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Author Topic: Received bad news on Friday  (Read 4567 times)

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Offline Christine

  • Member
  • Posts: 1,069
Received bad news on Friday
« on: November 18, 2006, 12:13:15 PM »
This has been just a really crappy week, and Friday was no exception. I went to the ophthalmologist at noon to make sure the CMV retinitis is being managed with the increase in Valcyte. Some background, I was diagnosed with cmv retinitis about three years ago, and it was managed and the virus suppressed well with no damage to my vision.

A few months ago, it flared back up, so the doctor increased the valcyte to 900mg 2x day. This time I had some vision loss in my right eye. I thought this past week it seemed worse. Like I was looking through a really dirty, wavy window in the right eye.

Well, on Firday I found out it had worsened. The cmv has flared up, and I have some bleeding on the retina.

My options are:
1. do nothing, go blind in the right eye;
2. have a permanent port for daily life long IV therapy;
3. have eye surgery where a small implant is inserted into the eye, and medication is dispensed directly at the retina for 6 months, then the implant needs to be re-done.

Here is a link to the surgery info:
http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/203488.html

So, there you have it. I chose to do the surgery. I don't want to go blind, and I can't deal with a port and daily IV's.

Right now I am sort of numb. I feel like things are just swirling all around me, and I can't get a hold on anything. Powerless I guess.

I have a pre-admission test on Nov 24, then the surgery is Nov 30. It is outpatient, I will be drugged but awake. Which scares me because I can't stand anything coming near my eyes.

I feel so lost right now. I keep thinking things just can't get worse, and things will improve, but they just keep getting worse.

Thanks for listening.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline thunter34

  • Member
  • Posts: 7,314
  • His name is Carl.
Re: Received bad news on Friday
« Reply #1 on: November 18, 2006, 12:20:37 PM »
I just read about your surgery.  I think that's the way I would go, too.  I'm sorry to hear you've had such a run of bad news lately.  I wish you the best with this and on...

~+
AIDS isn't for sissies.

Offline Razorbill

  • Member
  • Posts: 622
Re: Received bad news on Friday
« Reply #2 on: November 18, 2006, 12:31:01 PM »
Sorry you're struggling christine.  One thing you need to avoid is a port.  It's a bee's nest of trouble in and of itself.  I've had friends with them.  Go for the implant - I'm sure they'll drug you up well - the docs don't want you moving during the procedure.  Best of luck in whatever you choose.

Offline Longislander

  • Member
  • Posts: 2,486
Re: Received bad news on Friday
« Reply #3 on: November 18, 2006, 12:38:40 PM »
I hope all goes well for you with this. I'm also hoping the road smoothes out for you after this.

Here's one of those hugs, (((U))), and bunch of kisses, :-* :-* :-* :-* :-* that you may be needing right about now!

Keep us informed,
Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline Esquare

  • Member
  • Posts: 237
Re: Received bad news on Friday
« Reply #4 on: November 18, 2006, 12:39:03 PM »
I'm sorry to hear things have turned in this direction Christine. If faced with the same situation i would choose the surgery as well.  I'll be praying for you.

Offline anniebc

  • Member
  • Posts: 5,939
  • AM member since 2003
Re: Received bad news on Friday
« Reply #5 on: November 18, 2006, 01:37:25 PM »
Hi Christine

Given your list of options I think you have made the right choice...I have looked after patience who have had same problems and they have come out of it just fine, and I'm sure you will as well, I know it's scary but you will get through this...thinking of you,

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

Offline AlanBama

  • Member
  • Posts: 3,625
  • Alabama: the 'other' 3rd World Country!
Re: Received bad news on Friday
« Reply #6 on: November 18, 2006, 01:47:59 PM »
Hi Christine,

I'm sorry you are faced with these choices, but I think you have made the wisest one.    Will be keeping you in my thoughts and prayers.

hugs,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Christine

  • Member
  • Posts: 1,069
Re: Received bad news on Friday
« Reply #7 on: November 18, 2006, 01:51:11 PM »
Thanks everyone! I will need your thoughts and prayers, it is all just a little overwhelming right now.

Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline RapidRod

  • Member
  • Posts: 15,288
Re: Received bad news on Friday
« Reply #8 on: November 18, 2006, 01:56:29 PM »
I would have made the same decision as you Christine. Doing the IVs all the time is a pain. Good luck to you.

Rodney

Offline Life

  • Member
  • Posts: 2,388
  • Member 2005
Re: Received bad news on Friday
« Reply #9 on: November 18, 2006, 02:51:54 PM »
Christine....  Im saying my prayers that the surgery goes well and you can put this behind you..  Be strong young lady... You can do this....

Love and Prayers,


Offline Teresa

  • Member
  • Posts: 1,753
Re: Received bad news on Friday
« Reply #10 on: November 18, 2006, 02:58:34 PM »
Christine,

Good luck with the surgery. Know that you are in my thoughts and prayers!

Hugs
Teresa
Hubby HIV+ 5/5/06
CD4:320
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)
 

Offline frenchpat

  • Member
  • Posts: 516
  • Love your friends, don't eat them.
Re: Received bad news on Friday
« Reply #11 on: November 18, 2006, 03:15:40 PM »
Hi Christine,

I have no qualification whatsoever to give you any sort of advice, so all I can do is this:

(((((((((((((((((((((((CHRISTINE))))))))))))))))))))))))))

and let you know you are in my thoughts

Pat
People have the power - Patti Smith

Offline Robert

  • Member
  • Posts: 2,644
Re: Received bad news on Friday
« Reply #12 on: November 18, 2006, 03:49:13 PM »
sorry to hear about this christine.  I'll keep you in my thanksgiving prayers.


robert
« Last Edit: November 18, 2006, 04:12:32 PM by Robert »
..........

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: Received bad news on Friday
« Reply #13 on: November 18, 2006, 05:09:12 PM »
Christine,

Sorry to hear about the surgery but I feel like everyone else and you are doing the right thing by having it done. I am curious to why they are keeping you awake for the procedure. I know it's your eye but I would be nervous too. I will be praying for you and I know you'll come thru it just fine.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Eldon

  • Member
  • Posts: 2,664
Re: Received bad news on Friday
« Reply #14 on: November 18, 2006, 05:20:43 PM »
Hello Christine,

It is unfortunate that you are going this situation with your eye. Based on the options that you have shared with us, the better choice would be to go into surgery. Either choice you decide to make, I DO wish you the BEST.

You are in my thoughts as well as my prayers.


Make the BEST of each Day!

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 24,693
Re: Received bad news on Friday
« Reply #15 on: November 18, 2006, 06:14:46 PM »
Hi Christine,

I'm sorry to read that you have this to deal with, and I also agree that you have made a good choice among those offered.

What seems scary to you right now will gradually settle down. It's especially difficult when you are in the waiting period until the surgery when your mind starts running overtime with scary thoughts.

I do expect you're going to come through this ok. I'm also grateful you will be getting the help you need to deal with this.

Are there people around you who can hold your hand literally and figuratively during this time? 

You know you're in all our thoughts, Christine.

Cheers,
Andy Velez

Offline cubbybear

  • Member
  • Posts: 510
  • Joined August 2005.
Re: Received bad news on Friday
« Reply #16 on: November 18, 2006, 06:38:27 PM »
Hi Christine,

I can't add much, but I wanted to say that I'm thinking of you.
xx
Matt
There's a bear in there!
Positive since 2000
Diagnosed 17/9/2005 CD4 35 VL 293,000
Meds 23/9/2005 Sustiva/Truvada
Currently CD4 232 VL Undetectable

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: Received bad news on Friday
« Reply #17 on: November 18, 2006, 07:02:07 PM »


   Christine,

      I agree with the others and while the option is daunting, it's results far out weigh anything else that can be done.   The possibility of going blind in one eye just does not sound like an option I would want either.   I hope the best for you Christine.   Goodluck with the surgery.

    Thomas
I despise the song Love is in the Air, you should too.

Offline AIDS2HIV

  • Member
  • Posts: 96
    • www.aids2hiv.com
Re: Received bad news on Friday
« Reply #18 on: November 18, 2006, 08:44:38 PM »
well most wont say, perhaps they dont know...let me share with you some personal experience i have...i was diagnosed when it was in the late stages of the disease, OI's were in full swing, CMV being one of them....before i got so ill to land in the hospital, i had great eyesight, now i have to wear glasses, however, i have seemed to put my retinal damage at a stand still...My doctors were quite impressed with my knowledge. There i was in the eye specialists office, refferred to by my ID specialist, when they doctor said, "boy i just dont understand why your pressures are so low for CMV being in full swing"....i replied to the doctor, "its because i smoke weed to control the pressure in my eyes, when i start to feel the pressure mount in them i smoke a joint"....the doctor said..." Really? well as a doctor i shouldnt say this, but thats what is saving your retina, the pressure in the eye, caused by CMV ( and glaucoma as well) is what causes the retina to detach, rendering blindness, and marajuana does lower eye pressure".....i than said to the doc..." so then i can get some maranol?"...he then said to me, "it seems you have a better connection than i could give ya"

Honesty has its advantages....i learned alot from my doctors and what is beneficial to my overall health, by simply being honest about things. Smoke a phatty, and give both your eyes, and your mind a break from reality*  :)
Its the future of Hiv Education, and Resources www.aids2hiv.com      Got Community?

Offline Blixer

  • Member
  • Posts: 712
Re: Received bad news on Friday
« Reply #19 on: November 18, 2006, 08:51:59 PM »
Sorry to hear about your problems Christine.  It seems like you have gotten a lot of great advice here and some things for you to sift through.  You will be in my thoughts and prayers.  I'd probably feel the same way you do and want to go for the surgery.  Whatever you do, I'll be wishing you the best.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline cjc

  • Member
  • Posts: 1,011
  • Sweet Girl
Re: Received bad news on Friday
« Reply #20 on: November 18, 2006, 10:53:33 PM »
Christine, sorry to hear about your eye problems and the measures you are having to go through to get it fixed. Hope the surgery goes well and you get better soon. Cristy

Offline Basquo

  • Member
  • Posts: 3,257
Re: Received bad news on Friday
« Reply #21 on: November 19, 2006, 12:23:27 AM »
Eye surgery has come a long way in the past decade.  I see charts on similar cases often, and I've never seen one with complications during the procedure.  I'm sorry this is happening to you, and it's a shame you have to go through this, but I think you've made the right choice.  Take care!

Offline penguin

  • Member
  • Posts: 747
  • The Penguin Whisperer
Re: Received bad news on Friday
« Reply #22 on: November 19, 2006, 05:09:57 AM »
hope all goes well on the 30th - will be thinking of you.

kate

Offline ndrew

  • Member
  • Posts: 695
  • ....-.-.-.-.-.....
Re: Received bad news on Friday
« Reply #23 on: November 19, 2006, 06:45:54 AM »
Every letter of each of these words is a letter sent with care, hope and thought.

Kindest,
Drew

Offline Jena

  • Member
  • Posts: 101
  • To God Be The Glory!
Re: Received bad news on Friday
« Reply #24 on: November 19, 2006, 07:26:11 AM »
Christine
 I'm so sorry to hear about your bad news but I think you have made the right decision. As for being awake during the surgery, the medication they give you will make you not remember much afterwards. Hang in there honey, you're in my thoughts and prayers

Jena

Offline carousel

  • Member
  • Posts: 821
Re: Received bad news on Friday
« Reply #25 on: November 19, 2006, 07:49:47 AM »
.
« Last Edit: February 15, 2007, 10:11:29 AM by carousel »

Offline blondbeauty

  • Member
  • Posts: 1,784
Re: Received bad news on Friday
« Reply #26 on: November 19, 2006, 08:13:34 AM »
Good luck Christine, and trust your Dr.
Kisses.
Juan
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline joyluckclub

  • Member
  • Posts: 136
Re: Received bad news on Friday
« Reply #27 on: November 19, 2006, 08:51:16 AM »
Hi,

I'll be praying and thinking about you!  Hang in there!
"Honey, be who you is"  Madea.........

Offline Iggy

  • Member
  • Posts: 2,435
Re: Received bad news on Friday
« Reply #28 on: November 19, 2006, 09:52:51 AM »
.
« Last Edit: January 12, 2007, 07:35:07 PM by Iggy »

Offline Christine

  • Member
  • Posts: 1,069
Re: Received bad news on Friday
« Reply #29 on: November 19, 2006, 10:14:48 AM »
Thank you everyone! I can't tell you how much I needed to hear your good thoughts and prayers this morning.

My mind has been running overtime with the fear thoughts the past few days.

Andy- yes there are family and friends that will hold my hand. I am very blessed to have them.

Queen Akasha- I'm not sure why it is heavy sedation and not being completely knocked out for the surgery. I will ask that question at the pre-admission appointment.

Aidstohiv- Thank you for your experiences. I'm for anything that could help.

Thanks again everyone!
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Catman

  • Member
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  • Blessed with more than 9 lives! + since 1986
    • Who is the Catman?
Re: Received bad news on Friday
« Reply #30 on: November 19, 2006, 10:32:37 AM »
Heads up and good luck. Go bravely through that surgery because I would have done the same. Things like that scare the crap out of us but they really just make us stronger human beings, afterwards. It's really the unexpected unknown that gives us that scary feeling. I have a cousin who has gone through various eye surgeries only with local anesthesia and though he is awake, he said he felt nothing and was even speaking to the doctor. He had like 3 operations on his left eye. Life can really give some of us a hard time with health issues, but if we trip and fall, we can only just stand back up, wipe off our knees and continue walking...you are in my heart and prayers during this ordeal, girl. You are backed up by all of us on this forum who wish you the best for a quick and successful surgery.  :-*
Catman

Meow to the birds
Meow to the tree's
Meow to the end
of this dreadful disease...

Offline RevMC

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  • It's me!
    • Psychic AwakeningSchool.com
Re: Received bad news on Friday
« Reply #31 on: November 19, 2006, 11:47:54 AM »
Everyone has already said what i'm feeling.

Just wanted to let you know that your in my thoughts and prayers.  I'll add your  name to my Prayer Chain on my website for you.

May god watch over you and help  you through this.

Love and Light,

Rev. Michael
Part of my story: "Sale Of A Lifetime" POZ December 2003
http://www.poz.com/articles/172_752.shtml

Started on Truvada and Viramune on 2/15/07

Jan 8, 2007   t-cells 215  Viral Load 10,000  24%
March 26'th  T-cells 306   Viral Load  UNDETECTABLE
June 2007 t-cells 375 Viral Load UNDETECTABLE
August 2007 t-cells 290 Viral Load UNDETECTABLE



Love and Light and Reiki sent your way,
Rev. Michae

Offline newt

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  • the one and original newt
Re: Received bad news on Friday
« Reply #32 on: November 19, 2006, 05:51:32 PM »
Bugger, CMV, good luck

- matt

Now playing: Damien Rice, Elephant
"The object is to be a well patient, not a good patient"

Offline aztecan

  • Member
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  • 29 years positive, 57 years a pain in the butt
Re: Received bad news on Friday
« Reply #33 on: November 20, 2006, 09:12:26 AM »
Hey Christine,

The daily dose of Cytovene is no fun through a port. I had a friend who did it, and did OK with it. But I agree, I would probably opt for the surgery.

I am sending you much positive, healing energy and will be keeping you in my thoughts.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline david25luvit

  • Member
  • Posts: 1,409
  • Member since March 2005
Re: Received bad news on Friday
« Reply #34 on: November 20, 2006, 11:04:17 AM »
You're in my prayers Christine..........
Sending you lots of ((((( Good Vibes ))))))

Hang in there sweetheart :-*
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

Offline Christine

  • Member
  • Posts: 1,069
Re: Received bad news on Friday
« Reply #35 on: November 20, 2006, 01:31:28 PM »
Again, thanks everyone! I am going to print out all your kind words and take them with me before the surgery to keep my strong and focused on a positive outcome.

Big hugs and kisses to all of you!
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Lakis

  • Member
  • Posts: 83
Re: Received bad news on Friday
« Reply #36 on: December 15, 2006, 04:03:34 PM »
Hi,a friend of mine did surgery and was doing great.So that's what I would do.Whatever u decided GOOD LUCK!
Lakis

Offline Ihavehope

  • Member
  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Re: Received bad news on Friday
« Reply #37 on: December 15, 2006, 04:09:00 PM »
although i don't know you Christine. I send you my love and prayers. You will be ALL RIGHT.

You a strong lady you will do just fine!!!
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

 


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