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ScotCharles
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Legend
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Reged: 05/06/05
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Loc: Los Angeles
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Loss of cognitive function
#184185 - 04/04/06 09:26 AM
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Friends, I believe I am losing my ability to think.
As I have posted here, my liver is going haywire due in large part to the meds I take. Reyetaz is causing my bilirubin levels to rise, causing my eyes to take on a yellowish cast and my skin to have a greenish tint.
But the worst of it is the rise in iron levels or ferritin. The liver specialist thinks it is due to a hereditary condition called hemachromatosis, which causes the liver to store iron, but he finds the normal iron binding ability of my blood cells which soak up the non-liver iron to be non-symptomatic of hemachromatosis. My HIV specialist believes that I am experiencing a side effect of the Norvir and Reyetaz combination I take.
For now, the doctors want to stop bleeding me to control the ferritin levels to see how high the iron levels will go before they stabilise; and, I am willing to go along with them. Bleeding is a nasty business that leaves me exhausted for days and I would like to find an alternative.
However, the high ferritin levels cause my joints to ache and dulls my thinking ability. This is of course on top of the brain damage done to the center of my brain by HIV, which makes me unsteady on my feet as well as makes it difficult for me to drive in heavy traffic.
While none of this is life threatenting and I am not yet drooling, I must admit I find the prospect of losing my ability to think extremely frightening. I know I have posted that people with HIV/AIDS must live in the NOW and let the future take care of itself, but I am having a hard time dealing with this new set of issues.
My HIV specialist tells me he has patients far worse off than me, to take heart, and believe that soon a way through this problem will be found. But, yesterday my boss sat me down and asked me what was going on with my work, she had noticed a marked decline in quality and she said I was often incoherent in my oral factual presentations. Some years ago when I was in hospital with PCP, I told her that I have AIDS .
This is frightening stuff, friends. The Americans with Disability Act will protect my job; I have no fear of being fired. However, just now I had a hard time reading an article in the Financial Times and I found yesterday that I could not analyse a section of a pension plan document in a case I am preparing for settlement negotiations.
I'm not asking for sympathy, I just wanted to share this with you. It does help that I can still write a good sentence. I suppose that after nearly 21 years with HIV I should be happy that this little problem is all I am facing (this year's Labor Day will be my 21st anniversary with the virus).
Lux eternum,
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Life is a river.
Carpe diem.
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firefly
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Guardian
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Reged: 01/22/06
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Posts: 431
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Loc: Orange County, Calif.
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You wrote a beautiful post! I understood all of it! You are not losing your ability to think! ((((HUGS)))) ......and who lit your boss's tampon on fire? I will pray for you! You are in my thoughts!
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You are a diamond in the rough !
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Bear60
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Charles.... Firefly said it all. There is nothing wrong with your post at all. But I suppose its different when reading something that you have to analyse. Take care my dear. By the way did you see the restored version of" LIZA With A Z" that premiered on TV this past weekend (Showtime).? Its going to be out on DVD real soon. I loved it. I real trip back to the early seventies.
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6 ft tall poz bear in Philadelphia
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ScotCharles
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Thanks, your thoughts are important to me.
"All you need is love. Love is all there is."
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Life is a river.
Carpe diem.
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ScotCharles
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Legend
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Sob. You reminded me of some friends who are no longer with me who I saw that show with in the seventies. Ah well, life is a river flowing to the sea; I will survive, as Donna Summer sang. I can still remember the joy of abandonding myself to a disco beat on a dance floor crowded with young gay men, many of whom are gone now.
Gracious, I AM maudlin this morning. I need to give myself a good slap and get on with it.
Thanks, friend.
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Life is a river.
Carpe diem.
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firefly
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Guardian
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Ok bend over for your spanking.......We love you !
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You are a diamond in the rough !
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I'm so glad you posted. I've been dealing with loss of cognitive function in the last couple of years. I got my Dr. to prescribe, wellbutrin, which is not only an antidepressant-smoking cessation drug, but also has brain stimulant capabilities. It did help, but the side effects made me want to climb the walls! I was able to start to comprehend what I was reading better. I then asked my Dr. to prescribe, provigil, which also helped, but once again the side effects wore me out. What I am doing now is making lists of everything, trying to avoid situations where there is "input overload" and giving myself permission to process things in my own time. It is difficult, but it is just "the hand I have been dealt". Play it the best you can.
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Charles, You sounded pretty lucid to me. I pray that you will make a speedy recovery. Maybe your boss was just PMSign. Some people can't relate until they are bought down from their ignorance. Be well, my friend.
Charlene
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HIV is a part of me, but it does not define me!!!
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ScotCharles
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Thanks, I was taking Gingko, but my heart couldn't stand the stress it puts on the circulatory system. Once the docs figure the ferritin thing out, I should get better. The HIV induced brain damage, should reduce as well, so long as the HIV induced deterioration is not progressive.
Yep, when you get dealt a crap hand, you either bluff your way out of it or you fold. I've never been a quitter.
Peace,
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Life is a river.
Carpe diem.
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Survivor
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Legend
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Loc: Get off the fence and live again!
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Chuck... You changed your picture from a big fat lady to a sexy hunk of a man. Your skills in my mind are perfect and your taste in men are satisfactory.. What else do you need?
Chuck, have you considered other opinions besides your current specialist?? I know you are seeing those Hollywood boys, but maybe if you get off the strip you may find a better alternative... Your ability to think above most normal folks like me is profound. I for one am thankful that I am now just be able to comprehend your posts and even learn from them..
I hope you are doing better and I know this is frightful, but you still got it Chuck!
Love You Always!
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hi ScotCharles, I will visualize for your speedy and steady well-being soon! Take care and thanks for being an inspiration and pillar of strength!
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You Are What You Tolerate.
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ItsFaith
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Legend
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Charles, lately I am at a loss for words. I find myself wallowing in sorrow...not only for myself but for others as well and I dont like to cast a dark cloud so I try to keep my mouth shut...but I had to chime in. In the few months I have been reading your posts I can assure you...that you operating at 50% will far surpass so many of us "regular" people! You astound me with your insight and your depth. I'm sorry that things are kinda rough on you right now....I will pray that you find your way through these dark times. keep doing what you are doing.....don't give in or give up.....keep using your mind and keep yourself sharp as the tack that you are. things will turn around for you.
Love and prayers.
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ScotCharles
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Legend
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Thanks. I'm certain I'll be OK, but, shit, you know?
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Life is a river.
Carpe diem.
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Survivor
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Legend
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Reged: 10/30/05
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Posts: 3256
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Loc: Get off the fence and live again!
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see i can understand that - - - shit... I love you just the way you are Chuck!! Speaking in trailer trash works very well for me!!!! Bro...
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Dear Scott;
You write brilliantly, and your articulation seems to indicate
that you are still functioning relatively well. However, I can more than empathize with you. After surviving 18 years with HIV, and attendant problems such as Hodgkin's Disease; Lactic Acidosis; Hypothyroidism; Autonomic Neuropathy;
and of course Peripheral Neuropathy, I am now becoming aware of a slowing in my cognitive ability. I can no longer remember a telephone book of numbers at will, and geez, I couldn't even remember the name of my doctor last week.
Losing mental function is indeed scarier than all other maladies put together. However, we must maintain hope that we can find a way to halt this decline and retain a positive quality of life.
I see so much of myself in your posts. I'm also a financial person.... an MPA and former Pension Manager with a government bureau. At age 43, I'm also determined not to give up.
Let's keep on posting and supporting each other. And by the way, don't just be happy with the fact that you can still write a good sentence; keep on fighting for the best quality of life you can sustain.
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