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Author Topic: Can't believe I'm still here.. It's been a while since my last post  (Read 3106 times)

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Offline Dale Parker

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  • Posts: 268
It's been about ten years since I posted anything on here. I always think of Good Friday as the first day that I started my anitviral medicines. It was actually April 10th 2009 but since Easter always changes I find it easier to remember Good Friday as my start date.
Just a quick bit of personal background to save you from going back fifteen years of posts.
I was diagnosed in late March of 2009 with AIDS after a year of having health problems. I was 51 years old and had been laid off work 6 months prior and was just about out of money.  I had all of symptoms of HIV but 7 doctors missed it. Since I didn't know any one with HIV I never put 2+2 together to figure it out. I finally figured it out myself by reading a newspaper article on a baseball player who's girlfriend was sueing him for giving her HIV and it listed all the symptoms. I had them all except for the night sweats which started soon after. My CD4 count was 21 (no I didn't forget a number). Luckly I was pretty healthy considering the absence of any large numbers CD4's. 
Back to present day I still doing pretty good, but have had a few health issues.  Currently my CD4's are 186 which is about average for me. I think my highest count was around 208.  In 2016 I was diagnosed with COPD which currently is really my only major health problem. It's under control with puffers and not bad enough to require oxygen. In 2018 I had problems with my voice being horse sounding which was due to hyper vocal cord dysplasia. For three years I was having day surgery (microlaryngoscopy) every six months to get rid of the bumps on my vocal cords.  The surgery was quick and painless. I was in and out of surgery in less than 4 hours.  The worst part was that I couldn't talk at all four days. I had to gradually increase my talking over the next threee weeks. Since I'm a talker that was pretty ruff. After my 6th surgery the surgeon reccomended that I go for radiation. The biopsys showed a "perpensity to turn into cancer". I had 21 days of fairly light radiation on my throat in February of 2021.  Luckily the cancer hospital is only a block away.  From the time I left home until my return home, most days, it was only 45 minutes.
      I have been really lucky with all of my medical and hospital appointments as I have never had much of a wait time. The only Covid hickup was that I was supposed to have my 5th operation in May 2020. The surgeon called me to go in March the 13th as she knew that the hospitals were going to close. I ended up getting bumped until August as they closed the operating rooms on March 12th. 
    Two days after my 5th operation my sisters lung cancer (which she fought for 11 years) spread to her adrenal gland and leg bone.  Within a week the cancer progressed to her brain. She ended up having 3 tumors removed and was given 6 months at most.  If that wasn't bad enough two days before she was supposed to get released from hospital my brother, who was two years younger than me, passed away from a major heat attack a month befor his 60th birthday.  My sister did passaway in April 2021, 6 weeks after her 65th birthday.
  This is geting pretty long and it's late so I'll sign off for now.
Hoping everyone is doing as well as they can and wishing you all good Easter. Take care.
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline numbersguy82

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Re: Can't believe I'm still here.. It's been a while since my last post
« Reply #1 on: March 29, 2024, 06:00:26 am »
Will firstly, welcome back! What a post full of ups and downs. Iím so grateful that youíre still here and able to inspire others who may worry about their long term quality of life.

I know for certain that you will provide relief to those who only look at their cd4s as a gauge on their health or outlook on life. Sometimes cd4s just donít rise to the levels most ranges consider normal.

Your family has seen so much tragedy and Iím sorry for all of your loss. How are you doing today? What fills your time and inspires you today? If you ever want to participate, we have a biweekly peer support meetup every other Friday. Our next one is this evening at 7pm EST.

Wishing you all the best and continued health.

Alan
Peer Support is returning, every THIRD Thursday beginning in July. New Time, New Day, New Format!

Offline Tonny2

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  • Posts: 3,045
Re: Can't believe I'm still here.. It's been a while since my last post
« Reply #2 on: March 29, 2024, 01:52:31 pm »



             ojo.         Hello there!Ö Iím glad that youíre still here, I also had 20 Cd4 when diagnosed, 29 years ago, and yes, is good to still be here. Question, how does it make you feel knowing the passing off your loved ones when we were expecting to die when diagnosed?.Ö Hugs

Offline Dale Parker

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  • Posts: 268
Re: Can't believe I'm still here.. It's been a while since my last post
« Reply #3 on: April 11, 2024, 11:34:14 pm »
Hi Tonny2:  Sorry I didn't get back to you sooner. Although at the time I ask "Why am I still here? I ultimatley believe that everyone has a timeline that is predetermined when they are going to pass away. That timeline is unmoveable by our human selves even though some people look like they have managed to speed up their passing. They were ment to die at that time.
   What makes me question things more is the speed that I into treatments.  I usually feel fine and my health issues seem pretty minor compared to others yet I always seem to get to the front of the treatment line. When my voice went horse sounding I saw my G.P. in late November and was in to see the ENT Surgon on January 2nd. I got diagnosed with the vocal cord dysplasia and I was operated on February 4th.
The other 5 operations (except for the one when they closed the hospitals due to COVID) were scheduled with in weeks of the surgeon recconendation.  Even when she decided that I should see the Oncologist I was in to see him 4 weeks later and started radiation about 10 days later. While dealing with my sisters health problems and brothers death I managed to herniat my L4/L5 disk resulting in having drop foot with my left foot. Same thing, I saw my G.P. in November got a Nerologist late December. I joke that most people got underwear and ties for Christmas but I got a Nerologist and an Oncologist. It seems no mater what I need I'm in to see medical professionals quickly.  That really makes me go "HUUMMM"
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline Tonny2

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  • Posts: 3,045
Re: Can't believe I'm still here.. It's been a while since my last post
« Reply #4 on: April 13, 2024, 01:20:49 am »



                  ojo.          Hello there!Ö Drop foot, I also have drop foot and started with the left one and now the right one is still the same although they left is worse. I have never seen a neurologist because I think that there is nothing they can do about it, do you see the neurologist already?. What did he tell you?. It was funny when I started it to have problems due to neuropathy, I started with my big toe, I was walking without shoes or socks, and I was tripping, and I would look around to see what I treat with and there was nothing around until I realized that I was tripping with my own drop toe. sometime later, the foot did the same. It is what it is.Ö I hope youíre doing OK after all those surgeries and please keep us postedÖ Hugs.


PS. Sorry for the typos, I am dictating.

 


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