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Author Topic: New DX with V Low CD4 Count  (Read 10632 times)

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Offline Trac2

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Re: New DX with V Low CD4 Count
« Reply #50 on: January 07, 2019, 08:54:07 am »
Good to hear Loa :)

Keep us posted

Offline Loa111

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  • Posts: 157
Re: New DX with V Low CD4 Count
« Reply #51 on: January 09, 2019, 02:59:28 pm »
Had my ID Doc appointment today.

The Big News is that my CD4 has risen up to 85 (based on early December bloods). This is huge for me, since I started at 22, with minimal increases for months & months.
I'm still Undetectable <40 copies which is great.

Also today, I got my first jab of three for Hep B vaccination. My blood did not show vaccination for Hep B so the doc had to wait until my CD4 increased enough to make vaccination workable. Also I got the 1st of 2 jabs for Pneumonia vaccination.

I'm back next month for by follow up jabs. The clinic has a new dedicated hiv nurse for this, which will make blood draws more efficient, e,g. going forward they are going to do blood draws 2 weeks in advance of my next ID Doc appointment which will be in 3 months time. Whilst to date, I'd see the doc, then they'd send me down to the blood dept, and it would be the following month before I got the results. So now it will be bloods first.

Got a stock up of my treatment meds, and also the antibiotic which I still have to take daily, and a refill of Folate pills to build up my folic acid reserves which last month, we discovered were totally depleted.

Since I still have been having skin issues, i.e. dry patches of skin, red blotches, and acne like pimples which come and go, I am seeing the Determatoligist this Friday which my ID Doc set up. Hoping to get a solution to these small but irritating skins issues. Also next week, following on from the initial pneumonia I had last year, which landed me in this new situation, I've got a final breathing capacity test to do.

Overall, after a really challenging time last year, with my Dx, my OIs, meds changes, feeling depressed sometimes, etc. This time things are good. I'm back exercising, I feel good. The nagging lethargic last of energy feeling has gone (hope it stays gone lol!  ;D ).

Also ID Doc today mentioned casually about a study in Germany, where hiv positive people were outliving neg people by up to 5 years due to the frequent bloods & medical check, and also due to many embracing a healthier lifestyle since Dx.

Doc told me it is important to do cardio, and to lift weights, as this will help combat potential heart, or bone problems which could surface in later life, with some hiv pos people being more prone to these issues. So off to the gym I go!  8)

Offline TexasDragon

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Re: New DX with V Low CD4 Count
« Reply #52 on: January 09, 2019, 03:09:13 pm »

“Stick to the plan, die an old man!”

And I got Hep A and B at the same time - made my shoulder sore as hell!
Exposure 10-04-2018
Dx 11-08-2018
1st Appt 11-15-2018
11-15-2018 Blood Draw - CD4 468 11% VL 316,000
2nd Appt 12-04-2018 - Hep A and B Vaccines
Start of Biktarvy 12-14-2018
3rd Appt 01-15-2019 - All Good - 2nd Hep B Vaccine
01-16-2019 Blood Draw - CD4 934 28% VL 98
4th Appt 04-16-2019 - All Good - Final Hep B Vaccine
04-16-2019 Blood Draw - CD4 873 30% VL <20

Offline Trac2

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Re: New DX with V Low CD4 Count
« Reply #53 on: January 09, 2019, 04:13:26 pm »
Definitely heading in the right direction Loa11.  I'm glad you are doing so well!!

Reading your post reminded me to ask my ID this Friday about getting my pneumonia vaccination.  At my initial visit he mentioned it, but said we'd have to wait until my first labs came back.  I just added to my Q@A list (just in case he forgets).

I'd be curious to hear what your skin doctor has to say as I'm experiencing much the same issues.  I thought it was just anxiety.... nothing awful and maybe just being overly sensitive right now.

Offline CaveyUK

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Re: New DX with V Low CD4 Count
« Reply #54 on: January 09, 2019, 06:42:55 pm »
Brilliant update Loa. It always amazes me how regardless of the starting point, and some twists and turns along the way, all these stories fit a common trajectory which generally end up with a happy ending (or in some cases where babies, marriages, houses come along....a Hollywood ending :)

Thats testament to the great choice of meds we have available for many of us. Not a day goes by without me thinking about how lucky we are to live in this particular era and how much we owe to all the people before us who campaigned for better medications and services, many of whom are no longer with us and many who had to endure some pretty horrible way-points med-wise to get to where we are and the tireless work of scientists, researchers and doctors.

Anyway, glad to hear the energy is back, the CD4 count has quadrupled since diagnosis and you are still UD. As I said earlier in the thread, it won't be long before you realise that compared to the early days, life will become comfortingly mundane, HIV-wise!

Keep us posted
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Offline Loa111

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  • Posts: 157
Re: New DX with V Low CD4 Count
« Reply #55 on: January 11, 2019, 12:04:09 pm »
This morning I had the Dermatologist appointment with my ID doc set up, to investigate the dry skin, mild acne, and also to look at the many moles I have as apparently us poz people are more prone to skin cancer, also since I have I'm fair skinned and of Celtic race, and there's been a meneloma in the family, so the risk is higher for me.

@Trac2 since you asked re similar problems you have with dry skin... there was no real conclusion today regarding the dry skin on my head & face. Mine is not itchy nor sore, so doctors did not think there is anything dangerous there, and consensus so far is that it is my immune system getting stronger again from my advanced Dx. They did not give me any creams or anything. In fact, I forgot to ask for addition advice on it, obviously if there was something more serious they would have given me something.

They had a good look at my moles, and thank God, they did not see anything that looked like it could be abnormal or dangerous. They did advise me to keep an eye on them myself, and if I notice any changes to get on to them immediately.

I do have a small patch of hard dry skin on my head, like you see on old mens heads, and doc thinks it is from sun damage from the 10 years i lived in Asia. Doc gave it that cold nigtrogen spray to burn it off, so let's see does it fall off I hope over the next few days.

They advised me to come back in 12 months time, and if anything worrying appears on moles to contact them immediately or via my ID doc. It's good they are all in the same hospital.

In my country the public (free) medical service has terrible waiting lists, one could be waiting up to 4 years for non-urgent procedures. Luckily our hiv ID doc & treatment is free and there is no waiting lists, it's really good. So I am noticing at little system "hack" in that having advanced hiv seems to get me bumped up to the top of the waiting list. They told me my Dermitologist appointment waiting list is up to 2 years, however I got an appointment in a couple of months! lol  :)

Next week I am back to the hospital for a Breathing Test, as all this hiv Dx came about for when I had a real bad cough which would not go away, repeat chest infections for months, which turned into Pneumonia, landing me in hospital, and of course then they found out the real cause. Point is, initially my own local doctor thought I had Asthma, and sent me to a specialist to investigate Asthma. So they are bringing me back to check if I have Asthma or not. I am 99.99% sure I do not have Asthma, but since it is on the books, and the case is open, why not just go along and check anyway, and hopefully get the chapter closed on that part of my saga.
« Last Edit: January 11, 2019, 12:13:20 pm by Loa111 »

Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #56 on: January 21, 2019, 05:51:06 am »
Had to go for a Breath Test & consultant last week with the Pulmonary Doctor. This is a follow up on the Pneumonia I had last year, which of course lead to the discovery of my Dx.

So did several different tests, blowing into machines etc. Then got to see the Pulmonary Doctor. Apparently my breathing test results indicate that I have "mild asthma". I was disappointed to hear this, as I've been jogging a lot this year n doing 5ks in 30 mins & more which is decent, I certainly do not feel like I have "mild asthma"

The doc was quite insistent, that I get inhalers and take a puff of one each morning & each evening, Beclazone or similar it is called. I told him I did not feel the need for an inhaler as i stopped using them several months back when I was given the final all clear from Pneumonia, and that I've been running/gym with no coughing or wheezing. Anyway he again insisted I get the inhalers, as "you need them for inflammation".  To keep the peace, I went and got them, and take a puff each morning.

Bit of a piss off this, being saddled with medication in the form of inhalers. Since my CD4 has started to rise, I am looking forward to getting off the antibiotics this year, and cutting  medication (I hope) to just my ART daily pills.

On a more positive note, my next ID Doc appointment is in May which is a relief as I'd been going monthly or often bi-monthly. Though I've got to go see the new iD nurse to get follow up hep n pnuenomia shots, and a blood draw before May.
Seems like 2019, fingers crossed, will allow me to settle into a more stable, 4 times a year to ID doc routine.

« Last Edit: January 21, 2019, 06:21:34 am by Loa111 »

Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #57 on: May 08, 2019, 03:59:55 pm »
It's been January since I last posted an update here. I want to keep this thread going for a while longer as I hope it can be of value to new DX people especially those who find out they've a very advanced DX case, like I have.

So Happy Birthday!!!  ;D It's just over a year since I got DX'ed, and as you can read back in the thread that came about because I was sick for months, bad colds, chest infections that never went away for maybe 6 months, thrush, then noticeable weight loss, which ended up with me in hospital for 5 days end of last April with Pneumonia. 
Came home from hospital, then the next day I got a call to go see this other doctor to "discuss some blood tests" of course I had 5 days to wait for my first appointment, 5 nerve wrecking days, obviously I'd googled the doc, but tried to convince myself it was some other medical problem. Went to the appointment and got the "good news" started treatment 3 weeks later with a CD4 of only 22.

If you're a newbie and interested, you can read through my posts, updates, med changes and up/down mindset all through 2018.

So roll on to today. I was at the ID Doc for my appointment. After nearly a year on treatment, my Cd4 is now 137  ;D which I am delighted to hear. I am Undetectable still <40 copies and have been UD consistently since approx last summer. Doc is happy with my CD4 increase to 137, and tells me that everything is going very well treatment wise. I still have to take the antibiotic for the next several months, as doc wants to see a bit more of an increase that remains consistent before he takes me off the antibiotic. I cannot wait to get off it. I am back to see ID Doc again in September so I am now on 4 month appointment cycle which is great, as last year some months I was going every 2 weeks! Also got my final 3rd Hep B vaccination today too.

My weight has come back as I was getting skinny looking last year, lost at least 10-12 kilos, and had skinny face look which I think is particular to this illness. Now I am up around 16 kilos, lol so I have to scale back maybe 4 kilos now.

My energy levels have returned to normal levels, or close enough to normal as I can remember them. I do everything I used to do before I got sick, go to the gym, do fitness, weight train. Physically I feel fairly good. I still can get a bit noticeable tired if I push the gym training a bit too much, however I am hoping this will improve in time.

Mentally I am doing fine. I pop my pills in the morning, takes me 60 seconds and that's it. I try not to think about HIV, and I do get blocks of several hours when I do forget all about it which is great. Sometimes, the thought of hiv does come back to haunt me a little, and play mind tricks, but hey it's only been 12 months, so I am sure and hoping that will fade will as more time and years pass.

So yeah pretty much back to normal living.

I've told only 2 people, and i am going to keep it that way. Especially now that my health has stablised, and returned to near normal, I do not look sick now, I do not have bi-weekly doctor visits to explain. So really there is no need to tell anyway, to discuss my condition, at this stage there's absolute nothing to be gained by that, at least noting positive. 

I will go at some point to a hiv support group that Jim on here recommend to me. It would be nice to meet a few more people with my condition, just for the mental feel good "strength in numbers" effect.

I've received great help, support, and advice from the people on this forum, thank you everyone! I am so grateful I came on here. Newbies please do the same, it is worth it.

Ok, so I've still a a couple of bends on the track to get around regarding the 137 CD4 increasing to a level which will allow me off the crappy antibiotics. So I'll post back about that in September.

Also the ID Doc told me today that with my VL less than <40 copies, he said there is still a bit of improvement due there, and thinks several more months of treatment might get my VL down to <20, so Doc is hoping to see a bit of small improvement in the VL...of course I welcome that.

I did ask him would I ever get to the change where I could go from a 3 drug combo to a 2 drug combo, and he said "Well maybe, though it might be a couple of years, maybe" and was non-committal. Bu they that's fine, no big deal either way.

In the meantime, I'll be hanging out on the forum to reply to any new newbies, and of course to keep up with the news on research and potential new treatments.


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