this would be helpful if he can barely communicate.
At this point his family and I have become more comfortable with everything but are still very much heavily weighted by the situation. Were having uncomfortable moments and learning to ignore them, like yesterday Chelsea Handler was making some pretty harsh HIV jokes and we were all staring wanting to change the channel but not wanting to make the situation more uncomfortable. I guess in time we will surpass that.
My boyfriend and I are still together and I have made the decision to stay by his side until he is capable of answering a few questions I have. I feel it is right to help him through his recovery as I would hope he would do the same for me.
Lately I've been wanting to get a better handle on what it will mean for us to have a healthy relationship, I think its called a "magnet" relationship (not sure). I wanted to ask for any recommendations on possible reading material.
This has been difficult, most difficult for him, my heart breaks every time I visit. I stay strong but have my breakdowns when I'm alone, or sometimes unexpectedly in my car when its just me and my thoughts.
Thank you all for your responses. It really helps.
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Ok, the hard bit first, at some point he has fucked up, for all his tests if regular cannot have been negative, and if irregular then something else...you will have to decide on this in due course.
Now the not hard part, everyone, you included, deserves a break, so give him and yourself one. The road ahead is slow but optimistic. Time is a great healer, the HIV treatment is very good. Neurological damage can be recovered from, if not completely, to a degree. Give it time.
Having been in a similar experience, I have one word of advice, if you choose to take it, bear as much as you can bear and no more, look after yourself, there are two people here, at least, and both deserve care.
Good luck
- matt
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Newt/Matt, thanks for your response. At this point I have come to the conclusion that he knew and was afraid to tell me, or he didn't know but sensed that something wasn't right (hence him telling me his results came back negative). However, my reality is I am still very much in love with him and need and want to be there for him as long as he needs me.
Thank you for your advice. I am learning to cope with the situation as best I can. His family and I have decided that I will only visit on weekends and they will call me with good or bad news during the week when necessary. That way I can focus on my life and work as well.
I agree that time is a great healer, my hope is that he heal as quickly as possible.
This is not easy and wont be easier any time soon.
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Correction
I mentioned:
"His viral load went from 200 to 390 (he is on Atripla). He is still unable to walk or eat on his own, as you can imagine if he's not walking or eating on his own there is a lot more he cant do that just simply doesn't need mentioning. Doctors will attack the brain swelling once his viral load passes the 500 mark."
I meant his CD4 count went from 200-390 and needs to pass the 500 mark before he can take medication for his brain swelling.
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What exactly is causing his brain swelling issue? There are a few OI's that can manifest with swollen brains. Typically, they try to treat that first.
Wishing you both well.
Wolfie
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cnd,
I can sympathize with you regarding everything you are witnessing. My father was hospitalized in Feb. 2012, there is a thread of mine that was called "Sometimes it's harder on the people watching", I'll comment on it, so if you would like to read it, it will be at the top of the forum list. I think you will see some similarities in how you are feeling now, that I was feeling then. Unfortunately my father passed at the end of March, because he chose to live in denial of having it vs. being treated for it. All the best to you and your boyfriend. :-X
Heidi
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Heidi, I'm really sorry for your loss. It's heartbreaking to see someone you love suffer. Its frustrating to know with all certainty what they are capable of doing because you have seen them do it and stand there helplessly as their body doesn't cooperate. I read your thread. Thank you for sharing. You are a wonderful daughter.
When this all began I went through the "Why us?" phase but quickly realized that I had to stay away from that frame of thinking because it was happening wether I liked it or not. I realize that although he is going through the toughest challenge his life has put before him, his family and I are also carrying that weight with him. Sometimes it is harder on the people watching. I hate the waiting, not knowing what's next, and feeling so helpless.
I have to believe in my heart my boyfriend will recover. At this point I wont allow anything to cross my mind and stay but that.
Thank you for your post. It really helped.
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Wolfie,
Im not exactly sure. As I stated before his family is handling all of it and I am not privy to every detail. From what I do know they plan on treating the swelling with steroids.
When I first visited him in the hospital he was more coherent and present. There are days now when he doesn't really say anything at all.
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Good evening everyone, is with great sadness that I inform you that my love passed away last month. I understand there is a In Memoriam Forum, however, I don't have much else to say. After his diagnosis from HIV to AIDS he quickly developed a series of opportunistic infections that ended with a PML diagnosis. Once he was given several weeks to live we, as a family decided to take him off all meds except pain meds and focus on making him comfortable. He left this world surrounded by the closest people in his life at home.
I want to thank you all for your support and words of experience and wisdom. I am dealing with the situation as best I can. I am full of great memories that can be both beautiful and haunting at the same time. I am willing to answer any questions for anyone that has them regarding his condition. I'm not sure if I mentioned this before but I am under 30 years old and he was under 25. I'm not sure if that matters to anyone.
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My condolences to you CND . May he rest in peace .
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I am so sorry that this whirlwind has been so terrible, so strong, and so brief. Please continue posting here if you want or need to. We are here for you. Just because your loved one has passed on does not mean you are no longer someone who cares about/loves someone positive. Love can last a lifetime, and beyond.
You have been brave, and strong, and I hope you are taking care of yourself. You have given selflessly and with your whole heart. This forum needs more stories like yours, and I hope you can find the fortitude to stay here - or at least come back if you can. There are many people suffering who could benefit greatly from your wisdom.
It is my sincerest hope that you walk in peace, knowing that you brought great love into a world full of grave loss.
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I wanted to share my condolences. I had hoped he would have made a full recovery, or a decent one.
The longtime friend, who I believe I acquired my infection, died from what was described as a very similar brain issue. I heard brain cancer to brain swelling. We had lost touch, so I was just hearing second-hand info. He was in denial and never sought treatment. If I'm correct, then he would have been infected for at least 10 years, before he died.
You said it was okay to ask questions. Did you ever get more info on what was going on? I have no idea how something like this is treated in someone with HIV, so do you have info to share why the brain swelling couldn't be treated until his viral load passed the 500 mark? I didn't understand that and wasn't sure whether you meant until his CD4 was 500. But, I wouldn't have understood why they couldn't treat until then either. However, I have no idea the treatment issues regarding this, so perhaps that's just the way it is. Did his family open up to you more and also included you in the funeral arrangements? That seemed odd they were supportive, but also were shutting you out.
But, above all the questions, I am so sorry for your loss. I just can't imagine. I wish you all the best as you move forward.
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cnd2013, I am so very sorry to read about your loss. Our longtime friend just lost his battle to AIDS Dementia and PML. He was diagnosed in April with HIV-Aids and passed away October 2nd. It was rapid and unforgiving. I know how hard it is for you.
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I'm so sorry for your loss. I also believe you could give some beneficial insights to others because of your experiences. I hope you check in from time to time.
Take care of yourself.
Wolfie
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My condolences to you and the rest of his family.