Newly Diagnosed, shock is wearing off

[Live040314]

Greetings all,

I was diagnosed on April 3rd, this is all very surreal to me and i have been running on empty lately. Reality is starting to set in and i am looking for support, whether it be an ear to listen or just a simple hello.

This all began for me two Thursdays ago while i was at work. My doctor called and told me i was positive while i was sitting at my desk. The shock of the information drove me from work very quickly. The next few days were an auto pilot for me. I called my partner the same day and told him to come home, i broke down and told him the news, within a half hour we were with my mother and i was explaining it to her, she hugged me, reassured me that it was all going to be okay and moments later my partner and i were sitting in the doctors office reading the positive result CDC information that was on his screen regarding my test. I had confirmation lab work drawn and he received his first test. i spent the rest of the night in conversation and delusion about the diagnosis and my partner and mother held tight to the hope of a false positive. The next morning i dragged myself back to work and stared blankly at a computer screen, trying to comprehend the enormity of what i had been told. That night i informed the two people in my life i considered to be at risk for transmission that they should be tested. Those two conversations were the hardest for me. The thought that they passed this to me or i to them was gut wrenching and still is (they have both tested negative but are still within the window). The next morning as i was walking down the terminal to my plane (i had a work trip in DC for the next 5 days) my doctor called to tell me that my confirmation results were in and it has been confirmed that i am positive. There was no time to dwell on this, i had a plane to catch. I spent the next 5 days putting on a smile for clients, shaking hands, and going about my life trying to ignore the thing that was literally killing me inside. Upon my return i embraced my partner and broke down again, he informed me that his initial and confirmation results had come in while i was away and he was also positive, heartbreak times two! We very quickly searched the internet for HIV specialists near us and set up an appt for the next day. We made the 90 mile trek, went in and had our initial lab work pulled, spoke to the doctor, had very reassuring conversations and went out for a nice dinner after. The next days were less and less about HIV and more and more about how in the world we are going to afford our treatment. Research with our insurance companies proved to be great for him (almost 100% coverage with the exception of a $30 copay on the meds), not so great for me. The medication options that my doctor discussed with me all look to cost about $900 a month after my insurance pays their share. I have literally spent the last week so concerned about how we are going to afford this and maintain some resemblance of life that it is exhausting me.

Our initial labs came back on Tuesday, my CD4 count is 736 with a VL of 12000 and his was 430 with a VL of 15000. We have a follow up appt next Thursday to start meds.

Here i sit, Friday night, the work week has ended and i am finally able to breath for the first time since our mutual diagnosis. I have no idea where this came from, how we are going to afford treatment and little positive reassurance about my future. All i know at this point is what everyone keeps telling me, "it's going to be okay" i want to believe them. Do any of you have any advice? Thanks for listening to me ramble.

[AusShep]

Hey Live,
Sorry to hear about you and your partners diagnoses.  It will take some time to adjust, it's different for everyone. 

One thing you should look into is the manufacturer copay assistance cards.  You can sign up before filling your Rx for the first time.  This could make the treatment "free" for your partner and knock up to $400 a month off of your bill.

There is a links on the treatment section at the top of the page for the programs, or you can go to the drugs website.   http://www.aidsmeds.com/articles/PAPs_Copays_19740.shtml

[Live040314]

Thank you AusShep I appreciate the advice. I had not heard of these assistance cards in anything i have read to date, so thank you. Out of curiosity, what does the "converted" mean at the bottom of your post?

[AusShep]

Thank you AusShep I appreciate the advice. I had not heard of these assistance cards in anything i have read to date, so thank you. Out of curiosity, what does the "converted" mean at the bottom of your post?

That's when I tested poz.  Some signatures have a bunch of test results, or medications taken, etc.

[pittman]

Research with our insurance companies proved to be great for him (almost 100% coverage with the exception of a $30 copay on the meds), not so great for me. The medication options that my doctor discussed with me all look to cost about $900 a month after my insurance pays their share. I have literally spent the last week so concerned about how we are going to afford this and maintain some resemblance of life that it is exhausting me.

So sorry that you guys are going though this, but I'm glad to hear that it sounds like you have some support in each other and your mother. Health wise your numbers are good and indicate that you have caught it pretty early. Treatments are very effective, and you will be fine on that front.

Does your insurance have an annual maximum out of pocket? Many do. For example, I have a $1200 deductible, and then my insurance only pays 80%. However, I have a max out of pocket of $2500, after which I pay nothing.  So each year, I have to save up $2500 for the beginning of each year because in the first couple months a doctors visit and a refill will quickly make me reach that limit. I just know that every year I must plan on having enough to cover my max out of pocket.

Also, if you can choose from different plans during open your enrollment period, now you will want to start calculating which one is the most cost effective for you knowing you will have higher than normal costs.

And as AusShep advised, you might qualify for the co-pay cards if your income is not too high.

[YellowFever]

Upon my return i embraced my partner and broke down again, he informed me that his initial and confirmation results had come in while i was away and he was also positive, heartbreak times two!

Think of it as burden divided by two. As you may have realised by now, there's a lot of fact-finding and soul-searching that happens in the initial stages of a diagnosis. So as dreadful as it is to find out that your partner is poz, hopefully you'll be able to help each other on the journey.

Also, keep in mind that you do not necessarily need to start meds right away (despite what your doctor says). Your numbers: 736 with a VL of 12000, look very good by any standards, so take your time to sort things out. Even if that takes a year or two, as long as you maintain regular CD4 and VL checkups, I think you'll be fine

Oh and welcome to the forums.

[buginme2]

If you and your partner live together can't he add you to his insurance? 

My partner and I are on  each other's plans so we are double covered.  We have since gotten married so that reduced the cost even more but you can do it as domestic partners also. 

[Irish Eyes]

I signed up for Obamacare, Bronze with Anthem Blue Cross, with a $5000 deductible, on 1/1/14.

As I was able to enroll in/with ADAP which covers my monthly $287.00 premium (I recently got a refund from Anthem for the three months I had paid for).

Though it was my understanding from case manager that all expenses (doctors visits and meds) would be covered between ADAP and Anthem, I did just receive a bill (for Jan. 2014) from my doc clinic for $1200 for lab work.

At last doc appt I enquired about the bill, but they were unable to answer as it was a 'billing' question.

I called Anthem and UCSD (the med system my doc is in) and though the dates didn't quite match, plus I was unsure/confused with their explaination as to why the charge was valid I just paid it as due date was approaching.

A small price, error or not, to pay for 3 months doc visits, multiple blood draws, and 2 months of Stribild.

[drewm]

Your initial numbers are pretty good. Getting through the maize of insurance and assistance programs can be a nightmare. I encourage you to take advantage of social services in your area (not sure where that is) but in both Houston (where I used to live) and Indianapolis (where I live now) there are medical case manager and social services available through Ryan White grant programs. These services can be invaluable in navigating insurance programs etc.

Take some time to breathe. It will be OK. 

[Live040314]

Just an update, it has been 23 days now since my partner and I first learned of our infections. The time has been a mixture of emotions and education. We have both been on medication for two days. No side effects as of now, not expecting any. The reality of the situation has been different for us both. It's true what they say, each will handle this in their own personal way. I seem to be the type that has an insatiable appetite for information, whether it be personal stories from other HIV positive individuals, news articles relating to HIV or medical journals regarding the virus and treatment itself. Knowledge is power in my opinion. He is the type that has very much taken this in stride with little to no change or concern. He is just doing as told and carrying on. We have been determined from day one to make this an insignificant part of our lives. (Whether it ever will be is beyond me.) life goes on and so must we all. I appreciate each and every person that has given me insight and guidance from this forum. Your personal knowledge of life with HIV is invaluable. Thanks again for helping me let go of my fear.

[Live040314]

Is insomnia common? I feel like I havnt been to bed in years and when I do go, I lay there and toss and turn until 4am and wake up for work feeling more tired than when I went to bed to begin with. It's getting kind of old, I've always been like this since I separated from the navy but even more so in the last 2-3 months. Is it possibly related to the diagnosis, will the medication eventually help? Is there anyone else that deals with this?

[Theyer]

For some depending on there meds interupted sleep , changed sleep happens. Insomnia is also a feature off stress , talk to your Doctor about it , work out your stance on sleeping Pills . For you this was pre meds , I would take this to your Doctor and start working out ways to deal with it,its debilitating and stressful as you know.

I have bouts, used sleeping Pills and therapy to good effect.

[pittman]

I occasionally have sleeping problems as well. If work was stressful, I tend to relive it while I sleep and it keeps me up.

There are general recommendations to try:
- Save the bed for sleeping... no reading or TV watching. (um, yeah, sex is just fine, if the dinning room table is not cleared off )
-try to stick to a routine time  to go to bed and to get up to set up a sleep pattern
-no computer or tablet use for 30 minutes before bed. The blue-tint light common in the screens can trick your body into thinking its daylight
-some light exercise or stretching about 30 minutes before bed can help
-sleep aids such as over the counter or prescription pills.

And is your bed comfortable?

[Kardean]

More than likely the diagnosis.  It's only been a month and look at what you have already learned and accomplished.  But as you know, it didn't come without a lot of mental effort.  It's hard to slow the brain down and sleep easily when it is/has been overwhelmed.

What treatment regime are you on?  I'm sure you've research for possible insomnia side effects.  Did your partner get the same regime as you?

[Live040314]

Thanks Pittman, the bed is kind of comfortable although the dog thinks it owns the bed, not to mention my partner, it's time for a King size.

Kardean, we are both on Complera. I take mine at noon and he takes his around 7-8pm. If there is one thing that is true, the mind is definitely on overload although life in general does seem to be getting back to normal. Mostly because it just continues and is dragging me along with it. I'm allowing that to happen. I've researched the side effects and I suppose it's related to the medication but most likely not. It seems to be something I've been dealing with for a while. Honestly I've thought of being evaluated for PTSD from my time in the service because of it. Then again I guess it's also possible that I'm just tired from the immune system changes going on inside me. I've been told that it's takes a lot of  energy when the body begins fighting a virus, HIV included. So who knows what the exact culprit is, most likely all of the above.

My diet and excercise habits probably don't help. Those two things actually concern me quite a bit. As I've been following other peoples threads and experiences it seems like I'm behind the curve on those. I'm not used to eating regularly or well. And regarding excercise it seems like a lot of HIV positive people propagate this impression that they and all people diagnosed with this have become or need to become gym rats and body builders??? Is that really expected and realistic? I'm trying but at the moment I feel like I have to change everything about my life or I will not do well in the long run. Maybe it's a silly concern.

[Ann]

And regarding excercise it seems like a lot of HIV positive people propagate this impression that they and all people diagnosed with this have become or need to become gym rats and body builders??? Is that really expected and realistic?

It's not a "silly concern" and I can see where you might get the impression that everyone exercises to exhaustion. You do NOT need to become a gym rat. However, it is a good thing to incorporate some exercise into your life.

It can be as simple or as complex as you want, whatever fits your lifestyle, budget and time constraints. It can be as simple as taking the stairs instead of the lift, walking to places nearby instead of driving, and doing sit-ups, press-ups and other simple exercises at home. It can be as complex as joining a gym and getting yourself a personal trainer. A minimum of exercise is important for anyone who wants to be healthy, hiv positive or not.

I'm trying but at the moment I feel like I have to change everything about my life or I will not do well in the long run. Maybe it's a silly concern.

Slow down and take one step at a time. If you try to change everything all at once will only set yourself up for failure, particularly where exercise is concerned. Start slowly, maybe taking a 20 minute walk three times a week, increasing the time and frequency as you become accustomed to the extra activity.

Same thing with diet. Start eliminating one or two junk foods a week and adding more fruit and veg in increments. Have an apple instead of a bag of doritos for example. Drink more water and less pop/soda. Keep at it until you get your diet to a better place than it is now.

Living with hiv isn't a sprint; slow and steady wins the race.

[drewm]

Is insomnia common? I feel like I havnt been to bed in years and when I do go, I lay there and toss and turn until 4am and wake up for work feeling more tired than when I went to bed to begin with. It's getting kind of old, I've always been like this since I separated from the navy but even more so in the last 2-3 months. Is it possibly related to the diagnosis, will the medication eventually help? Is there anyone else that deals with this?

I had insomnia from hell upon being dxd. Went through several scripts before finding something that worked. Hope you have talked with a physician about this. Hang in there