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Author Topic: Initial post & Diagnosis Story  (Read 2127 times)

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Offline agokwe

  • New Member
  • Posts: 2
Initial post & Diagnosis Story
« on: April 10, 2011, 11:34:39 PM »
Hi everyone,
  I would like to thank you for all of the witty banter that is posted daily. When I read the posts, they let me know that I'm not alone with what I'm going through, because someone have posted close to the exact things that I've been through whether good or bad in my life in the past five years.
  I would like to tell my diagnosis story. Wow, it seems like it was yesterday and also like a distant memory.
  Going back over five years ago,  I just left work around 7.15 am after working third shift at a local convenient store. I was riding my bike home that pre-spring morning  and as I was peddling I just felt tired like I have never felt. The more I peddled the more I could not breathe. I was just about a mile and a half from work when I could not muster the energy to go any further. So, I started walking the rest of my  three mile journey back home which seemed like it took an eternity to accomplish. I finally made it home.
  Luckily I did not have to work for a day or so. As I lay on the couch too tired to move and too weak to eat. I did not know what was wrong at the time, but I had three theories as to why I could not breathe.
  My first theory  starts a couple months earlier while working on a construction site, I was cutting plywood and sawdust entered my lungs. A few weeks later, I felt the need to find a job closer to home. So I found two jobs about four miles from home.
  My second theory  starts about a week into working as a cook in a restaurant. I had to clean the stove everyday before I left work with a cleaning solution. I cleaned the stove about four to five times a week.
  My third theory was a conversation I had with a customer.
  And as the days went on I grew weaker and lost a lot of weight to were my manager asked what was wrong with me. She could tell that I had gotten slower and thinner , but when I started she said I was her best worker. I did not know what was wrong. I thought working those two jobs were kicking my butt. That could not be the case because I'm a hard worker.
So going back to the day of riding my bike home that morning from the convenient store.  When I got to the point to were I could not breathe and peddle and started walking home. I had a sense that I was going to die on that road, because I was no where near home or any houses, and did not have a cell phone to call for help. Also there were no cars on that road, just me, with the will to get home. Walking those miles seemed like an eternity. I remember getting home, looking at the vcr and the time was around 11 am. I was so glad to be home, but I still was not out of the woods yet. I did not feel better the next day so I called a friend to take me to a clinic because I was still weak. She took me to the clinic and on the drive over I confessed to her that there might be something very wrong with me. I told her of a conversation that I had with a customer that came into my store about a week prior. He and I had the same partner many years apart. He was hearing rumors from people, that our mutual partner died of aids. He died about six months prior to that conversation. So, I told my friend that I might have it too.
  While at the clinic I was tested and the doctor wanted to also test my lung function. He asked me to take a deep breath and I became unconscious and fell to the floor, waking up in an ambulance taking me to hospital.
  While at hospital, they took blood for another HIV test and put me on saline and oxygen. After eight hours, I was released. I still could not breathe or hardly walk. My mom had to help me to the car. The release form said I had acute bronchitis and gave me a script for albuterol.
The next day, still not better, my mom urged me to go to another hospital in the next county over. I did. Still not able to walk or breathe. As we were walking the sidewalk up to the emergency room doors, a guard noticed that I could not walk. He thought  I had injured my foot or leg, because we would walk a few steps and stop. He thought it was strange he told us and ran to get a wheelchair. He wheeled me into the Emergency room were they saw me immediately, took my temperature which was 104 and put me on oxygen.  The doctors did a battery of tests and contacted the clinic were I had  left from the previous day. They put me in quarantine because  they did not know if I had tuberculosis as of yet. I was in quarantine for two days. They ruled out tuberculosis. They performed a lung lavage for Pulmonary Alveolar Proteinasis (PAP)  flushed my lung with liquid to clean it out, so I could breathe. I felt better afterward, but still had to stay there for four more days. It was the third day I was there, one of the doctors came to my room and asked did I remember the test I took at the clinic. I answered yes. He said, "It came back positive." I said, "thank you". He said, "it would be best to tell your family" and left. I wasn't in shock. But I knew my life had changed. Just relieved to know the answer. Now a lot of things fell into place, as to why my body had changed over the past couple of years.
  But from then to now I have had my ups and downs. I've been through the gambit of emotions, but one thing I know is that it gets better.  It takes time, but it does get better.

Offline tednlou2

  • Member
  • Posts: 5,731
Re: Initial post & Diagnosis Story
« Reply #1 on: April 11, 2011, 12:25:11 AM »
Thanks for sharing your story.  I'm surprised they didn't admit you to the hospital with your trouble breathing and walking.  Glad you got medical attention and are here to tell your story.  I look forward to hearing more from you in the future.

Offline mikeyb39

  • Member
  • Posts: 980
Re: Initial post & Diagnosis Story
« Reply #2 on: April 11, 2011, 12:38:59 AM »
yes, thank u for sharing, i would like to know more as well.  How long ago did this happen?  Are you newly diagnosed?
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

Offline littleprince

  • Member
  • Posts: 201
Re: Initial post & Diagnosis Story
« Reply #3 on: April 11, 2011, 03:55:50 AM »
Welcome. I went through similar last year. I remember walking from a shop to my car and having to stop a few times to breathe. When I couldn’t walk from my bed to the lounge I knew I was in trouble.

Let us know how the following 5 years went. I hope you are in a much better place today.

Offline agokwe

  • New Member
  • Posts: 2
Re: Initial post & Diagnosis Story
« Reply #4 on: April 11, 2011, 04:59:13 PM »
Thank you all for your responses.  Glad to know you care. I really don't know why they wouldn't admit me into the hospital.  That question still eludes me til today but I have some theories. I have been Positively Living for five years now, my fifth anniversary was in March of this year. It has been a journey, but the lessons you learn on this road about people and their misconceptions about what you are going through can be an eye opener. No one can fully understand what it is like until it happens to them. But through it all I know what I am going through and have went through has made me a better person. No matter what life throws at me I will use it to better my life and help people understand what we go through on a daily basis. And again thank you. xoxo

Offline Rev. Moon

  • Member
  • Posts: 3,787
  • Smart ass faggot ©
Re: Initial post & Diagnosis Story
« Reply #5 on: April 11, 2011, 06:29:10 PM »
Hi there,

Glad to read that you are doing better nowadays.  Welcome to our forums :)
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline skeebo1969

  • Member
  • Posts: 5,860
Re: Initial post & Diagnosis Story
« Reply #6 on: April 12, 2011, 07:40:22 AM »

   That's some story, thanks for sharing.  When I initially got sick I had a similar episode in a grocery store.  I didn't think I would ever make it home-- still remember the relief I felt when I finally walked in my door sweating profusely one July afternoon.   Like you said, with time it gets better.   

   Welcome to the forums.

I despise the song Love is in the Air, you should too.

Offline hope_for_a_cure

  • Member
  • Posts: 1,513
Re: Initial post & Diagnosis Story
« Reply #7 on: April 12, 2011, 07:55:51 AM »
No one can fully understand what it is like until it happens to them.

That is very true with any experience in life.  The sequence of events that you describe bring back many of the memories I have of being sick.  For me it was trying to climb the stairs in my home, having to stop to catch my breath after just 4 or 5 steps.  

Great to read that you are much better now.  There are so many of us who got sick and are now doing much better now.  Advancements in treatment allow us newbies to go on medications that are not only known to be effective, but also dont cause the horrible side effects that people experienced years ago.

Welcome to the site!  

Offline metekrop

  • Member
  • Posts: 410
  • Is time running fast for you.
Re: Initial post & Diagnosis Story
« Reply #8 on: April 12, 2011, 08:07:11 AM »
Thanks for sharing your story.  I think everybody has got the same kind of story.  The good thing is that there are always better days then after.
Diag.on 12/8, 2000, CD 440 VL 44K, No Meds
12/08 - 2/09 CD< 50 & VL >500k hosp'z.
St. Atripla - 7/09 CD 179, VL 197k
10/09 CD 300 VL U
3/10 CD 468 U
8/10 CD 460 U
12/10 CD 492 U
3/11 CD 636 U
8/11 CD 530 U
1/12 cd 616 U
7/12 CD 640 U
12/12 CD 669 U
5/13 CD711 U
11/13 663 U
4/14 CD 797 U
10/14 CD 810 U
4/15 CD 671 U
10/15 CD 694 U
3/16 CD 768 U
8/16 CD 459 U
2/22 CD 780 U
8/31 CD 940 U


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