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Author Topic: Im breaking down  (Read 3476 times)

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Offline snoofle

  • Member
  • Posts: 54
Im breaking down
« on: November 02, 2011, 10:13:26 PM »
It has been a while since I last posted about my boyfriend. He was doing pretty well the past few years, but just recently he landed back in the hospital after suffering some terrible headaches. About two weeks ago, he was admitted to the hospital his infectious disease doctor is affiliated with and for 9 full days, he was in the hospital where all they did were 3 CTs!! On the CTs, they found a 1cm cyst on his left temporal lobe. The docs kept saying, a lumbar puncture or brain biopsy would be needed to determine what it was, but nothing was ever done. We were flabbergasted, b/c he was feeling lucid and normal, just sitting in a hospital bed and constantly begging his ID doc to provide some answers or at least a realistic timeline for tests. Anyways, his ID doc ended up not communicating anything to him at all and my boyfriend left the hospital with no resolution.

Fast forward to this week, after suffering from these headaches for 2 wks, he started acting a little bit funny..he wasn't completely "there"..like saying things that didn't make sense or losing sense of time and space. So I took him to the ER of a different hospital and they admitted him immediately to their neurology floor, b/c of his diminishing mental capacity. They did a lumbar puncture and are tentatively ruling out toxoplasmosis and crypto. The docs decided a brain biopsy would be necessary to determine what this thing on his brain is. He is scheduled for his biopsy tomorrow morning. His mental capacity is scaring me every day, b/c I'm sooooo scared that the docs won't be able to reverse it/fix it. I am trying to stay optimistic, but I can't help but be scared. Please just include us in your prayers and hope that everything is treatable with no long lasting issues.

Offline 47DegreesNorth

  • Member
  • Posts: 22
Re: Im breaking down
« Reply #1 on: November 03, 2011, 12:56:58 AM »
It's like you posted this last night. How did his test go this morning?

I'm so sorry to hear about this. I am thinking about you guys... Sending positive thoughts your way.

Please give us an update!

Offline snoofle

  • Member
  • Posts: 54
Re: Im breaking down
« Reply #2 on: November 03, 2011, 11:53:38 AM »
They finished his brain biopsy and prelim said it was probably infectious in nature..doesn't look like cancer. When I got back to his hospital room, the doc showed me his most recent CD4, which dropped to 39. This is so scary, b/c about 2-3 wks ago, he was at 750. However between Oct 18-31, he was not taking one of his meds, Truvada, b/c he had run out of it completely and did not have insurance to get anymore..so I'm wondering if this could drop his CD4 so exponentially??

Just keep him in your thoughts and prayers.

Offline snoofle

  • Member
  • Posts: 54
Re: Im breaking down
« Reply #3 on: November 06, 2011, 03:57:37 PM »
The docs.figure that he has PML from the JC virus. Everything I've read is pointing to something terrible. he has lost his personality and is really a shell of who he was. I hope that it takes him fast and without pain bc I don't want to see his mind deteriorate to nothing. Please pray for us.

Offline Growler

  • Member
  • Posts: 554
Re: Im breaking down
« Reply #4 on: November 06, 2011, 04:25:05 PM »
Nothing I can say will make this time easier for you. Just want you to know that you both are in mine and I'm certain, many other members of this forums thoughts. Take care of yourself mate.

Joe
“If loving someone is putting them in a straitjacket and kicking them down a flight of stairs, then yes, I have loved a few people.”

Offline hope_for_a_cure

  • Member
  • Posts: 1,483
Re: Im breaking down
« Reply #5 on: November 06, 2011, 05:43:01 PM »
My thoughts are with you both!!  Find as much strength as you can right now to do what you need to do (on your part).  Its out of your hands actually at this time and in the hands of doctors and other medical staff.  The body is amazing so do not rule out a recovery yet. 

As Growler said...'take care of yourself'.

Offline anniebc

  • Member
  • Posts: 5,885
  • AM member since 2003
Re: Im breaking down
« Reply #6 on: November 06, 2011, 07:14:46 PM »
I am so, so sorry to hear this, I've heard that if the patient can improve his immune system it helps a little with the PML recovery but unfortuanately not to full recovery, this is not going to happen, but I'm sure you know that already.

All you can do it support him in whatevr way you can and be his strength...prayers and thoughts go out to you both.

Aroha
Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline wolfter

  • Member
  • Posts: 4,027
Re: Im breaking down
« Reply #7 on: November 06, 2011, 09:24:55 PM »
Sending postive thoughts your way.  So sorry you're both dealing with tragic news. 
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 snoofle

  • Member
  • Posts: 54
Re: Im breaking down
« Reply #8 on: December 30, 2011, 12:48:26 PM »
I wanted to update everyone who was sending their positive thoughts to us. God really did grant us a miracle, b/c after the doctor said he thought it was PML from JCV, the final biopsy results came back negative for everything under the sun, including JCV. The final diagnosis was HIV invading the brain due to his low CD4 count. He is pretty much 100% now, has gone back to work, and is doing 1000x better (no more headaches!).

I decided to contact his old hospital where his old ID doc was affiliated and I obtained all the doctors notes and lab results from them and saw that they had got a CD4 of 650. His new hospital and ID doc got a CD4 of 39. His new ID doc said there was no medical possible way for his CD4 to drop that low in less than a month, thus suggesting that the lab at his old hospital made an error.

We've tried contacting attorneys to file a malpractice suit, but funny thing is, that unless he would've died or stayed in a mentally diminished state, then they won't pursue a case. I wish there was a way to let his old doctor and hosiptal know how incompetent they both were. But I guess that's how the cookie crumbles sometimes.

Thank you to everyone that thought about us and kept our situation in your prayers.

Offline MiniPozToyota

  • Member
  • Posts: 203
Re: Im breaking down
« Reply #9 on: January 01, 2012, 01:06:31 AM »
glad everything came around for him and you, I hate how hospitals do stuff like that and say its not there fault, happened to my step dad after they game him to much pain meds and cause heart failure, they had to reduce the pain meds and caught it just in time (he isn't positive) he went in for his spline and fluid in his lungs then ended up with heart failure... he is doing good now, but stayed in the hospital for about 3 weeks, anyways im glad you two are doing good and he is back working, I would keep up with law suit though or talk to another lawyer.
April 2010- tested neg.
Oct-Dec 2010- Came in contact time frame
March 29 2011- tested positive
April 1 2011 -  CD4 346 VL 46856 22% (Hometown hospital)
April 10 2011-  First Actual Appointment
April 11 2011-  CD4 576 VL 11898  44% (Out of state hospital)
May 09 2011- Genotype test no resistance
Jun  02 - CD4 363 VL 22,850  (Hometown hospital)
July 11 2011 - CD4 372 @25% 41,000 (Out of state hospital)
July 27 2011- Started Atripla
Sept 1 2011- CD4 485 VL 73
Oct 17 2011- CD4 389 VL UD @ 25%
Nov 21 2011- CD4 424 VL UD @ 31%
Mar 12 2012- CD4 504 VL UD @ 35%
May 14 2012- CD4 630 VL UD @ 43%
Aug 17 2012- CD4 689 VL UD @ 45%
Nov  6 2012 - CD4 659 VL UD @ 42%
Dec 17 2012 - CD4 859 VL UD @ 48% (out of state hospital)
Mar 18 2013 - CD$ 867 VL UD @ 44%

 


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