Author Topic: For What It’s Worth... (Read 12207 times)

TexasDragon · « **on:** November 10, 2018, 01:42:21 pm »

For what its worth, I joined the club on November the 8th, 2018. I should have know better, but I had a high risk event October the 4th, 2018. He said he was negative and DDF - but I should have known better. I got feeling bad - and scared - and went in for a test October the 25th - negative. But because I had a high risk event I had a blood draw on October 27th. A week later I got a call it was inconclusive and being sent away. On November 8th I got the call to come in - they could not give me the diagnosis over the phone, but the jist of the conversation was obvious. I meet with clinic today - November 10th - to discuss, and the RNA test was conclusive and positive. My counselor said it’s the earliest she has seen an infection be ‘caught’ and that is the silver lining so to speak.

To say I am scared is an understatement. Not angry at anyone other than myself. I have a son that’s a senior in HS. I can’t let this effect his life, so not fair to him.

Just numb. I have to call a doctor on Tuesday (since Monday is a holiday) and make my first appointment. It’s going to be a very long weekend.

Jim Allen · « **Reply #1 on:** November 10, 2018, 02:37:25 pm »

Hiya

Sorry to hear about the test results.
Sounds like you're still digesting the news, feeling numb or angry are pretty common reactions I suppose.

I'm not sure I understand why you think it will effect your son in high school though. Plenty of us here are parents. Maybe you can elaborate on this concern?

As being new to this there is a lot of information you can read in the "Just tested Positive" welcome thread that gives some of the basics and basic links to lessons https://forums.poz.com/index.php?topic=2276.0 . There is also a thread on 2018 HIV meds https://forums.poz.com/index.php?topic=69107.0

What I would recommend however is not reading too much, first have your appointment and talk to the doctor. Until that first visit when I'm sure you will get more results and discuss treatment I am going to ask you to only post in this one thread.

The other forum members will be able to answer you here and provide support.

Take it easy

Jim

Jmarksto · « **Reply #2 on:** November 10, 2018, 04:01:03 pm »

Hey TexasDragon;

Sorry to hear your news. I remember my first weekend after hearing the news - I was literally in a panic, and I had a daughter in high school and had similar concerns. Looking back I put way to much energy into worrying.

My recommendation is to take care of yourself, get some exercise, sleep well, and try not to focus on it. The reality is that with today's medications your health is going to be fine.

Hang in there and let us know if you have any questions.

Take care.

MarkintheDark · « **Reply #3 on:** November 10, 2018, 06:03:05 pm »

Hello Texas. Glad you found us. I'll reiterate what's already been said. You'll be fine.

Nevertheless, yeah, you're probably going to be experiencing a lot of emotions for a while. That's normal, believe it or not. Do what you can to keep your normal activities, if only to keep yourself distracted. You're not gonna do that perfectly. But, you aren't being graded on it either.

I suppose I could give you a laundry list of things to do. Not gonna. You've enough on your plate emotionally. Instead, how about if, as questions come up, you just ask 'em here? There's lots of experience and support for you.

TexasDragon · « **Reply #4 on:** November 10, 2018, 09:59:50 pm »

Thank you all for your thoughts and kind words.

I’d like to think I would be compassionate if someone told me they were HIV positive. Yet I struggle to find that same compassion for myself from myself.

As for my son, I don’t want him to worry about me or be embarrassed. Not that I have any intention of telling anyone, but it does weigh on my mind. As a survivor of childhood sexual abuse I know what damage secrects have...and that they never stay secret without poisoning lives. Case in point.

The more I read about everyone’s experiences that better I feel - and the more hopeful I am. I am only weeks into the infection so my counselor said the potential for an OI is very low and I should be fine and may never get sick at all. That’s what I hope for now.

I bid you all peace. Know you make a difference.

JosephP · « **Reply #5 on:** November 10, 2018, 11:47:01 pm »

Hang in there Dragon! All will be well!

TexasDragon · « **Reply #6 on:** November 11, 2018, 08:46:38 am »

The hardest thing right now is the waiting to do SOMETHING, thinking with every second that ticks by I’m getting sicker and sicker. Probably more in my head than not.

Avid cyclist here - more than 40,000 miles in last six years...maybe that will help me feel better...I’ll go for a ride.

I bid you all peace. Know you make a difference.

TexasDragon · « **Reply #7 on:** November 12, 2018, 10:13:59 am »

Hi All -

I reached out today to an ID specialist in my area and in my insurance network.

That was super scary - not sure exactly why other than the reality.

I had to send them my paperwork confirming the diagnosis. The doctor will review and they will call to schedule an appointment.

Hanging on...

Jmarksto · « **Reply #8 on:** November 12, 2018, 02:27:25 pm »

Quote from: TexasDragon on November 12, 2018, 10:13:59 am

Hi All -

I reached out today to an ID specialist in my area and in my insurance network.

That was super scary - not sure exactly why other than the reality.

I had to send them my paperwork confirming the diagnosis. The doctor will review and they will call to schedule an appointment.

Hanging on...

Sounds like you are making progress. Facing the fear of the diagnosis is real, it will take some time for that to calm down. You'll feel better once you get a good working relationship with your doc and you hear from them that this will be manageable. Hopefully you have been able to get a ride or two in to help.

TexasDragon · « **Reply #9 on:** November 12, 2018, 07:15:10 pm »

I think I’m going to be ok...just different.

harleymc · « **Reply #10 on:** November 12, 2018, 07:28:12 pm »

I do remember the shock when I was diagnosed, but the actual emotion of course fades away with time. I'm 33 years down the track, I still cycle and I'm planning to get married, life goes on.

TexasDragon · « **Reply #11 on:** November 13, 2018, 10:11:36 am »

The doctors office called - first appointment is Thursday 11/15 at 8 AM.

TexasDragon · « **Reply #12 on:** November 13, 2018, 10:23:53 pm »

I was born to find goblins in their caves
And chase moonlight
To see shadows and seek hidden rivers
To hear the rain fall on dry leaves
And chat a bit with death across foggy nights.

― James Kavanaugh, Sunshine Days and Foggy Nights

I love poetry. Recently it has been such a comfort as I wait, and wait, and wait. I want to be ‘on’ something rather than just waiting.

Time moves so slow...

Dfwguy · « **Reply #13 on:** November 14, 2018, 07:21:54 pm »

Tex, it has been 30+ years as HIV poz for my husband and me. Try not to worry. Think of this like Diabetes- something that you are stuck with-but will manage with meds.

TexasDragon · « **Reply #14 on:** November 15, 2018, 01:17:38 pm »

Had my first appointment this morning at 8 - lasted about an hour. More talking than anything.

Flu vaccination. Phenomena vaccination. Lab work.

She said she will call when the results are in, but has no real concerns. Said she would be much more concerned if I had been newly diagnosed with diabetes. ‘Follow the plan, and you’ll die of old age.’

Plan is to start Biktarvy at the next appointment unless she has a good reason not to.

Jim Allen · « **Reply #15 on:** November 15, 2018, 03:46:24 pm »

Biktarvy - cool.

Glad to hear the appointment went well, keep us posted on the result.
I'm sure things will work out just fine.

Jim

TexasDragon · « **Reply #16 on:** November 19, 2018, 07:37:18 pm »

Dr called with partial results.

No other STIs.

Hep A, B, and C all nonreactive.

Waiting on the rest.

Jmarksto · « **Reply #17 on:** November 20, 2018, 02:29:11 pm »

Texas; Its good to hear you are moving forward - hopefully you've been able to relax a bit with all of this.

A tip that crossed my mind is that you'll want to build up a bit of a reserve of meds -- at least a few days, if not a week or two or more. This will help you ride through minor administrative delays with the pharmacy/insurance, unexpected travel, etc that may prevent refilling exactly on time. It's good to have a bit of a reserve. The two ways I built up a bit of a reserve were to wait a week or so between my prescription start date and when I took my first pill, and then to fill my prescription as early as possible every month. My insurance lets me fill a few day early each month.

Take care.

JosephP · « **Reply #18 on:** November 21, 2018, 10:13:01 pm »

Quote from: TexasDragon on November 12, 2018, 07:15:10 pm

I think I’m going to be ok...just different.

Oh, yes! Different you bet!

TexasDragon · « **Reply #19 on:** November 29, 2018, 01:45:22 pm »

Results are finally in (Thanksgiving added a few days!) and the Dr. called. CD4 at 468 11% and VL at 316,000! Yowza!! The Dr. said she is not overly concerned with either number given the early stage of the infection.

She did re-schedule my appointment from 12/12 to 12/4 - a week early - for a check-up, ‘counseling’ and to start Biktarvy.

Finally! I’ll be doing something!

TexasDragon · « **Reply #20 on:** December 03, 2018, 09:32:49 am »

My second appointment is now just 24 hrs away. I know the results, but we are going to go over those again - everything looks normal.

And I anticipate getting the prescription for Biktarvy. While I am happy to be doing something proactive, it brings its own set of realities.

She said she like to see her patients one month after starting meds and every three months for the first year. Every 6 months after that. As she said ‘Stick to the plan, and die an old man.’

Just nervous and anxious about this second appointment...I guess every reminder is just that...at least for the next little while.

I bid you peace.

Loa111 · « **Reply #21 on:** December 03, 2018, 12:06:39 pm »

Good luck with the appointment tomorrow & getting the new meds.

I'm always nervous when I go to the clinic, even though I logically say to myself "the worst news was the Dx, so this can be worse", I still do feel that pre-appointment anxiety in the waiting room.

TexasDragon · « **Reply #22 on:** December 04, 2018, 02:35:22 pm »

Appointment lasted all of maybe 30 minutes. But she is very helpful and has printed bullet points she wants to address.

Biktarvy it is.

On the way home I got a call from my insurance company- they use an RX manager, who called immediately after to set things up. The first package will be overnighted and I will have tomorrow at my home. No going to the pharmacy.

She said they ship a 30 day supply so it will arrive 3 to 5 business days before the last supply should run out.

I should start tomorrow night.

Very apprehensive - but happy to be moving forward with treatment and not waiting to get started.

Jim Allen · « **Reply #23 on:** December 06, 2018, 11:29:32 am »

Glad things went well.

Quote

Very apprehensive - but happy to be moving forward with treatment and not waiting to get started.

You will be fine, don't overthink it.

Jim

TexasDragon · « **Reply #24 on:** December 12, 2018, 04:39:19 pm »

FINALLY got everything settled with the insurance company and the Rx management company.

I think I had unreasonable expectations about the process. Referrals, requesting lab work and charts, authorizations - it all seems to take so much time!

I called every day - they say you have to be your own advocate. I’m not good at that and know I need to get better.

But FINALLY everything is done and they will overnight it tomorrow for delivery Friday. Probably not a bad idea to start on a weekend.

So for anyone else with a new Rx - have reasonable expectations, try not to get overwhelmed, and be your own best advocate.

Peace - know you all make a difference.

TexasDragon · « **Reply #25 on:** December 14, 2018, 11:07:49 am »

Well, my Biktarvy arrived this morning as planned. It was really a surreal moment to open the package and see my name on it. Not that I have been in denial - but that is a big dose of reality.

First dose done.

Here is to modern - and effective - medication!

I’ll keep you posted - know I care.

TexasDragon · « **Reply #26 on:** December 26, 2018, 12:26:01 pm »

Day 13.

All is good. Aside from a little acid reflux no side effects. My ID suggested OTC Prilosec for 14 days. So I take Biktarvy in the AM and Prilosec in the PM. Much better.

I made my 30mday follow-up appointment today - January 15th at 8 AM.

I’ll keep you posted.

Trac2 · « **Reply #27 on:** December 26, 2018, 04:09:44 pm »

Thanks for the update. I’m glad to hear you are doing so well on it. I have been watching your posts as I’m also hoping to be able to be prescribed Biktarvy. I’m not sure what all goes into the decision, but so far I like everything I’ve read about it.

I’ve been on Omeprazole for like ever. I don’t need to take it ever day and my pcp is ok with that and even think it’s good I don’t. However we always butt heads when I tell him I only take when I eat things that I know will cause my symptoms to flare. He says it’s not the foods and it’s a “mechanical issue”. I say, “ok well beef and gravy sets off the mechanics then”. He just looks at me like he wants to slap me. I don’t why he denies it can be food related because there are many articles written to the contrary.

I hope you continue doing well as you have been. I would think at this point if you are not having any problems with the med, it will continue to be your norm. Now we will just wait to see next month how well it’s doing on your numbers. I’m going to guess just the same.

Keep us updated!

TexasDragon · « **Reply #28 on:** December 29, 2018, 08:13:40 pm »

I rode again today - first back to back in awhile. Only 35 miles each day so 70 total.

One thing I feel is a lack of stamina - I used to ride faster and not feel so tired after, but now feel winded sooner. From the front of the pack to the middle of the pack.

I hope that my stamina comes back with time.

DrewEm · « **Reply #29 on:** January 06, 2019, 03:40:25 am »

Give it time. I noticed my hobby interests (biking and model building) returned as my viral load approached undetectable.

TexasDragon · « **Reply #30 on:** January 07, 2019, 08:02:42 am »

DrewEm -

I think you’re right. I got in just over 100 miles in the last three days and felt good - not great but good.

I’ll take that...just riding is enough.

Trac2 · « **Reply #31 on:** January 07, 2019, 08:58:00 am »

I took a mile walk yesterday and nearly killed me!

TexasDragon · « **Reply #32 on:** January 08, 2019, 03:21:05 pm »

Just navigated my first refill. It arrives Friday. One day before I run out. They will only fill my Rx at most three days early. I have two reminders set-up to follow-up one week out.

Funny how the refill seems to cause me as much anxiety as when I received the first bottle.

Trac2 · « **Reply #33 on:** January 08, 2019, 10:28:18 pm »

I take it you get a 30 day supply? My mail order prescription plan has always been for a 90 day supply. Now I am wondering if maybe ART meds are handled differently. I guess I will find out Friday.

Did you start out by stock piling some pills before you began? I've read a lot of posts on here recommending doing so just in case there is some delay like holidays etc.

TexasDragon · « **Reply #34 on:** January 08, 2019, 10:46:27 pm »

Trac2 -

I think for most drugs they will dispense a 90 day supply - but not ‘speciality’ drugs that cost $3k a month. Like most managed care pharmacies I have heard about they will only fill 30 days at a time and if you order they will send a few days early, but that’s it.

Trac2 · « **Reply #35 on:** January 08, 2019, 10:54:45 pm »

Guess I've got another thing to learn.

Interesting about the Canadian deal. I'll want to follow-up on that with you. Especially if I can only get a 30 day supply.

TexasDragon · « **Reply #36 on:** January 16, 2019, 11:43:58 am »

Just had my 2nd blood draw - hoping in 3 to 5 days for good news. My VL load was 317k in the ‘window period’ and I have been on Biktarvy now 34 days. The goal is a 1.9 reduction in VL in 30 days, so doubtful I would be undetectable - and I would be happy with the 1.9 log reduction as it's getting close!

I’ll keep you posted!

Jim Allen · « **Reply #37 on:** January 17, 2019, 12:57:49 pm »

I can recall the feeling of relief when I first got my UD result, I'm sure you will get yours soon. Keep us posted

Jim

TexasDragon · « **Reply #38 on:** January 18, 2019, 08:23:07 am »

While the CD4 and VL results are still pending, all the other result were spot in the middle of the normal range. BP 115 / 72. Pulse 62. All in all she says your in much better health than most people over 50...see you in three months.

But I did notice on the results that my eosinophils were high. Apparently they aren’t concerned about that? I asked a friend in the medical field and he said Dr’s don’t even look at it really.

Just curious I suppose. Despite my best efforts, I find the one oddball number and gasp!

I’ll update when the other numbers come in.

ridingon · « **Reply #39 on:** January 20, 2019, 08:28:44 am »

We don't really. I've seen a lot of blood test results, and tbh I dont think I've ever really paid attention to their eosinophil number... lol

TexasDragon · « **Reply #40 on:** January 21, 2019, 12:23:04 pm »

Drum roll please...

Biktarvy start date = 12/14/2018.

CD4 11/15/2018 468 11% — 01/16/2019 934 28%.

Increase of 466!

VL 11/15/2018 317,000 — 01/16/2019 98.

Decrease of 316,902!

Biktarvy kicks butt!

Jim Allen · « **Reply #41 on:** January 21, 2019, 12:31:09 pm »

Truly excellent results, congratulations

TexasDragon · « **Reply #42 on:** April 16, 2019, 10:37:22 am »

Final three month appointment. Moving to every six months.

”All is good. See you in six months unless the labs indicate otherwise - but doubtful it will.”

I'll post the lab results when I get them. I think this will be my last post to this thread as I'm moving on to just living with HIV.

Jim Allen · « **Reply #43 on:** April 16, 2019, 12:26:21 pm »

Quote from: TexasDragon on April 16, 2019, 10:37:22 am

Final three month appointment. Moving to every six months.

”All is good. See you in six months unless the labs indicate otherwise - but doubtful it will.”

I'll post the lab results when I get them. I think this will be my last post to this thread as I'm moving on to just living with HIV.

Excellent update and, really glad to hear things continue to go well

TexasDragon · « **Reply #44 on:** April 18, 2019, 10:33:25 am »

Ok - ID doc just called.

CD4 873 30%

VL Less Than 20 - Undetectable

Elevated Bilirubin is cause for concern. Liver ultrasound ordered as an ”abundance of caution.”

Ok - that's scary!

TexasDragon · « **Reply #45 on:** April 18, 2019, 10:41:46 am »

I did find this...

Changes In Bilirubin

In Trials 1489 and 1490, total bilirubin increases were observed in 12% of subjects administered BIKTARVY through Week 48. Increases were primarily Grade 1 (1.0 to 1.5 x ULN) (9%) and Grade 2 (1.5 to 2.5 x ULN) (3%). Graded bilirubin increases in the ABC/DTG/3TC, and DTG + FTC/TAF groups, were 4% and 6%, respectively. Increases were primarily Grade 1 (3% ABC/DTG/3TC and 5% DTG + FTC/TAF) or Grade 2 (1% ABC/DTG/3TC and 1% DTG + FTC/TAF). There were no discontinuations due to hepatic adverse events through Week 48 in BIKTARVY clinical studies.

TexasDragon · « **Reply #46 on:** April 22, 2019, 08:51:20 pm »

Final post to this thread...

My doc called - all is fine. Has no concerns. Increased bilirubin is ’medically inconsequential.’

Carry on!

CraigJ · « **Reply #47 on:** April 25, 2019, 05:26:24 am »

Great news Texas.
Good to see things have gone as well as could be expected over the period.
I know we both started this journey at the same time.

Wishing you all the best
C.

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Author Topic: For What It’s Worth... (Read 12207 times)