My ID doc saved my life twice

[em]

I had gotten on a trial for a new drug called norvir.
The drug was given to me in a vile that I was told tasted like caramel?
Ya it tasted like caramel dipped in tar.

MY t-cells were gone my last t-cell count was 7 before the drug trial. there was an opportunistic infection feast go on in my body.  But yet I dragged my near dead carcass up to this hospital an hour and half drive from were I lived.  But with this new drug my ID doc had gotten me to test my life was saved from dying .

This new drug saved my life . Then a few years later after the trial was over I got my prescriptions and my health care through the VA. My ID doc told me to get a refill of my norvir from the pharmacy. I handed the prescription refill to the the pharmacist. He  looked at the script and simply said  NO!

I went back to my ID doc and said the pharmacist said NO ! He told me to come with him and he knocked on the pharmacist door and said something I could not make out. Then the pharmacist said to my ID doc " do you know how expensive this stuff is " My ID doc said fill it. now some years later I am still alive thanks to him.

They made him chief of staff he married and then retired I have no idea were or what he is up to I am just thankfull he was able and willing to save my life those two times.

Now with new vaccines on the horizon I just hope I live long enough to see one of them free us all from the virus and people of the future from living with and  fearing this illness the  way we have had to do .

just wanted to write something before the entire HIV AIDS crises ends and no one knows how close death was there at least for me anyway.

sorry for writting so much
I hope everyone the best
EM

[em]

sorry
I forgot to say this was in the mid nineties

[Ptrk3]

Thanks for sharing your story.  It's good to document this history for all of us.

I'm glad you're still here and hope to stand alongside you when a cure comes.  My CD4 was 7 (with PCP) when I was diagnosed 13 months ago, so I know what it feels like to be so close to death.  I'm UD now with CD4's rising slowly, but rising.

Best wishes to you, too, and continued good health.

[leatherman]

ah norvir. disgusting vile gasoline-based medication. I used to hide two huge bottles of it in the back of my frig. Finally it came in gel caps, delivered in beautiful mylar bags with frozen gelpacs inside.

(I actually have 1 mylar bag left and several freezer gelpacs in the freezer. I used the other bags for Christmas gifts - slap a bow on it and call it gift wrapping LOL And the gelpacs come in handy whenever I go on a trip to the state capital for an advocacy event. They keep my Cokes nice and cold!)

No matter what I did, I could usually tell when that gelcap exploded in my stomach and often it only took 30 mins before I puked. Ugh! Finally the glorious day came just a few years ago when norvir was finally put into tablet form. I haven't had an issue since- although once in a while, I think I might get the queasies from it.

Thanks for being a great guinea pig, em.

[Jeff G]

Hey PTRK ... this section is for us that were diagnosed before 1996 . Please feel free to read this section but you can't post here . No harm done , now you know . 

[Theyer]

Thanks em, important story well told . I am sure I was on Norvir fact is been on so many I have forgotten what I have been on. Its been a long haul .

[AlanBama]

hi em

My I.D. doctor also saved my life, on SEVERAL occasions in the 90's.  Luckily, I can still follow him on facebook.  I sure miss having him as my physician, and will never forget what he did for me.

That Norvir was some NASTY STUFF.  My partner and I tried every trick in the book to "ease" the disgust of swallowing that vile mess, all to no avail.  I finally just learned to hold my nose and swallow it, then deal with the consequences.

HUGS TO YOU, Alan



H

[em]

now that I had a chance to think about it . The medication was in a bottle like a plastic flask. The dosage was in a tube like the ones for children liquid medication.


A major illness I had endured

Another time that sticks out in my mind was this fever that I had. I went to the local hospital and the doc gave me some antihistamine and told me this hospital did not have an HIV outpatient clinic ? So I went home and got real sick then I went to the VA were this doctor had been sleeping and said if I had been drinking I was going to be in big trouble. By this time I was throwing up bile and sweating like no end from the fever. Well anyway they admitted me and put me on a cool down blanket. I woke while this nurse was cleaning my back side cause I had crapped the bed. I started to cry, I could see my hand but could not move it , I was thinking messing the bed like that usually means death. The nurse rubbed my shoulder and said it is all right. I think it was some sort of neurological infection. there was some sort of infection in my nervous system ? My uneducated guess?

A friend had stopped by to look in on me and he started to talk then got angry and said if you are not going to respond then I am leaving. He just did not know I could not move.

I recall watching the flag furl in the breeze in a rhythmic wave that soothed my mind thinking this was not as scary as I thought it was, there is no pain, as I lay there deep in thought. Then after what seemed like days cause it got dark then light then dark again. I could not tell how long I lay there. mean while this social worked kept holding my hand and watching me. I had thought if this guy wanted to do anything to harm me there was nothing I could do. Then I thought maybe he was an angel come to take me away.

Then after what seemed like forever I had sat up rapt a sheet around me and asked the nurse that was sitting at a desk near the bed were is the bathroom. ( I had thought maybe she was on death watch waiting to see me take my last breath) I got back from the bathroom and MY ID doc showed up looking kind of surprised and flustered at my condition. I had said I was very hungry and he had them get me a sandwich I ate it in two bites egg plant Parmesan that I do not usually like. I was so hungry. I could have eaten anything.


well any way that was twenty years ago. I hope the future is way better. I doubt another infection like that I could survive.

I do not credit my ID Doc wiht saving my life I just think I had a bit more living to do ? I do not know? What I do know is I am alive.

thanks again
EM

[Lostandscared]

Thanks for sharing your story.  It's good to document this history for all of us.

I'm glad you're still here and hope to stand alongside you when a cure comes.  My CD4 was 7 (with PCP) when I was diagnosed 13 months ago, so I know what it feels like to be so close to death.  I'm UD now with CD4's rising slowly, but rising.

Best wishes to you, too, and continued good health.

My boyfriend was just diagnosed with AIDS and Pcp almost three weeks ago. His CD4 count was 19 not sure what it is now. Could you possibly share your story with me. I'm needing some hope right now.

[Joe K]

My boyfriend was just diagnosed with AIDS and Pcp almost three weeks ago. His CD4 count was 19 not sure what it is now. Could you possibly share your story with me. I'm needing some hope right now.

This forum is for those diagnosed prior to 1996 and you are not allowed to post here.

Thank you for your cooperation.

Joe

[Theyer]

Time distorted by illness plus loss off bodily functions , both leave me with a kind off emotional hangover , glad to say I get over them far quicker now .

one nurse replied to my fearfull musings on time lost with " darling what is there to remember ? "

That helped me.

I often think there's a book in all this , along the lines off

How to get the Most Out of your Hospital Stay

[Mishma]

Count your blessings.

At times I thought mine was trying to kill me-or at least that is how I felt. All the big things I caught myself including a widow maker. Unfortunately at this point in my life I don't trust anyone, including myself but especially Big Pharma.

There are many, many sharp people on this blog including the moderators; avail yourself of their expertise and experience, because I hate to say it, you've got to look out for number one yourself; don't expect the ID doc to catch everything.

[em]

count my blessings

I would rather rant about what's wrong and dwell in the negative so the positive will taste so much sweeter.

Well I had this long winded thing about my life and thoughts.

Maybe another time.

I will take my night time  pills sleep for ten hours and forget  I even wrote anything .  give the sustiva the time to  reek havoc with my dreams.


O ya merry Christmas

all my best to you

EM

[em]

almost a new year who would have thought some of us would have lived this long and how many others we have lost along the way. a hope and a prayer for better times ahead

HIV has come a long way in the world and still has a way to go still. until it is no longer the nasty little thing it once was to the burden it still is then until it is only a long distant memory.

 Like others before it  small pox syphilis polio leprosy typhus cholera, just a few examples. they may still be around but not sickening killing the numbers they once did.

so have I, come a long way along with the burden of maybe the other part as well  causing sickness and then death while trying to find love. Maybe not the path I dreamed of as a child but still not the worst life lived. Love is a part of life and living  I would think does anyone want to live in a world without love . But before I myself am long distant memory.

I would like to say this about life before during and after HIV
 
long and difficult in some respects but easy in others, a balancing act between the good and the bad sickness and health richer and poorer like a living vow to be lived and loved  enjoyed and rejoiced even with and through  the pain and sorrow.

sorry was just day dreaming of times long ago before the burden of carrying the load known as HIV

Maybe some other time and place I will share some stories about  living and loving in the age of AIDS after I know that my HIV gift given and received did not leave a path of destruction in my wake is still fresh in the minds to people who know me  as I traveled the road of life. Is my self imposed seclusion and exile really my own or guided by guilt.

Was my life worth saving after I may have spread the virus unknowingly ? while trying to live love and rejoice in the world we exist in.

were and when I got it and who and or what (as in man or woman opposite or same  sexes and  their unborn children they may or may not have had )   I may have given it too I think at times we all may ask these questions. But  it was here before me and will be here after I am long gone.  with out my controlling it and deciding what it will do this thing called disease whether in the air water food or our bodies some times life finds a way to be cruel in the cruelest of ways. the casualties of a war never waged.

 questions sometimes many , answers sometimes few and even sometimes both are unknown

was it worth the price of admission and the ups and downs I think so
 
sorry just some drifty pointless rambles from an old tired man.

side bar :
The book the ballad of typhoid Mary comes to mind a friend with HIV a long time ago
 suggested I read that book in the forward it said written by a daughter after finding her fathers journals it does not mention HIV but does seem to be very suggestive of it.

thank you for this place to share my thoughts

just the drifting thoughts of tired old crazy person

all my best to you

EM