POZ Community Forums
Main Forums => Living With HIV => Topic started by: Christine on November 18, 2006, 12:13:15 pm
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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
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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...
~+
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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.
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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
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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.
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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 :-*
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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
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Thanks everyone! I will need your thoughts and prayers, it is all just a little overwhelming right now.
Christine
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I would have made the same decision as you Christine. Doing the IVs all the time is a pain. Good luck to you.
Rodney
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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,
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Christine,
Good luck with the surgery. Know that you are in my thoughts and prayers!
Hugs
Teresa
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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
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sorry to hear about this christine. I'll keep you in my thanksgiving prayers.
robert
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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.
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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!
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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,
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Hi Christine,
I can't add much, but I wanted to say that I'm thinking of you.
xx
Matt
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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
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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* :)
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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.
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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
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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!
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hope all goes well on the 30th - will be thinking of you.
kate
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Every letter of each of these words is a letter sent with care, hope and thought.
Kindest,
Drew
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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
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Good luck Christine, and trust your Dr.
Kisses.
Juan
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Hi,
I'll be praying and thinking about you! Hang in there!
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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
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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. :-*
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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
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Bugger, CMV, good luck
- matt
Now playing: Damien Rice, Elephant
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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
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You're in my prayers Christine..........
Sending you lots of ((((( Good Vibes ))))))
Hang in there sweetheart :-*
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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
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Hi,a friend of mine did surgery and was doing great.So that's what I would do.Whatever u decided GOOD LUCK!
Lakis
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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!!!