Diagnosis unfolding

[scavenaugh]

Hi all. What a great site this is. Thanks for sharing your experiences and fears and solutions.

I have a couple of questions surrounding my story: I am (was) a healthy gay male. After a couple of weeks of typical flu-like symptoms, relentless fever and fatigue I developed a tangerine sized lump near my collar bone. My Dr ran many tests of which HIV seemed to be the culprit (Lymphoma biopsy and CT scan came back negative). Needless to say the shock and stress I felt over any potential diagnoses was worrysome, and certainly did not help my health during those weeks. I contacted the few sexual partners from the past year and they tested negative, thank god. I have received anal sex from someone I knew was positive but I used a condom. Once I didn't, and even though he didn't ejaculate in me I contracted HIV somehow. I was tested thereafter (18 months ago) but it was negative; life went on as usual up until a few weeks ago.

Concerning my numbers, I am reading so much that scares me. My first CD4 count was 247. A week later, one week ago, my CD4 count fell to 177 (which was probably lower since the blood sample was taken a week prior), and my viral load was 500,000. I have read that an AIDS diagnosis is when CD4s drop below 200. I was floored but not surprised because I have had a flu for weeks now. I mean a really painful, chronic, weird fever flu with a nasty cough and that lump is just hanging out there near my neck growing larger when I have a fever. When I think about it I have been tired for months now, but I thought it was just the winter blahs. I just don't know what is happenning to me. It is all so fast. And when I think too much about the battle that is happenning inside me it is easy to get discouraged and angry at myself for contributing to statistics and thinking I was invincible. But I know I cannot manage any disease with that attitude...

So I started meds the day I learned about the CD4 drop and am just curious about other folk's experience with rebounding from such bad numbers.

Thanks everyone!

[SPECTACULAR]

Hi there, unfortunately, I don't have any helpful advice on the CD4 numbers...but, I'm sure someone will come along and offer some knowledge and advice.

I just wanted you to know that this is a great board with loads of nice and helpful people... I hope you come back often.

God bless,
Cali

[choctaw_n_ok]

Hi scavenaugh !..

I just wanted to post a sincere hope that you start feeling better soon ! I cant imagine how awful and run down you must feel !...There are some many nice and knowledgeable people on here that can give you a huge shoulder and informative views and answers ( lots of opinions too !)


prayers !

deana

[last1]

Dearest Scavenaugh: When I was first diagnosed twelve year ago, my doctor (who is also one of my dearest friends) gave me at least one mantra for living: the numbers are only numbers, they neither reflect who you are nor how you feel. It was sage advise but not always advise I have taken to heart. I do get freaked out when the numbers (T-cell) dip and elated when the rise. When first diagnosed, my t-cell count was 200. It remained 200 for eleven years (viral load has always been undetectible) although the t-cells took a staggering dip to 84 last year. At that time, I began seeing a brillian hematologist/oncologist to help evaluate and treat my anemia. He determined that much of my problems with anemia was related to an enlarged spleen. Six days in the hospital, my spleen removed and my numbers began to climb (remember I'm not concerened about the numbers. Yeh, right!) and reached an all time high of 244. Now, did I go from having AIDS to not having AIDS? I just don't know and besides, it's all in the definitions. I simply can't define who I am by this disease. Know what I mean?

I started on meds right away - AZT, ddI, etc. and now I am on Truvada, Norvir, and Rayataz. While I still have some issues with anemia they are attempting to find out if my bone marrow is depressed (Holy Crap, I know I am!) or if I have an ulcer. I mention these anemia issues because what you have described is certainly indicative of that issue for me. Have you had a CBC lately?

We all think we're invincible, you know. And, by and large, we are. And, since people started 'living' with HIV, we all began to think that it's controllable. And, by and large, it is. But, there are these bumps-in-the-road, aren't there? And those bumps-in-the-road take a very heavy toll on our emotional and spiritual well being. (I have a friend who has been HIV+ for twenty years and jsut developed lymphoma. He is absolutely amazing! He is beacon for all of us who freak out with wandering lab values. I wish I could bottle his stamina, humor, and spirit!)

I think that your decision to take the meds is wise (despite that awful essay in Harper's Magazine last month!) and prudent. ANd, since you are in the Bay Area, I just know that there is more going on out there than just about anywhere.

There is so much more I want to add here but, for the time being, I want you to know that we are all rowing this boat together. You will be a wondrous rainbow for your friends and your family. Surround yourself with love, music, poetry, basketball, dogs, mint chocolate chip ice cream, Cioppino, whatever brings you joy.

We will be in the city in May, then driving to Carmel and Pacific Grove, and then returning to the city for four more days before flying back here. Whenever I am in San Francisco, I glory in just being there. We always hang out at City Lights, Sausalito, Grace Cathedral, and indulge ourselves just enough to get us through the next year or so. I will thinking about you and know that you will manage to get through this. love, chris

[scavenaugh]

Wow, thanks everyone for your kind, thoughtful and encouraging words. I am feeling much better after reading your responses, thank you.

In such a short time since being diagnosed I am realizing the importance of living in the moment and not focusing on what I can't control. I can't change the fact that I have this disease. This disease probably doesn't even want to kill me because then it would die too, so I decided I will try to co-exist with it instead of deny its presence. Last night I meditated on this idea and later my body felt much better. My fever disappeared and I could think clearly again, which was a great gift since I have been torturing myself the past couple of weeks. And I didn't think about my numbers either . The battle inside that I have probably been fueling more than necessary had started to wane.

So yes, you are right Chris, I must play like a kid, eat ice cream, notice the beautiful angles of spring light that I sometimes forget to notice and focus on what is important about living instead of what is possible in dying. I'm pretty damn lucky overall; I quit drinking, smoking and doing drugs a few years back so at least I have sobriety going for me. I have a good job with great healthcare. And now I have a great place to visit and chat with folks who are truly there for me. I really appreciate your support you guys, really.

Thanks again for everything!