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Main Forums => I Just Tested Poz => Topic started by: Trac2 on December 19, 2018, 10:23:45 pm

Title: Intro...
Post by: Trac2 on December 19, 2018, 10:23:45 pm
I was diagnosed Dec 11th and my doctor got me an appointment at the universityís infectious disease clinic.  Iím please that it is where I am going because it is the 2nd largest such clinic in my state.  They have 8 physicians just specializing in hiv, their own lab and a large support staff.  I just hope it isnít too overwhelming and intimidating though.   I received a pre-admission packet from them in the mail yesterday and it is overwhelming!

After the diagnoses, Iíve started in on Google like so many others seem to do.  It nearly drove me insane and had to give that up.  Often conflicting info and resources in question.  What I did get out of it is that this disease certainly isnít black or white.  Itís very very gray which is going to be very hard for me because Iím of the black or white personality.   So I decided I needed some real life stories of what it is like living with hiv.  I found some but most seemed to be poster child likeÖ everything is going to be ok.  I found this site and a more diverse selection of stories and information.  What I call the REAL stuff and I like it REAL.

Thatís about it at this point I guess, but I do have a 2 fold question if anyone cares to help.  First, what should I expect at my first visit and second, what should I be asking at this visit?

I would also appreciate any good reliable site links that I can trust.
Title: Re: Intro...
Post by: Jim Allen on December 20, 2018, 01:43:30 am

Welcome to the forum, sorry to hear about the diagnosis.
How have you tested positive? Was this just on the antibodies test at primary care point? Have you had confirmation testing completed post this?

I received a pre-admission packet from them in the mail yesterday and it is overwhelming!

Yeah, I suspect many find it overwhelming at first. It will soon be routine though.  ;)

The internet is filled with outdated or context less information or opinions presented as facts ... Its can be overwhelming, we have some easy to digest information and links to POZ Lessons for newly diagnosed here:  https://forums.poz.com/index.php?topic=2276.0
As for finding gray, you can find that in everything if you want, i'm not sure what gray you're worried about?

Anyhow focus on "what is" or the black & white is what I recommend.  Its 2018 you have a virus, without treatment it will sooner or later cause damage, that can lead to an early death. Thankfully you were diagnosed and the virus is very manageable as it can be suppressed with medication, If you have access to treatment than take your meds and live your life! Don't overthink it.

As for stories well everyone is different, and stories also depend on the time they where experienced, a story in 1988 is generally going to be vastly different to 1998, and that's going to be different again from 2008 & 2018, this mainly as care and treatment has develop. It also depends totally how late someone was diagnosed, what damage was already done, permanent damage or additional coincidental health issues and level of access to meds etc etc etc.

You will soon have your own 2018/19 story but as everyone posts a story here so feel free to browse and read them.

Take it easy

Title: Re: Intro...
Post by: Loa111 on December 20, 2018, 05:56:14 am
Sorry to hear about your new Dx. Yes, there is a lot to digest, to learn, and it can be a bit emotional for a period of time. I did the same when I was Dx'ed in May. I was stunned and spent weeks n weeks reading over n over, especially stories of how people live a normal life like anyone else.

You'll have blood drawn for testing at the clinic obviously, and the doc will explain the results when the lab processes your samples. Can take a couple of weeks to get this info depending on clinic etc.

The bottom line and what all this will boil down to is... you'll take a pill a day (or two as I do), be very strict with your pills and do not miss a day ever, within a few weeks to a few months you will become Undetectable (google U=U), you'll go back every few months for blood tests (perhaps a bit more frequent at the start to first year, and then less often as you stay stable. Some of the people on here just go once every 6 months) , and that will be it! In time you will kind of forget you have this condition, as nothing really changes, except for the daily pill.

You might discover you become more health conscious, eat a better diet, exercise & rest better as a result of the Dx.

Might be a bit different at the start if you have a very advanced Dx e.g. you have other illness or OIs as we call them, and you are weak and in poor health (this is what happened me). In that case, you will have clinic visits frequently for the first few months, or if there's any small complications with initial treatment. Once everything is ironed out, you're visits become less. I'm still going at least once a month, sometimes every 2 weeks but I'm expecting this to drop down for 2019.

I'm about 8 months since Dx, & 7 months on treatment. I feel better now, and life is pretty normal again. The same will happen for you.  :)
Title: Re: Intro...
Post by: TexasDragon on December 20, 2018, 07:35:45 am
There is no black or white with this - nor is there for diabetics or cancer patients, both of which my doctor would be much more concerned about.

There may be issues and bumps along the way, but as my doctor says ďStick to the plan, and die an old man.Ē

Stay strong - get a plan - make it work!
Title: Re: Intro...
Post by: harleymc on December 20, 2018, 07:01:51 pm
I'm 33 years down the same journey.

Google won't necessarily be your best friend as google makes no distinction between old outdated information and  what is current, what is opinion and what is backed up by data.

I'm trying hard to put myself in the newly diagnosed/ new medications mindset, so I can think of appropriate questions.

Questions about your medications and potential for any side effects are probably best addressed by a pharmacist.  But I would certainly be asking about how to get an appointment if by some chance the medications aren't agreeing with you.

It would be definitely worth your while to take a list for your doctor of any medications (whether prescription or over the counter) you take this would be to make sure there are no interactions with your new pill(s).

Other than that it is worth asking what blood tests will be done and when results come back and how you want to receive your results.

Title: Re: Intro...
Post by: Trac2 on December 20, 2018, 09:35:06 pm
Jim, my doctor used the Western Blot test.

I want to thank everyone for giving me some insight.

I love the quote, TexasDragon.  Will I get a plan from the clinic?  What all does it entail?  I also noticed that you are on Biktarvy.  I've already looked at the latest meds and seems like it would be what I would choose if I have a choice.  I don't know how they decide. 

So I called my primary care doctor today to ask about getting my CD4 and VL load.  He rather brushed it away saying by the time I'd get the results I'll at the clinic getting the same test done.  I have no idea how long I've had this virus and now I find myself waiting for the next shoe to drop.  I have thoughts that any day now I may end up in the hospital with a major OI.  I know it may seem silly but just sharing what is going through my head.  It just seems to take too long to get treatment.  I never knew how long a day can be until now :-\

Title: Re: Intro...
Post by: TexasDragon on December 20, 2018, 09:59:53 pm
Trac2 -

The Ďplaní is to keep a good working relationship with a doctor, take the meds on time every day, and get the follow-up care. That simple!

At least thatís what she tells me!

I say that in jest really but itís not that simple - at least when you are trying to navigate those first weeks and months after the DX. Everything is in slow motion - and it doesnít seem like a priority to anyone else but you. Iíve been there and done that and guessing most on here have as well.

All I can say is that it does work out - maybe not today or tomorrow, but it does.
Title: Re: Intro...
Post by: Trac2 on December 20, 2018, 10:19:21 pm
Hey thanks.  Sounds like you got a really good doctor there.

I'm sure I'm not unique in my thoughts.

I do worry however about those follow-up visits.  This clinic is an hour away and what do I do if something happens and I need treatment timely.  I've seen here where a lot of the specialist have their patients attended by their own general practitioner, and if that is the case I will have to be looking for another because I don't see mine dealing with it.

Title: Re: Intro...
Post by: TexasDragon on December 20, 2018, 10:33:06 pm
Trac2 -

My doctor is about 30 minutes away. You can see in my profile signature line when I saw her, first visit 1/15, next 12/4. she doesnít want to see me again until mid January after I have been on meds 30 days. After that every three months for a time or two, then every six months.

Thatís not too bad - once you settle in and get on meds, if you need something timely, itís probably not going to have anything to do with your status.
Title: Re: Intro...
Post by: Trac2 on December 20, 2018, 10:45:41 pm
True perhaps unless an outside physician unfamiliar with HIV treatment needs to prescribe medication. ???
Title: Re: Intro...
Post by: TexasDragon on December 20, 2018, 11:05:50 pm
Trac2 -

True. I see a neurologist as well. I have not disclosed to him - or anyone else - and doubt I ever will. My ID Dr said itís up to me but no reason to. If he changes my meds (Iíve been on the same ones almost 10 years), Iíll run it by her, and if necessary I would contact him if we had an Ďissue.í

Iíll,worry about that if and when it becomes an issue. If nothing else, I am learning I canít control everything - only my actions and reactions.
Title: Re: Intro...
Post by: Trac2 on December 23, 2018, 09:41:19 am
I've had a few night this past week where I woke up with unusual perspiration.   Sometimes it was a feeling of like a hot flash and the back of neck and breast bone only were wet.  The pillow had a small damp spot as well.  Other times it's much more mild.  Not feeling hot but still a little clammy.  Either way, both seem to disappear after I wake up and I can goo back to sleep.

Everything I've read describes night sweats as "drenching" so I'm not sure what is going on.  I also can't find any physiologic explanation of night sweating.  In other words, what is the body doing to create the event.  Is it like a sudden temporary spike in temperature or hormonal of what?  Anyone Know?
Title: Re: Intro...
Post by: Jim Allen on December 23, 2018, 09:47:16 am

I merged your posts for the time-being. Lets keep your posts and answers in one thread until you have had your HIV follow-up appointment. Thanks.

As for the night sweats, literally it could be just about anything or nothing at all. People living with HIV get sick, people without HIV get sick, if you are worried see your regular Doctor.

Take it easy


Title: Re: Intro...
Post by: Jackmydin on December 26, 2018, 02:45:28 am
Sorry to hear about your diagnosis. But glad you make it here and embrace the condition in the right way. This forum has been the most helpful, and educational one with people like Jim and others looking after each other and offer needed advices.

The first few appointments with the specialist could Start off difficult, unless you are prepared for this emotionally and mentally adjusted. I was in self denial myself before. So I would say the sooner you prepare yourself receiving treatment the better. It's for your own good and people around you too. Like others would say, make sure you keep almost 100% adherence to your pills.

Continue with your life, and start improving your lifestyle. I had bad case of diarrhea before, night sweats, drug allergy, rashes etc. All I learn how to deal with one by one by sharing and asking people around here.

 Better start taking good care of your body now my friend :)
Title: Re: Intro...
Post by: Trac2 on December 26, 2018, 04:12:14 pm
Thanks Jackmydin for your input.  My appointment is tomorrow and Iím more than ready although I admit I am apprehensive.  It seems amazing how time has seemed to slow down since my dx.  I donít know how many Tcells you lose per day but I keep thinking this getting started to treat takes too long.  I keep telling myself that Iím not the only one with this disease and I must wait my turn.  I also question why they donít have you come in and have the blood tests done earlier so that when you meet the ID he has a better picture.   I am an impatient person by nature and in fact plan in my introduction with the ID to let them know that I am an ďimpatient Ė patientĒ.  Just a warning you might say.  I never want to be a pain to anyone and always try to be kind and all, but I do have that character flaw.   I know when I leave the appointment I still have to wait (again) until I know something more definitive.  Ugh!

Shortly after I tested positive I prayed to God that I make it through Christmas without incidence.   WellÖ Christmas Eve I had a bout of diarrhea but made it through ok at an evening gathering.    Yesterday I had a couple brief anxiety attacks during family gathering (they donít know), but made it through it ok.  When I got home and got on the computer I had what I call a brief visual disturbance.  It was the second time the past few weeks.  Hard to explain but seems it is one eye out of focus  a bit and only lasts a few minutes and then the eye feels a little fatigue.  In between those 2 episodes I had 3 sharp pains in that same eyeball after lying down for a nap.  I just had my annual eye exam in October and got new eyeglasses so either they missed something or whatever is going on (if anything), has come on quickly.  I will mention it to the ID tomorrow.

Wish Me Luck!
Title: Re: Intro...
Post by: TexasDragon on December 26, 2018, 04:34:49 pm
Hey Trac2 -

We have all been there and felt the same way. Iím not sure where you are in your diagnosis - mine was very early, I was in the Ďwindow.í While I was really anxious to Ďdoí something, my ID dr was not. A day, a week, or a month wonít matter she told me. Aside from my anxiety, I think she was right.

And for meds, be patient there as well. When your dr hands you the Rx - or sends it to the pharmacy, you can expect some time for your insurance company to review and approve. Obviously a big difference in a $15 Rx for a Z Pack and a $3,000 30 day supply of Biktarvy.

And make sure your dr gives you the co-pay assistance card - with that my meds cost me zero.
Title: Re: Intro...
Post by: Trac2 on December 27, 2018, 05:53:47 pm

Had my first appt with the ID clinic today and it was overwhelming and intimidating for sure.  Met with a counselor, support team member, a PA and finally the doctor.  Oh, and of course the vampires.  I got a lot of information both verbally and written.  The doctor was much more of a matter of fact type but still easy to talk to.  After some Q&As and exam I sense he suspects some more underlying issues like possibly neurologic and or cardio vascular. 

As for my recent eye issue... he said he doesn't see any type of infection or inflammation BUT told me there could be a much more serious issue and to contact my eye doctor asap and request a digital retinal test which actually was done in October.  So I called and go in tomorrow.

At my request I asked for a referral on the neurologist part because in the small town where I live we only have one and he don't have a good reputation.   Luckily there is a neurology department in the same building as the infectious disease clinic so they are going to try and make my appointment for the same day I return for my next schedule appt.so I don't have too make another trip.

He also told me that I need to get a PCP that is in the field of Internal Medicine instead of the GP I have now, ASAP.  He went on to explain what his role is (limited) and that they coordinate / communicate when and where needed with other physicians.  Ok, makes sense.  Nothing like being blunt about it.  I called my current GP on the drive home to make the switch and they will call back when I can get in.  It should be seamless because they are all in the same office complex.... family docs on one side and the internal medicine one's on the other.   Did I mention I live in a small town???

And of course and expected, the ID told me I had to quit smoking.  To those of you out there that had smoked or still do, you know how hard an order that is at this time.  Any suggestions from those who understand and have some tips please share. ???

The ID also seemed anxious about my labs as much as me saying, he was going to put a "push" on them.  They have their own on site lab that just serves their needs.  The support people did get me set up on the My Chart thing which should be pretty nice depending on how much they reveal and when.

So here is my "new norm".  Thankfully I have good health insurance.  I will probably meet my annual deductible within the first 6 weeks of 2019!!! :o

After making those two phone calls on the way home I started re-hashing everything in my head and by the time I got home I was depressed.  I'm familiar with anxiety but not with depression and I don't like it. :-[

Title: Re: Intro...
Post by: Jim Allen on December 28, 2018, 06:48:39 am

Glad to hear overall things went well.

The ID also seemed anxious about my labs as much as me saying, he was going to put a "push" on them

Yeah indeed, so still no lab results. Okay well keep us posted when they come in.
Do you have a follow-up already planned for starting treatment as well?

Had my first appt with the ID clinic today and it was overwhelming and intimidating for sure. 

Yeah, fist time comes with anticipation, in-taking a lot of information, dealing with unknowns and additional tests to start charts etc etc. Things will get more and more routine and far less intense with time ;)

And of course and expected, the ID told me I had to quit smoking.  To those of you out there that had smoked or still do, you know how hard an order that is at this time.  Any suggestions from those who understand and have some tips please share. ???

Yeah, smoking will kill you.

To be blunt its a total fucking bastard to quit smoking. My only tips are; Only quit when you are motivated and ready to do so, and keep in mind what works for one person may not work for you, find your thing. I quit dozen of times over the years before finally really quitting for good and i am never going back, for me vaping initially helped me to finally quit, although the first week on vaping was really rough

After making those two phone calls on the way home I started re-hashing everything in my head and by the time I got home I was depressed.  I'm familiar with anxiety but not with depression and I don't like it. :-[

Here is what you need to re-hash - Start treatment, live your life, don't dwell on things you can't change..

Look being newly diagnosed can be a total mind fuck for some to be blunt, we all cope in our own-ways, and people have ups and downs that's relatively normal i suppose, that said do keep an eye on any depression as depression is serious, its not something to face alone and do keep your doctors posted about how you feel, this is really important.

As newly diagnosed person it might be worth looking into face to face peer support if available and/or one to one support to help you through this time.

Take it easy, keep us posted

Title: Re: Intro...
Post by: Trac2 on December 28, 2018, 12:20:48 pm
Thanks Jim for your comments.... much appreciated.

I'm glad you mentioned the vaping.  I've done that before to help quit and I liked it and was thinking of trying it again.  I know the doctors are not all that keen on it either, but I still think it's got to be a whole lot better alternative to cigarettes.  But like you said I need the motivation and although this dx gives me that, the anxiety inhibits it.  Hopefully in time it subsides at least enough for me to act.

 I go back to the ID on the 11th.  They gave me a packet to give my new PCP and I dropped it off today on my way to my eye doctor appointment.  I see the new PCP on the 8th.

Eye appt:   He seen nothing different from the last time I was in (October).  There is a abnormality of one blood vessel that has always been noted but nothing has changed and he doesn't think it is a problem.  He thinks it is just eye fatigue since I changed glasses and got smaller lenses.  I have tri-focal and since the lens are smaller so are the windows.  Makes sense.  He suggested I get a separate pair of glasses just for the computer.  I asked him for a copy my file so I could get a second opinion with a Ophthalmologists.  He was a little pissy but obliged.

As for support... the counselor at the clinic also talked about it and gave resources.  Of course they are all in the big city.  I really don't see myself in any kind of group type thing as I'm more of a private person, strong willed and self controller.  I have a few friends that I feel safe to be open with but haven't told any of them of my status.  I definitely would not do well in a group setting.  More of a one on one person here.   In my small town there is a clinical psychologist that I've heard a lot of good about and may consider.  And of course, this forum is a very good resource also.
Title: Re: Intro...
Post by: Trac2 on January 02, 2019, 10:19:19 pm
Got a call from clinic today with some results.

 CD4 - 286 / 13%
 VL - 71,800

I go to the clinic on the 11th to discuss "treatment options" as my doctor there said at my initial appointment.  With that said, I have some questions.  I've heard that sometimes these doctors have their own preferences in this already made and can pretty much sell you on their opinion.  I know we want to trust them as well as we should but after only meeting the with the guy once I can't say I'm there yet on that.  I understand that resistance and genotype testing is part of the equation in treatment options, but are there others things (if any) that are?

From my research with limited understanding on all this, I like what I've read about Biktarvy.  It says that it can be used as a first line treatment option.  I guess what I want to know (other then my first question), from you all that has been there done this is, what to expect in this.  I'm afraid that it is going to be to scientific and over my head kind of discussion and overwhelming.

Any input would be appreciated.

Title: Re: Intro...
Post by: TexasDragon on January 02, 2019, 10:36:27 pm
Trac2 -

Not much help here. My ID dr basically said ĎIím writing you an an Rx for Biktarvy. One pill a day, food or no food, very few side effects.í She said she has switched a number of her patients to Biktarvy.

That was pretty much the discussion.
Title: Re: Intro...
Post by: Trac2 on January 02, 2019, 10:43:39 pm
That seemed awfully easy.  Did you have any perceived idea of what to expect going into that appointment?  And, did you look at any of the treatments prior and if so had any preference?

All I know is what they said,  "will discuss treatment options when you come in".
Title: Re: Intro...
Post by: TexasDragon on January 02, 2019, 10:53:55 pm
Trac2 -

None really. I was exposed, diagnosed, had two appoints, lab work, and got the Rx all in less than 3 months. Was a blur and still is. At that point I was simply doing as I was told. Thatís not to say I had not read up on the various meds - including the initial study on Biktarvy.
Title: Re: Intro...
Post by: Trac2 on January 02, 2019, 10:59:00 pm
Tex, I see your next appt. is just a few days after mine and one month on treatment.  I will be anxious to see your new numbers. 
Title: Re: Intro...
Post by: DrewEm on January 06, 2019, 03:35:49 am
I take Genvoya which is a single pill once a day. When I had my diagnosis I had a CD4 of 8 and a viral load in the millions - and I had to take HAART drugs via an infusion.

When I see my ID doc now,  I actually go through several "visits" - first are the med students, then the fellows, then the nurse practitioner and finally the ID doc I see at Jefferson in Philly. It is an education and an experience at each point, and while my appointment may stretch to two hours, I know I'm helping future patients. Plus, I usually learn something.
Title: Re: Intro...
Post by: Trac2 on January 06, 2019, 09:23:08 am
Thanks Drew, your appointment description sounds very similar as mine although it was my initial one.  Sometimes it seemed overwhelming but I'm sure I will get use to it over time.  I go back this week.
Title: Re: Intro...
Post by: TexasDragon on January 06, 2019, 09:34:42 am
Trac2 -

Keep us posted!

ĎStick to the plan, and die an old man.í
Title: Re: Intro...
Post by: harleymc on January 08, 2019, 04:55:56 am
Glad to hear things are going well. You're slaying this..

You mentioned anxiety and also rehearsing questions and to do lists. Writing those things down will help you constantly focussing on them.

Just look through the things you have done just in this one thread . You've done a follow up visit, gotten your test results, had your eyes checked arranged for a new primary care doctor.

Make lists, cross them off. Own your achievements.

By the way with your blood test results you're not vaguely at risk of AIDS related conditions.  Any health niggles you are having are just the regular stuff that people get In the general population.

You can unbuckle your seatbelt this ride won't be bumpy. Please observe the no smoking signs
Title: Re: Intro...
Post by: Trac2 on January 08, 2019, 12:24:29 pm
Thanks Harley for your comments and encouragement.  I just returned from my first appointment with the new PCP.  I REALLY LIKE this guy.  He is young and only been in practice a year and a half.  His father also works in the same practice which has a total of 5.  He is going to schedule me for a vascular ultrasound.  I go back to the clinic Friday for a 8:30am appt with a neurologist and then ID at 1pm to go over treatment options & labs.  Needless to say I will pack a lunch.  lol
Title: Re: Intro...
Post by: Mightysure on January 21, 2019, 05:12:22 pm
I guess, when you say black or white, you want to know if this will take you out or will it be a non factor in your life?

Well, no one knows for sure because every one's physiology is different coupled with a different virus. Most likely, if you take your meds,  live a relatively healthy lifestyle and keep your appointments, chances are it won't be a big deal.

I was diagnosed 4 years ago as part of a standard check up with a new doctor. I had no symptoms and only tested becsuse he suggested and it was no extra cost.

Well, you can imagine my shock when the nurse told me everything had came back but that one and she wouldn't tell me why over the phone. So I rushed to the health department, took an oral rapid and blood prick rapid, and they both had faint lines..

For whatever reason, a calm came over me as Ieft the lab to have a full on test done. In the midst of all that, I was not going to go down without a fight.  I heard things were. Better these days than the 80s and 90s, but it was here where I read articles and read real peoples stories in which I really relaxed and knew I'd be ok.

I got my initial lab work in a week, while expecting longer, because my VL was too low for resistance testing.

So my doc prescribed Stribild to see if it worked.  That was the most stressful thing. Having some resistance and making things worse with this pill.

But fortunately, within 4 weeks, I was UD and my lowest CD4 has been 830.

Before my clinical trial, I was taking a pill per day and not even thinking about it. No fear of hospitalizations, no images of dying patients with Kaposi sarcoma lesions popped up.

It is a manageable condition now that isn't even transmittable if UD for 6 months.

Not that there is ever a good time to get this, but if there is any optimal time, it is now. 
Title: Re: Intro...
Post by: TexasDragon on January 21, 2019, 07:20:20 pm
Check out my profile signature line.

5 weeks on Biktarvy.

I feel great - back to cycling 150 miles a week.

ĎStick to the plan, die an old man.í My ID Dr. says.

Totally agree with Mightysure!