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Autor Tema: Recently tested positive and first pill  (Leído 1524 veces)

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Desconectado npm9

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Recently tested positive and first pill
« en: Mayo 21, 2021, 05:50:10 am »
Hi everyone,

I'm a man in my early 20s and I tested positive in HIV back in April. I had donated blood, and in my country you receive a letter after the donation saying thank you. The letter that I got, however, was different this time. It said that something in my blood was off and I should go to see the doctor in the donation center.

When she told me I was HIV+ I was a bit shocked (the last quick test I had done tested negative, back in December, and I hadn't had sex after that, so the test did not detect it properly). My first thought was "There's a solution". Of course, it's not the best solution, I wish I could take a pill and be cured, but the solution that we have is quite good, excellent if considered how much it has improved in a relatively short span of time. Bear in mind that I'm in my early 20s and, although I know about the HIV/AIDS crisis in the 80s-90s, those images aren't in my mind as part of a lived experience, so I guess this can make it easier to cope with. Don't get me wrong, I'm not trying to trivialise it: it's a complex issue, but I know that it can be treated. I'm not afraid of HIV, but I do have respect for it. I guess that having information about what life with HIV is like saved me from being in an anxious state. I knew that I would be fine (both because of the medication and thanks to the free healthcare that we have here, I'm so grateful for that). I knew that having it detected was good, because I could start the treatment and take care of myself.

I immediately told my parents when I got home. A bit of a shock. They knew that you could live with it, but didn't know about U = U. I told them that and also that HIV+ undetectable women can get pregnant and have an HIV- kid, and that calmed them down a lot. I also told a group of friends. The reaction was positive and different: again, perhaps because it's a different generation. They did know about U=U and that the most important thing was that I start the treatment. Imagine if I hadn't gone to donate blood…

The worst part of everything, for me, hasn't been the diagnosis, but *waiting* to start the treatment. Since I tested positive after the blood donation, I had to wait for them to confirm the results, then I had to talk to my family doctor and then she sent me to the specialist. But since the first diagnosis and my first appointment (yesterday) it's been o ver a month. The idea of not starting medication and having to wait was making me anxious, and I was waiting for a call that didn't come every day, I took my phone everywhere I went, even if I went from the table in the living room to the sofa.

Yesterday I finally met my doctor. She was lovely, very kind and interested in my life. She asked me how I felt, if I needed a psychologist (which, for now, I've declined). She also answered all my questions and explained everything we were going to do. The nurses were also very nice. She has given me Dovato. It's great, because I wanted, if possible, to take something that could be taken with or without food and, also, it only has two ingredients. I may move in September to another EU-country, and she told me that, of course, we'll try to do as much as possible so that I can do it and have my medicine.

In my country you pick up your HIV meds in the hospital. The doctor told me to ask if I could be given pills for three months, but the nurse in the place where they give you the meds said that, since it was the first time, I could only get meds for a month. I completely understand it, but, of course, I want to go to the hospital as little as possible. Anyways, then I talked to a doctor who explained everything about the meds, side-effects, etc. And she decided to give me meds for two months. She said that, if the results were good, I could be given for three months, which is great! I loved the fact that they felt like they could trust me.

Yesterday I took my first Dovato pill. I haven't felt anything weird, but it's been less that 24 hour, so maybe it's too soon. I don't know.

This was a long post, but reading about people's experiences in this forum during that extremely long month helped me a lot, as well as videos on YouTube. So, if anyone is reading, thank you.

Desconectado PozChilean

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Re: Recently tested positive and first pill
« Respuesta #1 en: Mayo 21, 2021, 10:13:10 am »
Welcome!!!

It's very brave of you to have told your family and friends about testing positive, and I'm glad you're surrounded by people who support you.

I was the same as you: the waiting killed me. It was a good 3-4 weeks before I could finally take that first pill that changed my life.

I look forward to keep reading your posts.

Desconectado Tonny2

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Re: Recently tested positive and first pill
« Respuesta #2 en: Mayo 21, 2021, 01:05:24 pm »


                  ojo             hello there and welcome to the forum

my mantra has been, in order to defeat hiv is, DISCIPLINE in taking your med and a GOOD ATTITUDE, it seems to me that you already have the latter, congratulations!. well, at least that mantra has worked for me during the last 26 years since my dx, I hope it works for you...I am glad you have the support of your family and friends, in my case, just my family knows about my status, and it is because I was dying (PCP), otherwise, I am not sure if I had ever told them about my situation. Anyway, you are not alone, we are here for you during this difficult jouney, it will get better, especially taking just one pill a day, I envy you, I take 4x2 a day....please keep us posted and if remember that there are lots of people in other parts of the world that they do not have the same opportunities of free healthcare or meds as many of us....good luck

\\
« última modificación: Mayo 21, 2021, 01:09:18 pm por Tonny2 »

Desconectado npm9

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Re: Recently tested positive and first pill
« Respuesta #3 en: Mayo 22, 2021, 11:53:06 am »

It's very brave of you to have told your family and friends about testing positive, and I'm glad you're surrounded by people who support you.

Yes, I'm very lucky to have them. When I was diagnosed I knew that it wasn't something that I wanted to keep to myself, I knew that I would deal with it better if I had someone to talk to.


I look forward to keep reading your posts.

I don't know my viral load or my CD4 count yet, but I'll update this thread once I know. They'll tell me if the viral load has decreased and the CD4 have increased in 6 weeks.

Desconectado npm9

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Re: Recently tested positive and first pill
« Respuesta #4 en: Mayo 22, 2021, 12:01:36 pm »

                  ojo             hello there and welcome to the forum

my mantra has been, in order to defeat hiv is, DISCIPLINE in taking your med and a GOOD ATTITUDE, it seems to me that you already have the latter, congratulations!. well, at least that mantra has worked for me during the last 26 years since my dx


Yes, having a good attitude is crucial with any medical complications. Of course, some days I wake up with uncertainty, thinking about my future. Not that I fear about it but, of course, being young and still shaping my life thinking about the next few years with the medication was a bit scary. I decided that I will only think about the present and close future when it comes to my diagnosis (example, moving abroad in a few months and how to organise everything), but that's it. Of course, if my doctor recommends doing check ups to prevent other diseases I will, but the problems of the future are not here yet and I don't want to feel anxious about them.


it will get better, especially taking just one pill a day, I envy you, I take 4x2 a day....please keep us posted and if remember that there are lots of people in other parts of the world that they do not have the same opportunities of free healthcare or meds as many of us....good luck

\\

Yeah, that's what I told my doctor when she asked me how I was dealing with it. I can complain and feel angry about having received the diagnosis, but can I really complain when I just take one pill a day, 100% free and with guaranteed healthcare? There are so many people who've suffered and are suffering because they have no access to these pills, or the access is quite difficult, that being grateful about how lucky I am is the best I can do.

Again, thank you for reading and I'll update this thread soon.

Desconectado nethan1621

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Re: Recently tested positive and first pill
« Respuesta #5 en: Mayo 22, 2021, 12:15:33 pm »
One pill is lucky, lucky , lucky, lucky  :-* compared to some others… where i born in if i take medicine i have to enter to a clinic with Big name board “ STD clinic” but yet old formula tablets ,  and whole country knows same day and socially isolated forever… now where I live is a crime and if you want medicine, have to depart next day..  ;D and i fly more than 6000kms away to meet my dr and smuggled my medicine to where i live now  8) in a vitamin bottle, otherwise catch me and questioned… my dr rarely reply to an email , when i go for other preventive vaccine , nurses look at me very suspicious   8) But still now , strong enough to survive  8)  again you are lucky lucky lucky  ;)

Desconectado npm9

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Re: Recently tested positive and first pill
« Respuesta #6 en: Mayo 24, 2021, 04:39:17 pm »
sorry to hear that, nethan1261. Patients should be treated with dignity and access to healthcare be a right, not a privilege. Hopefully things get better. Big hugs, wherever you are

Desconectado PozChilean

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Re: Recently tested positive and first pill
« Respuesta #7 en: Mayo 25, 2021, 01:26:35 pm »
One pill is lucky, lucky , lucky, lucky  :-* compared to some others… where i born in if i take medicine i have to enter to a clinic with Big name board “ STD clinic” but yet old formula tablets ,  and whole country knows same day and socially isolated forever… now where I live is a crime and if you want medicine, have to depart next day..  ;D and i fly more than 6000kms away to meet my dr and smuggled my medicine to where i live now  8) in a vitamin bottle, otherwise catch me and questioned… my dr rarely reply to an email , when i go for other preventive vaccine , nurses look at me very suspicious   8) But still now , strong enough to survive  8)  again you are lucky lucky lucky  ;)
That's crazy! I'm so sorry you have to go through that.

Where are you?

Desconectado npm9

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Re: Recently tested positive and first pill
« Respuesta #8 en: Mayo 28, 2021, 11:00:01 am »
Hi everyone, if someone is reading this. Just wanted to give a little update, since it's been a week since I started taking my meds.

I was given Dovato and I have been taking it every day around the same hour at night. I was a bit scared of possible secondary effects, but I haven't felt anything, not even the most common ones. So I guess that's good.

The other day I had my first "have I taken my pill?" moment. I got home, I had a beer before that and after taking it, because of the alcohol, I didn't remember if I had actually taken it. But I counted the amount of pills in the bottle and, indeed, I had taken one. I guess that counting the pills that you have is a good way to know if you have forgotten or not, in case someone finds that helpful. I was scared of taking another pill, the box clearly says that you should only have one pill.

I had some more tests done at the hospital, but I still don't know my CD4 level or viral load. I guess they'll tell me in my next meeting (via phone) with the doctor, when they have new results after a few weeks of taking the meds and we can see the change.

That's all, really, but I'm extremely happy that there have been no secondary effects. My friends and family ask me how I'm doing, both psychologically and with the medication, and it feels great to have someone who is listening. However, I also like to know that there are people in this situation reading this out there, that I'm not alone. So, again, thank you.

Desconectado PozChilean

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Re: Recently tested positive and first pill
« Respuesta #9 en: Mayo 31, 2021, 04:09:02 pm »
Hi everyone, if someone is reading this. Just wanted to give a little update, since it's been a week since I started taking my meds.

I was given Dovato and I have been taking it every day around the same hour at night. I was a bit scared of possible secondary effects, but I haven't felt anything, not even the most common ones. So I guess that's good.

The other day I had my first "have I taken my pill?" moment. I got home, I had a beer before that and after taking it, because of the alcohol, I didn't remember if I had actually taken it. But I counted the amount of pills in the bottle and, indeed, I had taken one. I guess that counting the pills that you have is a good way to know if you have forgotten or not, in case someone finds that helpful. I was scared of taking another pill, the box clearly says that you should only have one pill.

I had some more tests done at the hospital, but I still don't know my CD4 level or viral load. I guess they'll tell me in my next meeting (via phone) with the doctor, when they have new results after a few weeks of taking the meds and we can see the change.

That's all, really, but I'm extremely happy that there have been no secondary effects. My friends and family ask me how I'm doing, both psychologically and with the medication, and it feels great to have someone who is listening. However, I also like to know that there are people in this situation reading this out there, that I'm not alone. So, again, thank you.
That's great news!

I keep track of my daily pill by writing down the date and time as soon as I swallow it.

Oh, and I've had no side effects in 5 years :)

Desconectado Tonny2

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Re: Recently tested positive and first pill
« Respuesta #10 en: Mayo 31, 2021, 08:36:19 pm »



          ojo.            @npm9…I’m glad you did not have, so far, no side effects…you are lucky to have your family and friends to support you during the beginning of this journey which it’s the most difficult, don’t forget that we also are here for you.

About missing doses or not being sure if you take your pill of not, get a medication box, even though it is just one pill a day, it will save you time and especially you won’t go crazy not knowing if you took it or not.

As soon as you get the results back from Dracula and see an UD level, you will feel more relax and you will be ready to take back control of your life, you will notice it…best of luck and please keep us posted.                                                       ojo

Desconectado npm9

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Re: Recently tested positive and first pill
« Respuesta #11 en: Junio 07, 2021, 12:02:11 pm »


About missing doses or not being sure if you take your pill of not, get a medication box, even though it is just one pill a day, it will save you time and especially you won’t go crazy not knowing if you took it or not.

 ojo

Hi!

Yes, a friend of mine gave me a medication box. I mostly use it for when I'm going out and I don't know when I'll be back home, so I can take a pill with me. I've also started putting the pill for the day inside the box, whether I'm going out or not, so that, if it's not inside, I know that I've swallowed it.

Thank you for the nice words

Desconectado npm9

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Re: Recently tested positive and first pill
« Respuesta #12 en: Junio 07, 2021, 12:04:43 pm »


I keep track of my daily pill by writing down the date and time as soon as I swallow it.

Oh, and I've had no side effects in 5 years :)

Hi!

I've thought about writing it down but, being honest, making the process of taking the pill fast helps me a lot (ie. getting a glass of water and swallowing the pill). It makes it feel like it's not a "chore". I use a small medication box to know whether I've taking it or not. So far it's working, so I'll guess I'll stick to that. And happy to hear that you've had no side effects! It was one of the things that scared me the most, but I haven't felt anything weird, so that's great.

 


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