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Author Topic: Newly Diagnosed  (Read 3225 times)

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Offline Palliate

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  • Posts: 8
Newly Diagnosed
« on: November 18, 2012, 12:26:26 PM »
On Friday, November 9, I got back the POZ results of my last test. In the week since, I got VL and CD4 numbers of 171,000 and 549 respectively. It is likely my doctor will want me to go on treatment ASAP.

It's been like walking around in a dream for the last week. As if I can't believe it's happened to me. I haven't gotten plugged into any local support groups or such, and I've had virtually no one to talk about it with.

One issue I will likely face is, I have a high ($2000) deductible, after which my insurance pays 100%. Problem is I don't have the $2000 at the moment. I've talked briefly with a local ASO and was told that because of my income I probably wouldn't qualify for deductible/copayment assistance. :( I still have to get with them in person and get that verified. The idea that I might have to delay treatment until I can gather the deductible has me not mildly stressed and worried.

Besides all of that, I'm all kinds of curious about what to expect from this disease. I've known many POZ people over the years, so I'm not totally unfamiliar. But having to go through it myself raises all kinds of questions.

Also I have little family, and virtually no friends, to whom I can turn for support and assistance of any kind. Part of that is simply a reluctance or fear of "coming out" about being POZ. My very conservative family were hard-pressed to accept my coming out as gay. All of the websites and literature I have read tell me that I am not alone. So far, I feel very alone. LOL Hopefully, in the next week or so, I will find some local support groups to join.

At this time, mine is very much a "One Day at a Time" existence. I cannot yet see how the challenges will resolve themselves, nor can I see a long term future. I hope it gets better soon.
Infected Spring 2012
Seroconverted probably in June 2012
POZ test 10/22/12
CD4 549 VL 171,000+ as of 11/09/12
Started Atripla 11/28/12

Offline emeraldize

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  • Posts: 3,343
Re: Newly Diagnosed
« Reply #1 on: November 18, 2012, 01:31:20 PM »
Hello and Welcome Palliate,

Walking around in a dream-like state is perfectly normal after a diagnosis. I think it's the brain's way of putting a splint on your mind. It's a good thing.

You've come to a good place in terms of finding information, similar stories, wildly different stories and plain old understanding.

This site is my resource for all of that, but perhaps more important, it's the one place that reminds me I still have a sense of humor, there are still ridiculously funny things in the world and there are still those moments when offering help works out and it's not always a matter of no good deed goes unpunished.

I wish I had some advice regarding a clever way to satisfy your deduction -- but if there's a way -- I assure you someone will come along and tell you what they did. It sounds as if there might, (emphasis on might) be a shot that a family member could help you out. I know that can be like walking through a minefield, but if you could figure how to do it without disclosure (which reads as likely difficult given their views) then $2000 is less than $10/day to pay back.

Do you have a chance to work part-time? Babysitters make scary big money these days -- I've even considered doing some just to add to the kitty. Maybe there's something else you could do such as house sitting or pet sitting.

Okay, so enough of that. The money thing will work itself out -- regarding looking for support locally - shop as carefully as you would for a car and try to determine which one (start with one) would be best for you.

Again, welcome.
Em

Offline Souledout

  • Member
  • Posts: 145
Re: Newly Diagnosed
« Reply #2 on: November 18, 2012, 01:52:29 PM »
Hi there, I'm fairly new here too. Diagnosed 18th September. With regard to walking round in a daze, it took a few weeks to get through it and get my mind back on task and not every waking moment being HIV HIV HIV!

I'm sure when you get a support network in place things will seem a little more rosey, it's going to be all right - even if it looks terrifying at the moment.

I wish I could offer some advice about the cash, I just thank god I like in the UK, the NHS is awesome.

Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline mecch

  • Member
  • Posts: 11,500
  • red pill? or blue pill?
Re: Newly Diagnosed
« Reply #3 on: November 18, 2012, 03:16:45 PM »
I am sorry you have to deal with so much at one time.

Here's some input on the med cost issue.

Even if your doc wants you on HAART right away, doesn't mean its a disaster if you don't start until you get the cash.  So if you start now or Jan isn't a life changing issue.

I assume that 2000 is the deductible on yearly drug/medicine expenses?  Or is it all medical expenses.  If its all medical expenses, then your tests and doctor bills are going to quickly use of that deductible right now. 

If its 2000 deductible on drugs, and you start now, November, then you will have the entire issue again in two months, in January. Correct?  Not good.

I would say you need to brainstorm how to get the cash for January. And going forward from then on. 

Also, the drug makers offer copay assistance in the USA. So you will want to figure out how those programs might fit in. 

Also make sure you tell your doctor that you can probably figure out the costs for January, but not for next week...  Not that its his responsibility, but sometimes doctors do have ideas about the cost side of things.

An HIV or social service org should be a good resource.

Some input on the loneliness.
Well, if you really really can't disclose to anyone in your real life, please do make sure you check in here rather frequently. 

But try to think of someone who you could add to your support network.  And if there is no one personally connected to you, then try to get a social worker or support group.  Its really important, in my opinion, to have both - the virtual support here, and the flesh and blood support.  Please try...  And what happened to the many HIV+ people you have known over the years.  Isn't it possible to give one of them a call, at least for a chat, coffee and some feeling that you are not alone?

 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Palliate

  • Member
  • Posts: 8
Re: Newly Diagnosed
« Reply #4 on: November 18, 2012, 03:40:11 PM »
Thanks to all who have replied.

The $2000 is the deductible for all med expenses. An additional factor is that I have a Health Savingas Account that allows me to save money tax-free for medical expenses. Unfortunately, until this month's open enrollment for next year, I was only saving half of what was allowed. My expenses this year have not reached $2000 and have basically depleted the savings account. And there are the visits and blood work involved in diagnosis, that still have to be paid as 2012 expenses. I upped the amount to save in the coming year, but it won't reach $2000 for a few mo'nths. One ASO suggested that I *might* not qualify for their assistance. But that has not been confirmed, and I haven't gotten to check into the other programs yet.

I am a depression/anxiety patient. I am doing relatively well at handling the news. It has, however, raised my anxiety just slightly, but I'm hanging on and not freaking out -- yet.  LOL
Infected Spring 2012
Seroconverted probably in June 2012
POZ test 10/22/12
CD4 549 VL 171,000+ as of 11/09/12
Started Atripla 11/28/12

Offline Palliate

  • Member
  • Posts: 8
Re: Newly Diagnosed
« Reply #5 on: November 18, 2012, 03:45:31 PM »
Oh yeah... my hiv+ contacts through the years. Well, you know, people come and people go. I have mostly just lost touch with them. There are a few I know whom I can contact, and that will certainly be part of my plan. I haven't started thinking clearly about it all yet.  LOL
Infected Spring 2012
Seroconverted probably in June 2012
POZ test 10/22/12
CD4 549 VL 171,000+ as of 11/09/12
Started Atripla 11/28/12

Offline mecch

  • Member
  • Posts: 11,500
  • red pill? or blue pill?
Re: Newly Diagnosed
« Reply #6 on: November 18, 2012, 04:32:56 PM »
Well then it sounds like your HAART could be covered this year, since your recent tests will surely eat up the rest of that deductible. But then, you don't want to be in a pinch about how to afford the bills in the winter months to come...
Hmm. I'm guessing you will need some local and expert advice - I hope you can find someone soon via social worker, etc.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline emeraldize

  • Member
  • Posts: 3,343
Re: Newly Diagnosed
« Reply #7 on: November 18, 2012, 07:01:08 PM »
Hi Palliate,
Please check your PM inbox.
Em

Offline tednlou2

  • Member
  • Posts: 4,840
Re: Newly Diagnosed
« Reply #8 on: November 19, 2012, 01:37:33 AM »
Palliate,

Welcome to the forums.  This site is a great alternative when you don't have "real life" friends to talk with about this.  It is great, even if you do.  You will learn more here than just about anywhere.  There is a forum here that deals with assistance programs. 

Wishing you all the best, as you come to terms with having the virus and navigating insurance issues.  I look forward to hearing more from you. 

Offline AliveNKicking

  • member
  • Posts: 1
Re: Newly Diagnosed
« Reply #9 on: November 19, 2012, 07:26:17 PM »
Hey Palliate & welcome:

I am in a somewhat similar situation with regards to not having that many friends & family around to talk too about this. My POZ diagnoses was 1 year ago on 11/22/11, I was devastated. Walked out of the clinic on that Tuesday 2 days before Thanksgiving, it was cold foggy & rainy out. I put up my umbrella and just wondered the parking lot with tears streaming down my face. This was at 9:20 AM and I knew I had to man up and to go to work, just started a new job in Sept.

I am pretty much a loner and not into all the drama, never go to the gay bars and hell do not even have that many encounters with guys but, hey it happens. Not promiscuous and always play safe but some how it happend. My parents are 600 miles away and have never even told them that I am gay. some friends know but I usually keep to myself.

Fortunate I guess that I do not make as much $$$ as you so I qualified for State help. Did not have insurance when I started the new job so was eligible for aid & MADAP. The clinic I went to is sponsored by the state and they had programs that my case worker got me into. My health insurance was covered 100%, which is now $1925.00 per month as is my HIV drug Complera, retail price is $2538.99. I am truly blessed for this. Not sure if this pricing is the same across the country and would like to get some feed back on that, anyone. I live in a suburb of Washington DC, about 32 miles from the Capital.

I started Complera on 2/7/12, a little less than 3 months after diagnosis. No terrible effects other than the fact that I was tired and fatigued all the time, especially in the afternoons & early evenings. I witnessed no side effects from the meds other than a little gas, hey it is what it is. I did lose some weight before and shortly after diagnosis. I am 5'10 and was about 155 #, pretty main stream but, during the time of testing I went down to 128 #, that was hard to take, clothes did not fit, no appetite. The Dr's did great to treat the body but they did not help the mental anguish and feelings of fear, anger, depression, etc.

After a year I am feeling better at least physically, back up to 142# and eat normal meals. Jog 2 miles every morning, which I enjoy the peace and quiet. Still have not told my parents as they are from a small town in upstate NY. I do not think they would understand. A few close 3, friends know and that is about it. No one at work knows either but I am sure they suspect something due to all the Dr visits & time off. Yes, in the beginning the paranoia does get to you. Basic things like going to the food store or even the dept. store was terrible. Just seemed like I had a sign on my back that said HIV POZ but, that is getting better.

To be honest, I am happy that I am alive but feel indifferent about life. My few friends do help but having to be silent at work and evasive with my family just makes me want to scream some days. I get thru and hope the next year of this journey will be better.

I do wish you well, please feel free to contact me if you have any questions, it would be a pleasure to provide any enlightenment that I can.

Happy Thanksgiving everyone, as we all have thanks to give in our own way

Offline Palliate

  • Member
  • Posts: 8
Re: Newly Diagnosed
« Reply #10 on: November 20, 2012, 09:06:07 AM »
Hi all. I've been away from the pc for a day or so, and I'm working nights right now, so I just wanted to speak up and acknowledge the last few posts since my last comments.

Emeraldize, yes, I got your PM. Thank you.

tednlou2, thanks for the encouragement. I am looking forward to the friends that I will  become close to here.

AliveNKicking, thank you for sharing your story. I could totally relate to all that you shared.

My doctor has been assuring me that it's all going to be ok and that we will work out the financial aspects of it. I really like him and am glad that a friend recommended him to me in May of 2011. I trust him, so that is helping some. There are so many things about the future that I can only wonder about. My anxiety has been a bit higher in the 11 days since I found out. But I am trying my best to take it "One Day at a Time."

I have made a couple of calls to one of the local HIV/AIDS support organizations but have not gotten that connection established yet. Hopefully I can do that soon.

I'll be back later today or tomorrow, but right now it's time to get some sleep... I have to work again tonight, then off 2 days, then work days Fri-Sun this weekend. I hope you are all doing well, and that you have a wonderful Thanksgiving Holiday week/weekend.
Infected Spring 2012
Seroconverted probably in June 2012
POZ test 10/22/12
CD4 549 VL 171,000+ as of 11/09/12
Started Atripla 11/28/12

Offline Palliate

  • Member
  • Posts: 8
Re: Newly Diagnosed
« Reply #11 on: November 28, 2012, 09:36:32 PM »
Hi all. I have an update.

I met with my doctor today to go over my tests and come up with a plan.

According to the best estimates I can make, I was most likely infected in April or May of this year and experienced seroconversion in June, as that was the month when I was sick all month. We discussed that fabulous graph that leatherman shared (maybe in lincoln's thread), and we came up with two options:  1) Wait til February and test again, or 2) start HAART now. We decided that since I am 5 months or so past seroconversion, my VL has probably come down as far as it will. Also, because I only needed a few hundred $$ to meet this year's deductible, and I had the option of getting 3 months' worth at once, that I could start today and get almost to March 1 before having to come up with the 2013 deductible. Yay!!

So... I just took my first Atripla about 30 minutes ago.

I really like this ID specialist and feel like I can trust him. So yay for that, and yay for being on my way to better numbers and hopefully years of good living.

So that's how the saga has unfolded to this point. Thanks to you guys for talking me through my anxieties the last week or so.
Infected Spring 2012
Seroconverted probably in June 2012
POZ test 10/22/12
CD4 549 VL 171,000+ as of 11/09/12
Started Atripla 11/28/12

Offline tednlou2

  • Member
  • Posts: 4,840
Re: Newly Diagnosed
« Reply #12 on: November 29, 2012, 12:00:55 AM »
All the best with the Atripla.  Did you just take it, like you were taking a vitamin?  Or, did it take some time to get yourself to take it?  I mean, did you have any hesitation?  I'm always curious how people deal with starting meds.

Keep us posted on how Atripla is working for you.  Again, all the best on no side-effects and being undetectable soon.

Offline Palliate

  • Member
  • Posts: 8
Re: Newly Diagnosed
« Reply #13 on: November 29, 2012, 12:16:56 AM »
All the best with the Atripla.  Did you just take it, like you were taking a vitamin?  Or, did it take some time to get yourself to take it?  I mean, did you have any hesitation?  I'm always curious how people deal with starting meds.

Keep us posted on how Atripla is working for you.  Again, all the best on no side-effects and being undetectable soon.

Thanks, tednlou2. Yeah, I have other meds that I take morning and night. I'm at work on night shift and it's slow on nights. I sat here and read the information about it, and at 8pm CDT took it and my other meds.

It's now 3 hours later, and I can tell I just took something new. I feel like I'm in a tunnel, or a barrel, or something. And having trouble typing too. Like typing in my data that shows beneath my posts I had to edit twice before I got it right. Weird.   lol   Other than that, ok so far.

(Proof-reading very carefully before I press that POST button.   LOL)
Infected Spring 2012
Seroconverted probably in June 2012
POZ test 10/22/12
CD4 549 VL 171,000+ as of 11/09/12
Started Atripla 11/28/12

Offline Palliate

  • Member
  • Posts: 8
Re: Newly Diagnosed
« Reply #14 on: November 29, 2012, 12:26:41 AM »
Oh yeah, and I forgot to say I am duly impressed by the fact that I get to deal with this by taking just one pill a day - unlike several I've known who had to take 15 or 20 pills THREE times a day, not so very long ago.
Infected Spring 2012
Seroconverted probably in June 2012
POZ test 10/22/12
CD4 549 VL 171,000+ as of 11/09/12
Started Atripla 11/28/12

 


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