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LeftofObama

(4,243 posts)
Mon Dec 26, 2011, 08:15 PM Dec 2011

I'm finally getting back to "normal"!

I just felt like I needed to share this with someone and I figure those who are in a similar situation will understand and maybe even be encouraged.

In November, 2010 I was diagnosed with AIDS. I was rapidly losing weight and had PCP pnuemonia. Although my Drs. never said it, I honestly thought I wouldn't live to see 2011.

Before my diagnosis I was an avid runner and working out was my escape from the stresses of everyday life. After I was diagnosed I decided to take about a year off and let my body recouperate. I gained about 30 lbs. and although I had some flab around my mid section, I was thankful to be able to gain the weight back. About 2 months ago I rejoined the gym and started walking and doing a little bit of weight training with VERY light weights. Well, today I walked/ran (interval training) for an hour, lifted weights for a half hour, and went back to the track and ran for a half hour. I feel GREAT!

Funny how things can go from absolutely horrible to almost back to normal in just over a year.

To all of those people out there who sometimes feel like giving up, it really DOES get better! Sometimes you have to work your butt off to make it happen, but it WILL happen!

I go to an HIV/AIDS support group once a month and we all try to give each other emotional support and the lady who leads the group loves to hear of our successes. This will be my success story for this coming Friday!





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I'm finally getting back to "normal"! (Original Post) LeftofObama Dec 2011 OP
Thats great to hear! William769 Dec 2011 #1
Sounds familiar BigDemVoter Jun 2012 #2
I had never even heard of Castleman's disease before. LeftofObama Jun 2012 #4
.. La Lioness Priyanka Jun 2012 #3
Thank you! LeftofObama Jun 2012 #5
I'm curious..... Hassin Bin Sober Jun 2012 #6
That was my first diagnosis. LeftofObama Jun 2012 #7
Wow. How long do you think you were positive before diagnosis? Hassin Bin Sober Jun 2012 #8
I'm not sure how long I was positive before the diagnosis. LeftofObama Jun 2012 #9
By the way. Thanks for sharing with me. My fear was/is I might be too nosy. Hassin Bin Sober Jun 2012 #10

William769

(55,871 posts)
1. Thats great to hear!
Mon Dec 26, 2011, 09:19 PM
Dec 2011

Back in 2005 I had PCP pnuemonia was in the hospital my CD4 four was 3, the Doctors said they were going to be honest with me and tell me I would not leave the hospital alive (I also went from 200 pounds to 96 pounds) . I said bullshit it's not time for me to go, my life partner (16 years) is home sick and I need to get better to take care of him. 45 days later I left the hospital still sick (but not life threatening anymore).

I lost my life partner a year later and due to friends and also a HIV/AIDS support group that I attend, I was able to cope.

We are now approaching 2012, I am still here and kicking my weight is normal, my Cd4 count fluxuates between 400 & 500 and my viral load is undetecable.

I firmly believe a strong will power is a major factor in fighting HIV/AIDS plus being compliant with your meds.

I am really glad to hear you are doing well & wish you all the best and am glad you found our group here.

BigDemVoter

(4,553 posts)
2. Sounds familiar
Sun Jun 3, 2012, 10:01 AM
Jun 2012

I, too, was diagnosed in November 2010 because of PCP with a CD4 count of 48. As of today, my CD4 count is 350, but I have, unfortunately, been diagnosed with very, very rare HIV-related multicentric Castleman's Disease which has been the single biggest problem I've had to date. I DID have run-of-the-mill bacterial pneumonia in May of this year, but I was so happy to discover it was NOT PCP (how strange to be happy about something like this!).

I'm now in the middle of a job change & am squeaking by on COBRA benefits until my new insurance kicks in. My friends from overseas who have single payer, government-sponsored health insurance, are all horrified at our pitiful system.

It's so strange, because I feel fine right now--not tired, don't feel sick & am ready to get back to work. I'm keeping my fingers crossed that it continues--I wish YOU the best as well!

LeftofObama

(4,243 posts)
4. I had never even heard of Castleman's disease before.
Sun Jun 3, 2012, 06:21 PM
Jun 2012

I had to do a search for it, but it appears there are treatments available. Glad to hear you are feeling fine, just remember to keep a positive attitude and if you ever need me to lean on, I'm here.

Hassin Bin Sober

(26,775 posts)
6. I'm curious.....
Fri Jun 8, 2012, 12:59 PM
Jun 2012

Was that your first diagnosis or did you have HIV that was classified as AIDS (due to Tcell count etc.).

I have a lot of friends with HIV. One, I think, eventually met the definition of AIDS but is doing much better now that he is back on meds.

LeftofObama

(4,243 posts)
7. That was my first diagnosis.
Fri Jun 8, 2012, 02:36 PM
Jun 2012

I wasn't on meds until I was diagnosed in November, 2010. I was admitted to the hospital with PCP pneumonia and after an HIV test my T Cell count was 27. Up until that time I had never really been seriously sick.

Hassin Bin Sober

(26,775 posts)
8. Wow. How long do you think you were positive before diagnosis?
Fri Jun 8, 2012, 03:06 PM
Jun 2012

It's been several years since I've been tested (I'm in a long term monogamous relationship) but I've been operating under the impression that I would "know" if I were sick.

My first up-close and personal experience with the disease was when I had a boyfriend test positive while we were together. I always thought I/WE should have put two and two together as he was really sick with a fever weeks before we met - it was probably him sero-converting. That was back in '95 right at the dawn of the protease inhibitor revolution. It was a scary time but a hopeful time.

I'm overdue for a general check-up and I suppose a test will be done as a matter of course. I was more worried about syphilis when a friend wound up with stage 2 syphilis a couple years ago and had to go under heavy penicillin treatment. I ran right to the doctor when I read the statistics on that in the gay community.

I'm glad you are doing and feeling better. I really believe/hope we will see the end soon.

LeftofObama

(4,243 posts)
9. I'm not sure how long I was positive before the diagnosis.
Fri Jun 8, 2012, 03:55 PM
Jun 2012

I was like you in that I figured I would know if I were sick. Well, it really doesn't work that way because until the doctors told me what my illness was, AIDS was the absolute last thing I thought it would be.

I just happened to get weaker and weaker until one day it was all I could do to get out of bed. A friend came over to check on me and I looked him in the eye and said "I know I'm dying, I can feel it". He is the one who took me to the hospital and the rest is history.

Sorry to be so melodramatic, but it's a feeling I wouldn't wish on the most hard core right winger! It's just horrible!

Hassin Bin Sober

(26,775 posts)
10. By the way. Thanks for sharing with me. My fear was/is I might be too nosy.
Mon Jun 11, 2012, 02:55 PM
Jun 2012

I've been meaning to ask how my ex's Tcells are doing. Last I checked he was doing great.

I'm curious how the new drug regimens are sitting these days. When my ex started on the meds in 1995 it was pretty rough. He was having bad reactions to the hands full of meds and was miserable. I think that's why he went off the meds for some time and got dangerously immune compromised.

Last time he visited I saw him pop a couple pills without batting an eyelash.

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