Intro - Low CD4

[racingagainstme]

I'm a final year university student. Initially signed up for a visit to my primary care due to weight loss which was about a 2 month long wait. Over that period my condition worsened significantly: I got down to 122 lbs (6'0"), was coughing, having extreme night sweats, and intense chills preceding fevers up to 103F daily. It took me some time to understand what I was feeling was actually a fever due to the chills.

Went to the doc and got a call a week later asking me in person for my test results - which I found worrying. My mind immediately went to the 'worst' thing I was being tested for - HIV. I hadn't even gone in considering any STD as a possibility and did the full panel upon my docs suggestion. My initial assumption was hypothyroidism, anemia, low b12, etc.

Googling symptoms lowered my morale significantly as everything matched up. I spent the next X hours trying to convince myself that the chances are so low, it won't be me, blah blah. But no matter what I told myself, I think deep down I knew I got it. The next day doc told me my viral load was 520,000.

Next thing I did was go home to my parents' place and tell them. In an alternate dimension where I was on my own insurance and fully independent I probably wouldn't have done the same. Surprisingly, they were very supportive. They are immigrants and didn't live through the HIV scare (for them it was more like a HIV cover-up) so I think that had something to do with it. Looking back now I don't know if I could have done this without them. pros and cons.

I got my CD4 a week later, <20. Specifically <20, which is interesting considering I've read people getting results in the single digits. Sub-par test I suppose. This was pretty devastating. The time between the dx and ID visit was tough physically, pretty much completely bed ridden.

First ID visit was a few days after the CD4 news. Got a chest x-ray due to the cough and more blood sucked. I got a glimpse of the x-ray and it was obviously abnormal, multiple cloudy blobs or 'ground glass opacities' as I now know. Of course, the tech refused to make any comments on it. Not a real complaint - there is a good reason for it.

ID doc calls a couple days later and recommends I come in as an inpatient. He wants to get a CAT scan and bronchoscopy and it will happen much quicker as an inpatient rather than out. I was a bit hesitant to go because I had never laid in a hospital before, but my parents convinced/coerced me by saying "let's just get the cat scan done today'. Given my condition, of course the hospital staff weren't going to release me until they were done with me. Looking back now, I obviously wasn't thinking straight, and not nearly as educated on my risk as I am now - luckily cooler heads (literally) prevailed. They plugged IV in both arms akimbo style, stabbed me 5 more times. Antibiotic pump engaged, and off to bed.

Next day I was visited by the pneumologist who told me they were very confident I had PCP pneumonia, but still wanted to do the bronchoscopy for confirmation. Not an interesting procedure, I don't remember anything after the word fentanyl was mentioned.

Next day the doctor cleared me to go home. It was obvious the antibiotics were doing their job very well. My heart rate was back down, much less fever, much less coughing. The whole process was draining emotionally, they barely let me sleep, and I got stabbed upwards of 20 times. All I wanted to do was sleep.

The next three weeks were a different battle. I dropped the coughing and fever, but picked up Bactrim. I was taking 6 Bactrim a day (600mg i think). It caused bad headaches, occasional nausea and stomach issues. I became good friends with Advil and Tylenol. The Bactrim side effects kept worsening, reached an unbearable peak, and then sharply stopped completely. I didn't complain.

I went into my next ID visit expecting to get on ART, but it turned out there was no genotype taken. Essentially there was a bit of a mixup in which it was assumed a genotype test was ordered by my primary care so none was ordered by the hospital. I spent another week and a half waiting before the doc decided the test was taking too long and prescribed me Biktarvy. It was exactly a month from getting the dx to getting on ART.

It's been 3 weeks since then. No real side effects, some fatigue for the first little which has faded. I've gained about 15lbs. But a few days ago I started wearing my garmin watch again, which tracks heart rate. I've noticed my heart rate is high, generally 90-100 awake (little to no physical activity) and no less than 80 at night. I'm also generally a little bit sore. I'm beginning to worry about lactic acidosis. I generally feel fine, and I should be in for a check in within a week so I'm inclined to believe it's not worth a trip to the ER.

I've been lurking here for a while now, reading many stories really makes me feel like I dodged a bullet. Probably many more than one. I'm so grateful for life. My clairvoyant doctor suggesting the HIV test probably saved my life, it would have taken me much longer to get to the ER otherwise. My parents for their unconditional support. My PCP was mild - I didn't need oxygen or steroids (which I'm allergic to).  My secure insurance situation. I wish everyone got away as easy as me.

Going into this next ID visit I hope my CD4 is >20, and the VL down significantly. I know I can't expect much starting from such numbers, but if not for me, for my parents who are terrified of letting me go anywhere. This is currently an annoyance, I’ve been holed up at my parents place since the dx and the longer I am away makes explanation to my friends more difficult (I don’t plan on telling anyone else in the foreseeable future. I also just want to get back to my normal routine.

[leatherman]

first off, the normal "welcome to being here but certainly understand that you wish you weren't here". Then there's the congratulations for already getting onto meds. no matter what, what blood results, what counts, whatever, taking meds everyday is the KEY to living with HIV.

Sounds like your recovery is going pretty well. I've been there myself, hospitalized with PCP/AIDS. Although that was 26 yrs ago, I remember recovery taking a long while. Just remember that when things are tough. With the counts you posted you were most likely quite sick for some time without even knowing it. Well, not knowing until your immune system was pretty destroyed. So it'll take a while for you to completely recover. But hang in there because you will recover - just make sure to stick to the meds! 

[daveR]

Welcome to the forum, although saying that always strikes me of being strange. Well spotted by your Dr. You seem to have accepted the situation as it is, which is the best thing to do. Just stick to the meds, Biktarvy I believe is an excellent choice, took it my self for a few months with no real side effects. I should imagine in a few months you will be undetectable with a rising CD4 count, and feeling much better.

Take care
Dave

[Jim Allen]

Hiya,

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

These things take time but I'm glad to hear that you have started treatment, gained some weight back and are on the road to feeling better.    I'm not sure if you are still taking Bactrim, I found it was rough as well, but at least it's only something to take until your CD4s improve and the ART suppresses the VL.

Heart rate sounds normal to me, prehaps it will get somewhat lower once you have settled in, are feeling better and are less focused on things, but talk to your doctor if you have concerns.

Anyhow, take it easy.

[Tonny2]

          ojo.       @racing, reading your story is like if I were reading my thread. Kiss if weight, that much weight, is a sign of PCP, I, like you, ended up weighing 120, same height, I looked sick and never realized it until I was in the ER, anyway, nowadays meds are great, you will recover if you take your med as prescribed and keep a good attitude. I’m glad your parents are supportive…I hope that people who read us thinking twice to go and get tested for hiv, go and do it because your story is the result of not doing it…good luck and keep us posted

[Bucklandbury]

Buddy, it's scary.

I had AIDS, but I had only dropped to 60 CD4. My VL then was 1.5M per mL of blood.

Give it time. It's hard not to freak out... esp. considering where we were 25-30 years ago.

My heart rate was way up too... It has long since dropped after 13 mos. on Biktarvy... My watch charted it all. I had no idea I was consistently tachycardiac.

Hit me up if you want to talk. I had thrush but no PCP, so I lucked out. (The neuropathy I do still have.)



~ Jesse