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Author Topic: Lots Going On  (Read 5984 times)

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Offline sh0reboy23

  • Member
  • Posts: 9
Lots Going On
« on: April 23, 2012, 07:49:43 PM »
For starters,

I took my boyfriend of 4 years (age mid-20s) to the ER 4 weeks ago yesterday because he thought he had the stomach flu. After requesting for the doctor's to take his blood, because it was his 4th visit in a week, they finally did. The hospital staff noticed a few things, suggested it could have been lymphoma, tumor, the doctors didn't know. More tests were needed, but the nurse told me he refused to test for HIV.

On day 4, I finally got him to take that test. Results: poz. Not only that, an ID doctor came in and said it is AIDS (CD4 of 19) & the OI cryptococcal meningitis is in the CSF. I cried that day, being provided a life expectancy timeframe & that the type of fungal infection is extremely rare.

My fate just knew, if he is poz, than I am too. Sure enough I am, but it is not advanced and I can fight it off (CD4 of 319, VL 25000). I believe I can with the support of my family and a few close friends; hate that the virus is in me, but I am more worried about him right now.

Still in the ICU as of present, I just don't know what to do with survival without my partner. I have read via the internet that IRIS may develop from the starting of antiretroviral treatment (that the doctors started this week). I have just been a mess. I know there is hope for me, I start on the new drug Complera in two weeks.

I just need the support to know that we will be okay. I cannot stand visiting the hospital any longer and seeing the pain in his eyes, when he is not sedated. Wish we could both be woken up from this nightmare.

Has anyone experienced cryptococcal meningitis before knowing their status? Does anyone have any words of wisdom?

Very happy to have found this forum.

Offline HereIAm

  • Member
  • Posts: 68
Re: Lots Going On
« Reply #1 on: April 24, 2012, 04:58:51 PM »
Dear Sh0reboy,

First, I am sorry that you and your partner are positive.  I am also sorry that he is apparently quite ill, right now.

Second, welcome to the forum.  I have found great support and solice here.  There are many people who provided me brief glimpses of home, support, and virtual friendship.

Third, there is great hope!  Please look at my numbers in my signature line.  I started with a CD4 count of 23.  I had lost about 20% of my body weight, had thrush, and unbelievable diarrhea.   I did not have meningitis.

I began the medication and slowly got a lot better.  You will too.  Your partner will likely as well, though, I don't know his whole story and am not his physician or even a physician at all.  But, I do know that I have had some friends, people I have met here and people I have met in the community who were very sick when they were diagnosed.  Several I know had CD 4 counts lower than your partners.  I am happy to tell you that they have survived and by all accounts seem to be doing well.

This is a tough virus.  I too hate it, like you -- probably like all of us.  But, something I have personally learned is that it is VERY managable.   

I think these are scary times for you.  That is what I hear you saying.   I understand that, at least in some small degree.

I am thinking good thoughts, sending you positive energy and will remember you in prayer -- something I personally do.

Others will likely respond here too.  There are many smart folks here.  Many who have had similar experiences. 

You are welcome to private message me if you'd like. 

Kindest Regards,

HereIAm
Tested Positive 10 Sept 2008.
24 Sept 2008:  CD 4: 23;   1%;  VL: 770,709
1st Oct 2008:  Started Atripla
4 Dec 2008:  CD 4: 145; 8%, VL: 209
1 March 2009:  CD 4: 91; 8%, VL: 49 (undet)
1 June 2009:  CD 4: 164; 11%, VL: 61
8 July 2011:  CD 4: 286; 17%, VL Undet
28 Oct 2011: CD 4: 346; 21%, VL Undet
2 Mar 2012: CD 4: 316; 20%, VL 6800 (probably an error)
12 Apr 2012: CD 4: 333; 21%, VL Undet

Offline sh0reboy23

  • Member
  • Posts: 9
Re: Lots Going On
« Reply #2 on: April 26, 2012, 06:42:26 PM »
Thanks for your words of support. I will continue to think positively and breathe on my own for the time being. I really hope I get everything I need from the ID doctor when I visit and that my bf will have a full recovery. Only God will make this happen.

Offline justinslyriq

  • Member
  • Posts: 13
Re: Lots Going On
« Reply #3 on: May 02, 2012, 11:40:23 PM »
Thanks for your words of support. I will continue to think positively and breathe on my own for the time being. I really hope I get everything I need from the ID doctor when I visit and that my bf will have a full recovery. Only God will make this happen.

My heart is with you right now. I was diagnosed this time last year however did not go through what you're going through. But you WILL get thru this and the only advice I can say is everything happens for a reason. Think positive and have faith that everything will be OK. Pls keep us updated.

Offline sh0reboy23

  • Member
  • Posts: 9
Re: Lots Going On
« Reply #4 on: May 03, 2012, 07:11:26 PM »
I appreciate your response Justin. Well, today is day 40 since he has been in the hospital. And to our benefit, I had the CD4 count wrong. When it was tested, his CD4 count was a 43 and CD4% was 19%, I think VL somewhere in the 400,000s. Not sure how that works, but I know its better than the original 19 that I was told.

Anyways, I have just been studying for a very important upcoming exam and going to work to get my mind off things. The hospital trips are exhausting, as he is sedated the majority of the time and they still found the cryptococcal meningitis positive in him, I believe it is not showing signs of growth. It is such a long way to go. The side effects for this infection and the treatments are just overwhelming, causing fevers left and right. I hope he walks out (whenever that time will be) healthy and smiling as he has always appeared to me.

I cry from time-to-time, and just can't believe we are going through this being so young (23 here). I forget what it's like to live a normal life with no care in the world. I miss my partner so much, and it is so hard to live in our residence without him. The "virus" gives me no sexual desires at all, and I have partaken into some recreational drug use on certain days to relieve my pain.

It makes me smile to hear people praying, people who have been there, and people who continue to offer their support to me. I just really need it, and want to be in our happy place really soon.
« Last Edit: May 03, 2012, 07:13:02 PM by sh0reboy23 »

Offline forrest

  • Member
  • Posts: 162
Re: Lots Going On
« Reply #5 on: May 03, 2012, 08:31:37 PM »
Hey Shore,

:(  It is tough to read what you've written.  You certainly do have lots going on.  It has to be quite a blow to not only find out one - but both of you have hiv.  :(  You are right - days in a hospital can be very mentally draining. It's like you want to be there to support, but then you also need a little space in there too for your own health and well being.  40 days though  :(  Just really sorry that anyone has to go through such a thing. 

I'm new on this forum, but hang around and keep folks updated, etc. and I am sure you will find support! I have seen it on here.  I am sure you will be comforted to not only know there are folks who care, but there are also folks on here who have been through the same sorts of things and more.  I can't provide words of wisdom like they could, but hang in there.

Take care of yourself, too. Your own body needs some special care right now too so please take care of it as well.  Hang in there!  :)
2011-03-26:  Tested Positive

Date           |VL        |CD4 |4%  |CD8 |8%  |C4:C8
2011-04-06 |48,653 |603 |32.0 |646 |35.0 |0.61
2011-05-23 |64,324 |577 |36.0 |576 |36.0 |1.00
2011-08-02 |18,319 |574 |36.3 |587 |37.2 |0.98
2011-12-06 |10,375 |480 |30.1 |616 |38.7 |0.78
2012-02-22 |  9,674 |570 |33.6 |655 |38.7 |0.87
2012-05-04 |  8,439 |559 |30.4 |706 |38.4 |0.79

Offline Lad_Liam

  • Member
  • Posts: 56
  • it's a hitchhiker, not a hijacker
Re: Lots Going On
« Reply #6 on: May 03, 2012, 11:42:08 PM »
Hi Shore
Sorry to hear your news. As everyone says its a really big n hard thing to deal with this news, but is possible.

Also, people do recover and get better. You are both on that journey now.

Sounds like you are both getting good and quick medical care. That's excellent.

For you, the mental health aspect will also be important, so you can handle your own health, and support your partner in his recovery.

Have you got people you trust to talk with about this ?

Even now worried about yourself you think of him. Many people would only think of themselves, you seem to be a kind and generous person expressing care for others. 

Thanks for sharing, Your story shows me how good people can be even when dealing with bad things in life. Good luck, be strong.
a new dark passenger joins the ride

Offline justinslyriq

  • Member
  • Posts: 13
Re: Lots Going On
« Reply #7 on: May 21, 2012, 08:46:49 PM »
Shore,

Can you give us an update? I hope you and your partner are well.

Offline sh0reboy23

  • Member
  • Posts: 9
Re: Lots Going On
« Reply #8 on: May 23, 2012, 09:34:27 PM »
Hey guys. Day 60 is tomorrow, and he has been moved to a regular room away from the ICU and I know there are a lot of meds that they are giving him as they still perform lumbar punctures to test for the cryptococcus.

As of present, he finally is off of the ventilator, trech and no longer has the draining of the fluids from his brain pressure. He has woken up and is completely agitated, restless, and I am not sure he can hear. According to the nurse today, he just begun to speak, and to say the least, he is expressing SO much pain in a particular area. An open bedsore has developed there and he has a ton of diarrhea.. I pray the pain in the area will go away, because I cannot tell if he still has the excruciating migraines from the meningitis or stomach pains that he initially had when I took him to the ER two months ago. Good news is the nurse told me he said several (curse) words and expressed what area of his body is in pain. I have yet to really hear his voice since all of this, except the other day when I could have sworn he said my name!

He requires a lot of attention right now and I hope that the bedsore can be treated and/or disappear so we can get him progressing, but there always seems to be a bump in the road.

I go for a test of my counts and VL again in two weeks (which will be about a month of Complera). The ID doctor prescribed some depression medicine for me but I really think I have been doing alright coping on my own and have not decided to take it. Need all of the positive energy, doctor's wisdom, and the Lord's grace while we continue to battle through these dark stages of our life.

Offline sshortguy1

  • Member
  • Posts: 118
Re: Lots Going On
« Reply #9 on: May 23, 2012, 09:53:07 PM »
shoreboy 
 i'm very sorry for what you have to go through

Offline jimbalaya

  • Member
  • Posts: 88
Re: Lots Going On
« Reply #10 on: June 05, 2012, 07:26:51 PM »
Wow!  Reading your post was really difficult!  I feel so badly for the situation that you are going through, and cannot imagine how you must be feeling!   Finding out you are Poz is never easy (I'm only 2 weeks in) but I couldn't fathom the added stress of having my partner in the hospital for so long, and for such serious conditions.    My heart aches for you.....wishing you all the best and sending good thoughts your way!

Offline sh0reboy23

  • Member
  • Posts: 9
Re: Lots Going On
« Reply #11 on: June 07, 2012, 08:06:18 PM »
Thanks for your responses and positive energy. I'm definitely feeling faithful and confident that my partner will pull through this, although his mental status from the brain trauma & serious infections may have been altered, along with memory loss (according to the doctors).

Anyway, it is Day 75 (almost 3 months) since the ER visit/hospital admission. I really cannot believe I've been living alone all of this time. He still has the meningitis and is not very coherent, but has a rather drastic increase in his CD4 count. His CD4 is higher than mine, although the ID doctor made a point that it may not be all that accurate given everything else going on in his body.

I got his insurance approved! (yes, he did not have any) And the hospital has finally transported him to a long-term acute care hospital in the city. It seems like the medical staff is more on the ball in terms of presence for my partner, and rehab therapy will begin at that facility probably in the coming weeks.

I continue to pray everyday for his recovery and health restoration, and that he knows who I am b/c this is considered a disability and nobody knows the outcome due to the lack of research/knowledge on the infection. It absolutely worries the heck out of me what his reaction will be to me once he begins to get back on his feet. But, one step at a time I guess, right?

Offline sshortguy1

  • Member
  • Posts: 118
Re: Lots Going On
« Reply #12 on: June 07, 2012, 09:07:48 PM »
sorry that u have to go through that . hope every thing goes in the right direction and hopefully gets out soon
i commend you for having the strength to cope with it all b/c i certainly couldn't if it was my half

Offline wolfter

  • Member
  • Posts: 4,027
Re: Lots Going On
« Reply #13 on: July 05, 2012, 09:46:13 PM »
It's been a month, how are you 2 doing?  Hoping for an update.

Take care and best wishes.

Wolfie
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline forrest

  • Member
  • Posts: 162
Re: Lots Going On
« Reply #14 on: July 05, 2012, 11:07:02 PM »
It's been a month, how are you 2 doing?  Hoping for an update.

Take care and best wishes.

Wolfie

I second that  :)  Hope things are going okay (fingers crossed)... and toes....  :D

2011-03-26:  Tested Positive

Date           |VL        |CD4 |4%  |CD8 |8%  |C4:C8
2011-04-06 |48,653 |603 |32.0 |646 |35.0 |0.61
2011-05-23 |64,324 |577 |36.0 |576 |36.0 |1.00
2011-08-02 |18,319 |574 |36.3 |587 |37.2 |0.98
2011-12-06 |10,375 |480 |30.1 |616 |38.7 |0.78
2012-02-22 |  9,674 |570 |33.6 |655 |38.7 |0.87
2012-05-04 |  8,439 |559 |30.4 |706 |38.4 |0.79

Offline britchick

  • Member
  • Posts: 386
Re: Lots Going On
« Reply #15 on: July 06, 2012, 11:39:11 AM »
My heart goes out to both of you.I really hope that you are both feeling better.
Im thinking about you and hoping that you can give us an update when you can.

Britchick x

Offline darryaz

  • Member
  • Posts: 450
Re: Lots Going On
« Reply #16 on: July 06, 2012, 12:22:08 PM »
It's been a month, how are you 2 doing?  Hoping for an update.

Take care and best wishes.

Wolfie

I've been in touch with Sh0reboy pretty regularly.  Things are HUGELY improved.  I'll leave it to him to fill in the details, but the latest news is very encouraging!!!

Offline sh0reboy23

  • Member
  • Posts: 9
Re: Lots Going On
« Reply #17 on: July 09, 2012, 08:46:26 PM »
Okay, so now it's July. And my partner is awake! I swear this is a miracle, they never expected him to wake up from his coma. So initially with his mind where he left off and a ton of humorous dreams that he still was applying to reality, he continuously kept asking when he is going to be released. Well, the truth of the matter is, he needs to start walking and going to the bathroom on his own before we can have that discussion. The first thing he said to me was "I miss you." What incredible progress!

Towards the end of June, he was moved to a health & rehab center, where mainly elder residents are. Not the best health care, but definitely some great therapy and rehabilitation intentions on the staff's part. Although his feet are not flat to the ground when assisting him with walking (mainly moves from bed to wheelchair), it is great to be with him every step of the way and know that he believes he is strong enough to regain his muscle strength that was lost over the past 3+ months.

His eyesight is a bit blurred, but he can read/write perfectly and remembers literally everything (both short-term and long-term). He eats/drinks anything in sight now and I'm sure they will discontinue the feeding pump anyday now. The main downfall is he lost his hearing, but I am hoping with the care of an audiologist and/or ear doctor, that this will come back with time, since everything else seems to have.

He has come SUCH a long way, but has some more to go and I know that God is on our side. The positive energy and prayers that are being sent our way is very powerful.

Offline Stlguy1976

  • Member
  • Posts: 37
Re: Lots Going On
« Reply #18 on: July 09, 2012, 10:54:54 PM »
Shore - great news - glad things are improving.  I'm sure it is a great help having someone like you by his side.  Hope things continue to improve. 
Diagnosed: October 4, 2011
11/2/11 - CD4 21 2% VL 1,200,000 (started Atripla)
12/16/2011 - CD4 207 13% VL???
03/14/2012- CD4 148 11% VL UD
06/13/2012 - CD4 230 12% VL UD
09/27/2012 - CD4 220 13% VL
1/2/2013 - CD4 237 12% VL UD
4/27/2013 - CD4 251 12% VL 290
6/26/2013 - CD4 256 15% VL UD
6/26/2013 switched to Complera
10/16/2013 - CD4 278 15% VL UD?
1/18/2014 - CD4 308 VL UD

Offline Mrmojorisin

  • Member
  • Posts: 197
    • My Blog
Re: Lots Going On
« Reply #19 on: July 09, 2012, 11:20:49 PM »
That is fantastic news!! ;D I will continue to pray.
Started Meds On 5/1/2012 Norvair, Truvada, Prezista, and Bactrim

4/17/2012--CD4 83/ VL 353,000  7.0%
5/15/2012--CD4 218/ VL 4,970    14.1%
6/27/2012--CD4 146/ VL 420      6.1%
10/11/2012-CD4-223/ VL-62       9.5%
2/14/2013--CD4-215/ VL-119      13.6%
7/3/2013---CD4-256/ VL-UD       18.0%
10/18/2013 CD4-223/ VL-UD       22.2%
01/23/2014-CD4-381/VL-UD       25.3%

"arrrrhhhhh ahhrrhhhhh aaaarrhhh"- Chewbacca

Offline forrest

  • Member
  • Posts: 162
Re: Lots Going On
« Reply #20 on: July 10, 2012, 12:31:28 AM »
Great news Shore!  Thanks for the update!  What a long road for you guys huh?  Hang in there and hopefully this long road you've been on will just be a blip in the long road of life  :)  Take care!
2011-03-26:  Tested Positive

Date           |VL        |CD4 |4%  |CD8 |8%  |C4:C8
2011-04-06 |48,653 |603 |32.0 |646 |35.0 |0.61
2011-05-23 |64,324 |577 |36.0 |576 |36.0 |1.00
2011-08-02 |18,319 |574 |36.3 |587 |37.2 |0.98
2011-12-06 |10,375 |480 |30.1 |616 |38.7 |0.78
2012-02-22 |  9,674 |570 |33.6 |655 |38.7 |0.87
2012-05-04 |  8,439 |559 |30.4 |706 |38.4 |0.79

Offline britchick

  • Member
  • Posts: 386
Re: Lots Going On
« Reply #21 on: July 10, 2012, 05:03:29 AM »
sh0reboy23

Thats fantastic news.!!!!!!!!!!!

Britchick x

Offline wolfter

  • Member
  • Posts: 4,027
Re: Lots Going On
« Reply #22 on: July 10, 2012, 08:16:40 AM »
Awesome!   He is so fortunate to have you supporting him.  The struggles aren't over, but he has risen above the worst part.  Don't hesitate to reach out when you need support. 

Take care of each other and cherish your time together. 
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline sh0reboy23

  • Member
  • Posts: 9
Re: Lots Going On
« Reply #23 on: August 02, 2012, 07:19:04 PM »
I just want to let everyone know, never give up hope and the power of prayer. This was a near-death experience where a 4-week timeframe was given to my partner for his life because of the advancement of the HIV disease from the cryptococcal meningitis, and has ended up becoming a miracle to this entire region of the USA and rare turn around where he no longer has the meningitis in his blood and is finally being released from the rehab facility to come home NEXT WEEK :)

His CD4 count is HIGHER than mine (364) suddenly and is no longer AIDS standards. In addition, he is UNDETECTABLE, something that I am almost. While he has lost his hearing, we are confident a hearing aid will resolve the issue. The therapy has been so effective that he is able to walk again using a walker and is 100% there with his mind, body and soul. Our relationship is way stronger than it has ever been.

Only one life to live, we got to make it worth it. Keep the faith and love to those you care most about in your heart.


Offline justinslyriq

  • Member
  • Posts: 13
Re: Lots Going On
« Reply #24 on: August 02, 2012, 10:56:01 PM »
Congrats!

Offline wolfter

  • Member
  • Posts: 4,027
Re: Lots Going On
« Reply #25 on: August 03, 2012, 09:58:25 AM »
He is definitely past the worst part.  Has he met with an otologist?  I lost both vision and hearing to this disease and was able to regain a lot of both.  I had the cleaning procedure done on both ears as the swelling from the meningitis caused a severe blockage.  After the procedure, I slow gained my hearing to the point that I don't need aids.  They recommend one for my left ear, but I can hear well enough.  Some might argue though. ;D

I imagine you'll have your patience tested once he comes home and tries to improve his physical endurance.  It's a slow process and I'm sure he'll become easily frustrated and possibly direct that towards you.  I was a nasty little shit towards those who were loving and supporting me the most. 

3 years after almost dying from this illness, I'm mostly normal (whatever the hell that's supposed to be).  I'm still left with mild issues pertaining to this illness but it's mostly not too visible. 

Also curious, are his doctors recommending staying on the Fluconazole for an indefinite period of time?  My doctor originally suggested I stay on it forever because the body never entirely rids the fungus and it can manifest again.  After a year and a half I went off of it and have semi annual lumbar punctures to test for it.

Don't hesitate to email me if you have specific questions or need to vent.  It'll be a trying time for you both but I recognize the love you have for each other will lessen the affects.

Greg



Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline britchick

  • Member
  • Posts: 386
Re: Lots Going On
« Reply #26 on: August 03, 2012, 10:05:17 AM »
Hi sh0reboy23!

Thats great news.You will also have helped many people by telling us what happened and of the good outcome.Thanks so much for posting.

Best wishes to both of you 

Britchickx

 


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