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Author Topic: Newly diagnosed  (Read 3605 times)

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Offline Wolfie123

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Newly diagnosed
« on: September 20, 2019, 11:58:41 am »
Its been a month since i was diagnosed.. Cd4 is 554 and vl is 7600... I am a loner really and dont have anyone to talk too... I work and literally have been keeping my m8nd busy!... Im depressed i feel like im running through the motions. But im going to snap one day and commit suicide... I feel dirty i dont feel myself anymore... I look at myself differently and im just trying get to a place i can feel better but this is hard especially after i heard my.co pay fees i literally would rather be dead than to deal with being in more debt.... If i thought love was hard BEFORE! It seems unattainable... Idk i just needed to vent...
How did you find your way back to sanity or just to where you could feel good about yourself....


Offline Ptrk3

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Re: Newly diagnosed
« Reply #1 on: September 20, 2019, 12:48:50 pm »
Firstly, I'm sorry to read of your diagnosis:  it can be a shocking traumatic event, to be sure.

I'm glad, though, that you have found these forums.  Make use of them.  They can provide you comfort, insight, and support:  here, you are never alone.

Yes, a diagnosis is tough news to bear.  It does get better, though, believe me and many forum members who have been diagnosed decades ago and who remain healthy and thriving.

If you need cognitive therapy, talk to your healthcare provider for assistance.  Depression can change your brain chemistry subtly, like a rip current, so please be mindful of the dangers of untreated depression.

You should also know that your numbers are very good, so it may be likely that your diagnosis came early, when antiretroviral treatment can best assure minimal problems.

Once you start your antiretroviral regimen--and adhere to it as prescribed--you will be fine.  You will go about your life as normal and attain all the things you want in life. 

Do not let a virus define you.  You are in control. 

Please keep involved with this forum, a safe place where you will find much support from peers who understand and have empathy:  you will be fine.

In terms of co-pay matters, there are many options that you may have available to you, depending on the type of insurance you have (these programs are not "means tested," so your income matters not).  Talk to your healthcare provider.  In the meantime, here's a link to get you started:

https://www.verywellhealth.com/list-of-hiv-drug-co-pay-and-assistance-programs-49310

Finally, please keep forum members updated on your progress.

HIV 101 - Basics
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PEP and PrEP

Offline Jim Allen

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Re: Newly diagnosed
« Reply #2 on: September 20, 2019, 12:51:53 pm »
Hiya OP,

I don't have much to add to what Ptrk3 posted but I did want to say HI, I'm sorry to hear that you're in so much pain and just know you are not alone

Best, Jim
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline virgo313

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  • Posts: 216
Re: Newly diagnosed
« Reply #3 on: September 20, 2019, 01:29:36 pm »
Hello Wolfie,

Welcome. You are not alone. Almost everyone feel down at beginning. It is very normal to feel sad. Give some time for yourself to settle down.
We all will be supportive. Do continue to share your post as much as u like. Tks
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline Tonny2

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Re: Newly diagnosed
« Reply #4 on: September 21, 2019, 08:34:22 am »


        ojo.      Hello and welcome, you are not alone anymore...we all here know how you are feeling, it's normal, give it a little time, you will digest your DX and eventually, you will learn how to live with the virus, trust me, I've been living with my most faithful partner (HIV) for the last 24 years of my life.

You feel dirty?, Mmmm, having sex is part of life, which neans YOU ARE ALIVE, if you adquiere the virus it's irrelevantlnow, what it is relevant is what to do now,

Talk to your doctor, everything you posted in here, your doctor will help you with answers, otherwise, we are here for you...you are alliwed to cry, feel dirty, etc, but at one point, you will have to decide what you want to be, a VICTOR OR A VICTIM, trust me, there is life after an HIV dx, even I dare to say, your life will be better with the right attitude...about finding love, take it easy, first start treatment, learn how to live with the virus then, you will have the  right mind set to look for love, I found it, you will too...good luck and we are here for you
PS  English is my second language and I'm legally blind so, I'm sorry for the typos (errors)
« Last Edit: September 21, 2019, 10:36:43 am by Ptrk3 »

Offline Wolfie123

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Re: Newly diagnosed
« Reply #5 on: September 21, 2019, 11:24:12 am »
Thanks! For the support and uplifting words! I dont know where to turn who to talk to or trust. I cant think of telling my mom who i love and look up to the most just the disappointment.. She will feel... I haven't even taken the time out to think or even cry really about it... I joined here to be able to vent and see others perspectives on life amd how.to move forward. So i am hopeful just very scared of whats to come...

Offline virgo313

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  • Posts: 216
Re: Newly diagnosed
« Reply #6 on: September 21, 2019, 12:20:26 pm »
Hi,
Take one step at a time. You have got result already. Your CD4 is GREAT. Much higher then some negative people. Who to trust? Right now, trust your Dr. He/she will see you to have an undectable VL. Thatís all the goal you need to archive.
About telling other people, that can be done later at a stage when u feel comfortable.
I have not told my parents till now. I see there is no need to tell them. Tks
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline Jim Allen

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Re: Newly diagnosed
« Reply #7 on: September 21, 2019, 12:49:22 pm »
Hiya

An HIV diagnosis can be a lot to digest, it's also a journey, not a race so it can take time.

Quote
others perspectives on life

Perspectives on life ... Oh boy.

What I will say is as soon as I started to realize HIV does not change who I am or control me but I control it, things got better.

Also just getting on with living my life kept me going, my perspective is perhaps different as a touch of AIDS is the least of my concerns. 

Quote
I joined here to be able to vent and

Well, we're here and you are not alone. Also, you might want to check with the local NGO's & Groups to see if there are any face to face peer support meetings etc.

Jim
« Last Edit: November 11, 2019, 01:04:21 pm by Jim Allen »
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Wolfie123

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Re: Newly diagnosed
« Reply #8 on: September 21, 2019, 02:52:25 pm »
Im supposedly suppose to start biktarvy when my insurance and adap are worked out.. But that wont be until next week... So i will definitely keep you posted my next appointment is in december! So hoping for good news!
 
Hi,
Take one step at a time. You have got result already. Your CD4 is GREAT. Much higher then some negative people. Who to trust? Right now, trust your Dr. He/she will see you to have an undectable VL. Thatís all the goal you need to archive.
About telling other people, that can be done later at a stage when u feel comfortable.
I have not told my parents till now. I see there is no need to tell them. Tks

Offline TexasDragon

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  • Posts: 97
Re: Newly diagnosed
« Reply #9 on: September 23, 2019, 09:56:32 pm »
Wolfie123 -

I was where you are now almost a year ago. Like you I am a loner by nature. I havenít told anyone other than folks I have met here.

It does get better. Life goes on. Biktarvy works.

I honestly couldnít think past the next day initially. More just being alive than really living. But here I am a year later, no medical issues to speak of, still ride my bike, still work, and am still a good person - or try to be.

You can do this. Patience and not perfection.
Exposure 10-04-2018
Dx 11-08-2018
1st Appt 11-15-2018
11-15-2018 Blood Draw - CD4 468 11% VL 316,000
2nd Appt 12-04-2018 - Hep A and B Vaccines
Start of Biktarvy 12-14-2018
3rd Appt 01-15-2019 - All Good - 2nd Hep B Vaccine
01-16-2019 Blood Draw - CD4 934 28% VL 98
4th Appt 04-16-2019 - All Good - Final Hep B Vaccine
04-16-2019 Blood Draw - CD4 873 30% VL <20

Offline Expat1

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  • Posts: 302
Re: Newly diagnosed
« Reply #10 on: September 24, 2019, 08:04:30 am »
Your CD4 is very good.  Your viral load is on the lower side (mine was 43000).

I see you already have contacted ADAP, if that does not work out there is alsoGilead copay help.  Look here:
 
https://www.gileadadvancingaccess.com/hcp/financial-assistance/copay-support

This program covers up to $7,200 in co-pays per year with no monthly limit for these prescription regimens:
BIKTARVYģ
(bictegravir/emtricitabine/tenofovir alafenamide)

Look, todays meds are good.   Take them, and live your live and die of cancer or a heart attack in your 70  or   80s like everyone else.  :-)

Hang in there, it will be OK.

Offline lightalltheway

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Re: Newly diagnosed
« Reply #11 on: September 27, 2019, 03:46:05 pm »
Wolfie123,

I hope you will read my message with both, your mind fully open and your heart fully clear.

I completely understand how much devastating you feel, I know as a matter of fact that receiving such a diagnose is something that NOBODY can ever be prepared for. Its the type of things that life before is something, and life after is completely something else.

I am here to offer you a free advice, just try to lead your life after your diagnoses. Remember we are in 2019. HIV medication are safe to take, there are plenty of cocktails that you can choose to fit your life style and needs. AIDS era is gone, HIV now is classified as a chronic disease same as diabetes and high blood pressure. Please be nice to yourself while understanding that science.

You are not dirty, you are a human being. A beautiful one with experience, its a journey that you will take charge of while ensuring that you're not alone.

Concerning sharing your status with others, including family, I would say give time some more time. So you will be able to understand and read more about it and mentally more stable to take the decision to share. Please, I am not saying that sharing is bad, but to know exactly who worth knowing this about you and who does not. You are in a phase in which you need to build your own support system.

Please let me (us) know if you need any help and/ or information. Try to read my message again and rest assured your safe and your not alone.

Prince

Offline Wolfie123

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Re: Newly diagnosed
« Reply #12 on: September 27, 2019, 04:51:15 pm »
Thank you Prince .... I just feel so disappointed in myself! I let myself down... I let depression and just feeling worthless come between me and my body my health my life... I put it all at risk for a moment. I cant grasp what my mom will feel if/when i tell her... So im just processing thinking if different scenarios preparing myself..  Everthings happening so quickly too between insurance the pills and my co pay and where im going and how am i getting and paying... It kinda boggled my brain a bit..  Im just anxious about the future...

Offline Mindless

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Re: Newly diagnosed
« Reply #13 on: September 28, 2019, 01:06:38 am »
I just feel so disappointed in myself! I let myself down... I let depression and just feeling worthless come between me and my body my health my life... I put it all at risk for a moment.

I can feel you. I feel the same. I have no answers to offer you but a big brotherly hug. Try to forgive yourself, as Iím trying to do myself.

M

Offline JosephP

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  • Keep looking FORWARD... Dx'd 8/10/2013...
Re: Newly diagnosed
« Reply #14 on: October 03, 2019, 10:19:44 pm »

How did you find your way back to sanity or just to where you could feel good about yourself....

Eventually, little by little, step by step, day by day you will be improving. Many of us had the same feeling upon diagnostic and it is perfectly normal. We grew up in a time when being diagnosed was basically a death sentence but that is no longer the case. Advances in treatment are huge and now you and I and of those of us that live with the virus have about the same life expectancy as someone HIV-. Talk to your doctor. Confide on him/her. Maybe a therapist? It does take a while to accept it. But keep going! Head up. You don't have to disclose to anyone, except those that need to know, and the fog will be lifting!
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

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Re: Newly diagnosed
« Reply #15 on: October 03, 2019, 10:25:18 pm »
Im just anxious about the future...

Your future will be as bright as it was before! You make that decision not HIV!  :)
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 leatherman

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Re: Newly diagnosed
« Reply #16 on: October 04, 2019, 11:42:46 am »
those of us that live with the virus have about the same life expectancy as someone HIV-
actually, as HIV+ people receive more healthcare on average, studies show that HIV+ people could be living longer than our uncared-for HIV- counterparts. :)

I graduated among only 43 seniors in a small high school. Even though I've lived with HIV for 35 yrs this november, I have already outlived 3 other classmates - none of whom died of AIDS/HIV.  :o As the years when I was barely surviving aids have receded into the past (thanks to the meds!) and my life expectancy planning has gone from 3 wks left to live to planning for for long haul now, I find myself planning (and worrying) that there's a possibility that I will live as long as my 102 yr grandmother who is still doing pretty darn good.  :o

as to your future? In theory, it's simple. Take your meds and work hard towards making your dreams come true. In reality, it's going to take hard work and patience but your life will be whatever you try to make it to be.
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline Wolfie123

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Re: Newly diagnosed
« Reply #17 on: October 21, 2019, 09:15:55 pm »
So I don't  know where I posted I was waiting to take my medication when I received it back in September on the 28th. I didn't take it until about October 11th. Mind you I was diagnosed in August. I swallows my fear of living life everyday having to take this pill. I take it at 3am before work. You may say why so early but I'd rather get it over with since the time I go to sleep fluctuates and I dont want to forget...  but the thing that pushed me to take them were episodes of confusion I'd be really hot in the face and head and couldn't remember what I was thinking in the moment I couldn't even process a thought fully... so I still wasn't sure about my adap and I saw I was being charged for my pills so I was definently  freaking out but it's been taken care of so I feel better and the fogginess I was feeling has subsided somewhat now I'm just observing how the pills affect me.


Offline JosephP

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Re: Newly diagnosed
« Reply #18 on: November 04, 2019, 09:40:57 pm »
actually, as HIV+ people receive more healthcare on average, studies show that HIV+ people could be living longer than our uncared-for HIV- counterparts. :)

And, on that count, you are correct! And yes, you will probably reach the tender age of 102!  :) :)
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 arber_B

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Re: Newly diagnosed
« Reply #19 on: November 22, 2019, 10:32:34 pm »
Its been a month since i was diagnosed.. Cd4 is 554 and vl is 7600... I am a loner really and dont have anyone to talk too... I work and literally have been keeping my m8nd busy!... Im depressed i feel like im running through the motions. But im going to snap one day and commit suicide... I feel dirty i dont feel myself anymore... I look at myself differently and im just trying get to a place i can feel better but this is hard especially after i heard my.co pay fees i literally would rather be dead than to deal with being in more debt.... If i thought love was hard BEFORE! It seems unattainable... Idk i just needed to vent...
How did you find your way back to sanity or just to where you could feel good about yourself....

I hear every single word you just said. It will happen to us. It will!

 


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