Doing okay but what next?

[Séan_Dublin]

Hi everyone,

I got diagnosed at the end of June. I had a rapid HIV test which produced a negative result (relief) but then I got a huge shock when I came home from work a few days later with a ga-zillion missed calls from my GP to call him. I'd bizarrely left my phone at home that day which I never do! Maybe it was my unconscious at work trying to save me from not having a meltdown at work. Anyway my GP, as per procedure, sent my bloods to the lab as well that day of the rapid test and that picked up an infection and I was positive. The infection was in such the early stages that the rapid test didn't pick it up.

I started medication less than a week later (Symtuza & Tivicay) but had to stop taking Symtuza as I developed a rash 10 days later. Currently on Tivicay and Descovy. Feeling fine generally but getting weird nausea feeling most mornings coupled with weird feelings of anxiety intermittently. It doesn't feel like my normal anxiety (lol). Something in me feels it's the medication. I'm hoping it will all pass eventually.

Well that's all I wanted to share. I've only so far told a close friend. I don't feel any shame around my diagnosis I just don't feel I want to shout it from the rooftops. Because that's what I usually do! I know I will tell people in time. I'm sure it will all pan out organically.

Kind of feel at a lose end now. The high energy from the diagnosis and getting used to the medication etc has now dissipated and I'm kind of like - what's next?

I'm wondering did anyone else feel like this?

S 

[Jim Allen]

Hi Séan,

Welcome to the forum, sorry to hear about the diagnosis.

What's next is carry on with life. Contuine to take your meds daily, may take a while to get used to them, visit the clinic to monitor your progress from time to time inculding the viral load and prehaps CD4's for a while if they were very low to start with. 

You mentioned the GP but have you already seen an ID doctor and had your viral load measured? I presume you have as you started treatment.

Best, Jim 

[Séan_Dublin]

Hi Jim,

Yes I’ve been to the local clinic and got all my bloods done (14 vials!). To be honest the nurse rang me with my CD4 and viral load results later few days later but I wasn’t taking anything in to be honest as I wasn’t in the right head space. I know it wasn’t bad anyway. I remember the number 800 and something?. I’m back in a few weeks and my head is in a better place now so will ask the questions I need to ask then. They told me it was caught very early as I only got infected early June so they said that a positive.

The meds are fine. I always wake up with a hungover feeling since I’ve started taking them. I take them at 7pm each evening so might start taking them in the morning. I’ll see how the next few weeks go.

Thanks,
Séan

[Loa111]

Hi Sean, Sorry to hear you got a poz DX. Welcome!

Same as Jim says, what happens next is that life goes on as normal! 

Make sure you take your pills daily, around the same time, don't miss!

You'll have a rota of a few clinic visits a year at least for blood tests to check meds are working & not effecting anything in your body. Usually you have more appointments at the beginning, then it tails off once they see all is working well.

You'll probably get the odd day here and there where you feel a bit niggled because you got this "ailment" (thats what I call it). You sound like you've a positive mindset (excuse the pun) as I do too, but here n there I get niggled for a few minutes, then I snap myself out of it.

I'm also on Tivicay and Descovy which is a great combo. Might take your body several weeks to adjust and maybe not. I take my pills in the morning when I wake up & now and then I still feel a bit weird, could be the pills, could be nothing, could be my imagination.

Guessing by your handle that you are in Dublin? So am I.

What is important, and my ID Doc told me this, is to keep fit both cardio for the heart & resistance training to help bone density. Doc says hiv can weaken them in some people over the years so exercise is a good way to combat this.

Take your time before you tell other people as there's still a lot of stigma out there, and to be honest IMO there's no real need to tell people, as this is a manageable health condition which with treatment we live a totally normal life. Pop your two pills daily and forget about it.

[Séan_Dublin]

Thanks Loa

Yeah I’ve have no real need to tell anyone. At the beginning I was listing out the people in my head and how I was going to tell him and imagining how they would react? Then I was like, what am I doing? I don’t have to do this. A close friend knows and is being amazing and that’s fine for now. I’m sitting here on the couch as we speak and I feel healthy as a trout.

Yes I’m based in Dublin and my go to is the Saint James Guide clinic who have been utterly amazing. I don’t know how they do it with all the little funding they get!

Thanks for the tips on the cardio and resistance. Definitely want to keep on top top shape so will keep all that in mind.

Can I ask how long have you had your diagnosis and how did you feel initially ?

The clinic said they hope just to put me on one pill once my resistance result comes back

[Jim Allen]

I’m sitting here on the couch as we speak and I feel healthy as a trout.

Glad to hear that.

The next milestone is getting the viral load suppressed (UD) so HIV isn't doing any uncontrolled damage, also once the viral load has been suppressed for 6+ months, it means you can't sexually pass on the virus. https://forums.poz.com/index.php?topic=71848.0

[Séan_Dublin]

Thanks Jim!

I take it you’re in Dublin too?

[Jim Allen]

You're welcome.

I'm in Co.Meath, but only by about 10 km.

[Loa111]

Can I ask how long have you had your diagnosis and how did you feel initially ?

I found out in May 2018. I’d been getting a lot of colds about 9 months before that never would go away, then a weird rash, dry coughs which got worse n worse until I ended up in hospital with pneumonia pcp. A few days later I got a call back to “discuss blood test” and found out if a very advanced DX as in AIDS!
So you ask how did I feel... I was terribly shocked! Was hoping for the first 3 weeks it was a mistake. First several weeks were really hard but I was determined to get on with life. I did not but read up on it and all the posts on this forum for weeks. I’m married with a wife n kids so telling her was really hard and thank God she was negative.
Week by week it for better. I had to change meds too and had trouble with antibiotics so nearly every 2  weeks i has to go to the clinic at Vincent’s. I just off antibiotics a few weeks ago after 2 years. So yeah was a head wrecker for all of 2018 Plus I was really tired all year as my body healed.

You’ll find my intro thread in this forum around May 2018 where I documented by journey.

Now I feel great! Life is normal. Had a jog tonight, then road my bike around, snuck in a curry chip and had a lovely evening. 🙂

You’ll feel great too and as weeks go on it’s easier. Luckily you caught it early which is great.

[harleymc]

As people live with this virus, it becomes normal and somewhat boring.

Really you can do most things you want. There are a very few exceptions, careers with direct blood contact, such as surgeon or theatre nurse, of the US military, are off the books, and many countries have migration barriers. But outside of that life's pretty regular.

Possibilities include study, volunteering, career changes, marriage, parenthood.  I hope you're feeling good soon. Have fun with this new chapter in your life.