Previously, on Lost

[Dalinar]

2020 was the worst year I've faced so far. I never expected it, when I popped the champagne on New Years Eve the kind of year 2020 would turn out to be.

During the year I started noticing my skin wasn't looking that great, I started having a few rashes that i would apply a cream to, and they would get better. I went to see a doctor when it escalated, and I went there a few times over a few months, everytime being prescribed a different cream, that did little to improve the situation. I started developing a fever and having unexpected shivers. Started waking up several times during the night with my sheets completely soaked in sweat. I would wake up 10 times during the night, it was super unconfortable and a bit maddening. Having to focus on work after those nights was a challenge. Last time I saw that doctor the rash had spread and become a lot worse, and I was finally referred to a hospital dermatology department. I received some very strong medication that stopped the fever and gave a lot of blood for analysis.

A few years ago, a friend of mine told me he was HIV+. This happened when we were walking from gay club to gay club, drunk on music, wine and emotions. My first reaction was to hug him and tell him he would be okay. That things have changed for the better in the last few years and that with proper treatment it was no longer a life sentence. And that I would be there for him, that he was not alone. We briefly talked about it a few times after that, but it disappeared from our conversations as time went on.

A few days after I visited the dermatologist, I received a phone call telling me they detected HIV in my blood.

My mind went blank and my first though was 'my life is over'. I tried to compartmentalize it as much as possible, but it was impossibly difficult. It is very different when it is happening to you. We know the theory, we know the available treatments, but it still feels like the whole world just shattered.

A few days after that I saw a doctor to discuss my HIV situation and treatment. Gave more blood for more HIV specific tests, and started to look in more detail into the treatment options, and how to carry on with my life. I wanted to start treatment as soon as possible, but had to wait for the results.

A few days later I received a call from the doctor saying that I would have to be admitted to the hospital because they detected a few dangerous situations that required urgent treatment. I had read a lot about viral loads and CD4 counts, but I was not prepared to hear that my viral load was sky-high and my CD4 count was 30.

Not only was I HIV+, but I was living with it most likely for a few years. I was finally starting to feel better about my situation, and the CD4 count, at 30, completely broke my spirit. I had recently started hearing a ringing sound, a bit like a flatline sound from time to time. It became more frequent, another constant reminder of what I was going through.

I had told no one this was going on, and I felt there was no one I could talk to about this. I have a few very good friends, and I know that if I told them they would be supportive, but I wasn't ready to see how they would look at me once they knew. I was also not ready to lose control of this story. The only secret I can control is the one I haven't told anyone about. I barely had enough time to internalize what was going on, it just felt having other people interfering with it would only make things worse.

I was admitted to the hospital due to an opportunistc infection, that needed to be treated as soon as possible. While I was there a series of tests was done, a few very unpleaseant, and a second infection was found. It was also one of the peaks of Covid, so people around me had to wear full protective gear, at least until it was confirmed I didn't have corona as well. (I didn't)

I just accepted the process. There was nothing I could do except go through it and hope for the best. I was in a country where I did not master the local language and I was a bit afraid of being admitted to a hospital, since I had heard a few not so great things about healthcare here. But the conditions at the hospital were very good and the staff very friendly. I could tell the nurses were all exausted with the amount of new Covid patients, but they still had a smile and a lot of kindness when interacting with me. I would also always greet them with a smile or a stupid joke.

I wanted to start treating the HIV infection as soon as possible, but I had to wait until the oportunistic infections were treated, or received the initial treament. Knowing my CD4 count was so low, I could almost hear that number dropping day by day, as I heard the ringing in my ears.

I asked several times for the hospital staff to not talk about my diagnosis to anyone who visited me. It was nerve wrecking having a friend there and seeing a nurse enter to give me medication. I was afraid they might slip up and mention HIV while I had a visitor. That never happened.

During that time I found this forum, and read a few posts. It was conforting to know I was not alone, that other people went through something similar and are living well with their status. I also started watching a lot of youtube videos of people living with HIV, hearing their perspectives, and that HIV is just a small component that does not define who they are. I wanted to post something here, but I was just not ready.

The truth is, I felt a lot of shame with the whole situation and I was very surprised when everyone treated the issue in a very non-judgmental manner. And that helped quiet down the  inner voices that kept telling me that I was worthless, that I should be ashamed, that I deserved it, that I was a terrible person. I was sometimes my worst critic.

I found out about U=U, and that helped to see a normal life is actually possible.

The days went on, very repetitive, one after the other. And I started to connect more with the staff. The lunch lady would sometimes sneak an extra chocolate bar in the evening or just chat with me from time to time, there was the night nurse that would wake me up at 5 in the morning to take some more blood while making some jokes, and a lot of other interesting, funny and peculiar people I met there. I started feeling better as time went on.

A few weeks later I was finally discharged, and started taking antiretroviral medication (Triumeq, finally!).

I went back to my normal routine, and work. Stopped being so hard on myself and blaming me for what is happening. It is what it is. I stuck with my medication schedule and had a few follow up appointments.

This month I was finally able to see and discuss my latest results. Going from a CD4 count of 30, I wished it would go as high as possible, but I also knew it can take a long time.

My latest results give a viral load count of 50, and a CD4 count of 250. This was a huge surprise as I didn't expect to bounce back above 200 in this short time. I certainly wished for it many times, but did not expect it. So things are looking better, and hopefully it will all be less traumatic from now on.

I feel well, although my skin will still need more time to properly heal. I still dream about a beachy summer, will see how it goes. The ringing in my ears has almost disappeared, a fadding reminder of those weeks.

Sorry for the long post. And thanks for being there.

[Almost2late]

Hi Dalinar, and sorry for your recent diagnosis. Your story touched me and I can relate.. I also was diagnosed with low cd4's. It can be quite a traumatizing experience but you seem to be strong minded in handling it. It took me almost 2 years to get over 200 and your 50 vl is pretty much undetectable. I'm also on triumeq and I  haven't seen a blip in the past 3 yrs.

The skin issues and night sweats were also a sign for me, but wasn't diagnosed until pneumonia in the ER. All water under the bridge now bc things have improved.

Thank you for sharing your story, and wishing you continued success with your meds, health and life.

[ajay1980]

Thank you for sharing your story! We are all here to support you as most of us are going through it! That is great to hear your CD4 bounced back up and your VL is low. It's still a day by day process for me! Please continue to share your updates and I hope the rashes start to heal quicker! You got this!!