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Author Topic: Four years into this journey!  (Read 1641 times)

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Offline JosephP

  • Member
  • Posts: 318
  • Keep looking FORWARD... Dx'd 8/10/2013...
Four years into this journey!
« on: July 21, 2017, 11:08:19 pm »
Four years ago, my application for life insurance got denied. It was July 21, 2013! A few days later a note from the insurance company was mailed and it urged me to contact my doctor. No reason, no emergency. I had felt a bit run down, but attributed to work, the heat, preparing for camp, planning a trip and the agony and suffering of my dog. Went to the doctor, sent me for some tests and nothing showed up. I wasn't feeling bad just tired. Then I began to sweat at night profusely. And my weight began to drop like a bomb... Nothing seem to stop it... Now it is August and I am dropping weight... Feeling very tired but nothing else. Everyone in my office is concerned about my weight drop.. I look in the mirror and my cheeks are very prominent now, my legs are skinny as rails and my fingers were no more than bones with skin wrapped around (mind you, I have always had very skinny hands and fingers). Going to see doctor... He is alarmed.. More tests but never occurred to have an HIV test. Doctor sent me to a hematology oncology practice. He suspected leukemia.. I was petrified.. petrified.. Mortified. I made appointment and they wanted to see me asap, like next day. I did go.. More tests. The question came as 'How is your sex life?' I answered ok, but it could use an improvement! Then,  I flew to Miami to a conference and was there the entire week. Not feeling bad, but every night I will wake up soaked. Then I got a call from the County's Health Department followed by a letter from the Commonwealth Health Department, asking me to make an appointment with them. Upon my return from Miami I did. The oncologist called.. wanted to run another battery of tests and, and, and an HIV test, was I up to it? It is August 10th now. The case worker, a very nice and sweet woman saw me, we chit chat a minute or two then she dropped the 'news'... You are HIV+.. Oh brother.. I felt that like I was falling from the 150th floor of a building thru the elevator shaft... I felt that I was yelling and screaming, but the lady just put her hand on my arm and said... 'Are you ok'? I was paralyzed in fear... I never yelled I just thought I did.... I recover... Now what? What am I going to do? All emotions run thru me. Fear grabbed me... She asked if I had an ID Doctor.. Told me to look for one (gave the card of a doctor...) and told me to come  back in four days... I drove without knowing I was driving... Stopped for lunch.. I couldn't stop thinking... I am HIV+... I am HIV+ Made an appointment with doctor she recommended. Called the oncologist.. Don't worry about the hiv test.. I am hiv+!!. Went back to the County office... She just wanted to be sure I was ok. She gave me a script to have blood drawn.. When back to my doctor and you could see the look in his face... He is worried about my health. At that point he didn't know about my dx. One of the most difficult things I have had to do ever was to tell him. He turned white... But four years later I am here... And I am here to stay! The ID doctor the County recommended turned out to be one of the top HIV specialists in the area... And I love her... for those of you just diagnosed, the road is rocky... the road is difficult but the road is not unendurable! ... You will be ok.. Take your meds as prescribed... Keep your appointments... I don't know when will I be called 'Long Term Survivor' but nothing I love more than be a 'LTS'... Genvoya is  the pill that keeps me going! Thank to the scientists at Gilead Labs.. Big hug to my id doctor.. And thanks to everyone that has held me high (like my GP) even when I was feeling in the dumps!!
Today January 20, 2020, I have taken 2378 pills of my ARV since first pill. This means 79 bottles of 30 pills of ARVs at an average of $3950 per bottle or $313,103 USD for my treatment. I have a compliance of 99.83% taking my meds and only .17% (or 4 pills) non-compliant. Of these four pills two I forgot completely, One I lost and one I didn't have with me while traveling! I became UD 3 months after treatment start   ***We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds! ***

Offline JosephP

  • Member
  • Posts: 318
  • Keep looking FORWARD... Dx'd 8/10/2013...
Re: Four years into this journey!
« Reply #1 on: July 21, 2017, 11:09:11 pm »
 :) :) Sorry about the rambling... But is four years after all! ;) ;)
Today January 20, 2020, I have taken 2378 pills of my ARV since first pill. This means 79 bottles of 30 pills of ARVs at an average of $3950 per bottle or $313,103 USD for my treatment. I have a compliance of 99.83% taking my meds and only .17% (or 4 pills) non-compliant. Of these four pills two I forgot completely, One I lost and one I didn't have with me while traveling! I became UD 3 months after treatment start   ***We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds! ***

Offline DK57

  • Member
  • Posts: 17
Re: Four years into this journey!
« Reply #2 on: July 22, 2017, 07:03:08 pm »
 Great post👍 I'm about 7 months in and post like these are encouraging, as well helping me realize how much better I have gotten in such a short time. Adherence peps!!

Offline PittGurl

  • Member
  • Posts: 351
Re: Four years into this journey!
« Reply #3 on: July 22, 2017, 11:47:31 pm »
Yes thank you for posting! You are 2 years ahead of me...some days are harder than  others... :)
Infected ~5/16/15-7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Pos Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq….
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 mo on Triumeq
4-27-16    CD4=580; VL=UD; 32%
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/18   CD4=893; VL=UD; 39%
8/9/18   CD4=858; VL=UD; 41%
12/27/18   CD4=841; VL=UD; 41%
4/24/19   CD4=751; VL=UD; 39%
8/27/19   CD4=719; VL=UD; 36%
10/31/19   CD4=746; VL=UD; 37%

 


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