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Author Topic: 14 months since diagnosis.  (Read 2053 times)

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Offline Shazam9cd4

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14 months since diagnosis.
« on: July 01, 2023, 01:29:17 pm »

I guess i am now someone who can post in this section “living with Aids”.

Its been just over a year since i tested positive.  What a long strange trip its been!. 

I only learned of my condition because  i checked myself into the hospital for a few days for a series of diagnostic tests.  A few months prior -  I had told my GP that i either want her to tell me i had 1) a serious illness or 2) was a hypochondriac.  Frankly i was thinking cancer.

After a wide range of tests - Her conclusion - i was a hypochondriac. 

Shortly after that diagnosis i developed a mild cough that over months progressed.  Then it went away, then slowly again, over a couple months,  it grew again from-a scratchy throat to a bothersome but irregular cough.  After chest xrays, CT scans,  endoscopes,  CBCs, 4 doctors said i had very typical post nasal drip. 

Then, in a relatively short period of time, I started to feel breathless at the slightest exercise. 

Thought then i had a heart problem (The main blood anomaly was very high ferritin levels)

I felt the general consensus of post nasal drip wasnt quite right so i had myself checked in for a series of tests to be performed over several days: angiogram, colonoscopy,  prostrate MRI,  upper/lower abdomen ultrasound,  bronchoscope.  I just wanted to get to the bottom of things and figure out why i wasnt feeling quite right.

The doc who coordinated all the procedures had asked preciously me if i had been tested for HIV. We discussed it but i didnt think that was a possibility. 

If there is anything i could redo it would have been to test earlier.  My first,  and only test was in 2005 as part of a standard checkup. Perhaps had i known more about HIV,  its survivability, and importance of starting ART as soon as possible i would have tested 10years before.  Such an important lesson for everyone)

Back to my self diagnostic checkup - Frankly i was feeling quite fine when i checked myself in and no one was particularly concerned.

On the second day i was wheeled back from my bronchoscope and  almost  immediately went into respiratory failure.  Docs told me later they didnt think i was going to make it. Spent the next few days in ICU then about a month on drips, wrote out my will with my wife but fortunately before that could get executed ended up recovering enough to leave the hospital using a walker.

On that second day of tests i was diagnosed with Sepsis and  severe pneumonia.
 tested positive with a CD4 count of 9.

That was a very dramatic event - very hard get My head around and somehow find the strength to keep moving forward. 

Having to tell my wife.  The anticipation of her results.  Learning about this disease. Learning to walk again, The new  Insurance problem. The new finance situation and outlook.  Learning to take each day as it came - one step at a time! .

I was fortunate,  i suppose l, that i had no other major illness while my CD counts were so low (and continue to be).  Rashes on my face, arms and back, and weird  transient skin lesions were the worst of my afflictions - which slowly resolved over the months my CD4 counts rose.

Bug bites,  mosquito bites continue to be  exaggerated and drive me nuts.  But my wife now has company and more sympathy because she has always complained of mosquitos when they would never impact me - not even raise a welt.

A good nights sleep  has been a constant struggle but now im getting that under control -  the quality of sleep is improving.

Absolutely out of control blood profiles a year ago are now almost all within normal ranges. 

Still lingering issues: 

- Kidney function decreased but nevertheless stable. Need to watch.
- Weight higher than it ever has been and hard to loose with a voracious appetitive and a secret cookie recipe my neighbours crave for) But now stable and i work out through a variety of sport everyday. 
- In general health is ok. I was taking blood pressure pills before the hospital stay,  lost so much weight, and reduced Bp to low levels.  BP is still low and i remain off BP pills.
- cD 4 count rising so slowly after all this time (now 156 after 14 months) but the positive impact of rising CD is Noticeable even if not yet above 200.
- It took 11 months to become undetectable (March) and on my 3 month check up last week its now detectable again (49)
- Still on co-trimox.  Single dose.  Dropping from two to one seemed to help with the skin ailments. Docs still want me on that single dose until CD4 recovers.
- Feel like im under constant inflammatory stress And worry about the impact to my brain, heart snd general health.  But it is getting better as stress is relieved through living as full a life as possible and learning to live with the new reality.  I believe im my own worst enemy and most of the stress is in the world of my own thoughts
- Have had 2 minor Bouts of covid but wouldnt want to have another without paxlovid.
- A bit Fearful of travel which i need to do for work across many 2nd world countries.  Long flights and big timezone changes i find challenging..

Thats  a lot of water under the bridge over the last year.

Key observations/realisation’s since testing pos:

- the  himan body and its immune system is truly amazing.
-  HIV  is not a death sentence….as i had  previously believed. 
- HIV is not just a “gay” disease.  It is a disease that can affect anyone.
- If i had a morbid choice between the many illnesses that have effected others ive known over the past year - and HIV,  id choose HIV.
- For me the hardest part is without a doubt mental.  The stigma.  The chronic worry.  The inability to speak openly about your condition to people. The anxiety over  any unusual symptom and the hypersensitivty to my health.
- The Meds work!
- The support of my wife,  my specialist, and this societies health care support system with caring doctors is invaluable.  Its so important i simply dont know how i would do without it.  They have been always so much more positive about my prospects than i have been.
- The value of this site in the recovery and dealing process is HUGE.

What Do I  look forward to:
- Every day & The rest of my life!
- The next hike i take in the mountains
- The next family gathering
- The next good bottle of wine
- The next good meal with friend
- My CD4 counts hitting that 200 mark+
- Getting off co trimixazole.
- My next UD test result
- Meeting someone who has the same condition -  face to face - for a long conversation!
- Moving to a longer acting injectable - or better yet a cure. 

Latest test results:

CD4: 158
cD4%: 21.2
CD4/CD8: 1.14
Lymphocyte % 17.9
Creatinine: 114
eGFR: 59
On Triumeq.

Offline numbersguy82

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Re: 14 months since diagnosis.
« Reply #1 on: July 04, 2023, 10:59:27 am »
Wow thank you for sharing your incredible journey with us! What an amazing recovery you’ve made. I wish you continued health and upward progress! Take care
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Offline Jim Allen

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Re: 14 months since diagnosis.
« Reply #2 on: July 04, 2023, 11:58:54 am »
It took 11 months to become undetectable (March) and on my 3 month check up last week its now detectable again (49)

49 is perfect and fully suppressed (UD) both in terms of the treatment goal and passing it on sexually. Job done! The fact the lab can detect lower than is needed means nothing. The few copies that you will see pop-up from time to time as you are just starting out is most likely nothing but defective copies being released from the viral reservoir and incorrectly counted.

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Offline leatherman

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Re: 14 months since diagnosis.
« Reply #3 on: July 05, 2023, 04:21:04 pm »
- For me the hardest part is without a doubt mental.  The stigma.  The chronic worry.  The inability to speak openly about your condition to people. The anxiety over  any unusual symptom and the hypersensitivty to my health.

well, two of those seem the same. "Chronic worry" and "anxiety" about your health and what having HIV means to your future are pretty common for people who are more recently diagnosed. If you stay adherent to the daily HIV meds, your health and your longevity will be as good as YOU keep it. Like so many other things, it's TIME that will make all this better for you mentally. While it sucks to not be comfortable yet, in time, you'll see that things will get better and your worry really will ease.

Now to the other two things, stigma and speaking openly, let me suggest an alternative view. Why would you speak about HIV? No one wants to hear about someone's gout, blood pressure or genital warts. LOL Why would your HIV status be of any interest to anyone? Of course, talking about it, you could bore someone LOL, or freak them out if they were like you and had never really thought about HIV before.

As to stigma, personally, and this is just my opinion, I think most of it is self-induced. When I don't talk to others about HIV, no one has ever stigmatized me in 40 years. When I have spoken about it (and boy howdy, have I done that a lot!!! As an advocate, peer support, educational speaker I have spoken about my status a lot.) I don't let people stigmatize me. Most people are ignorant about HIV (most people are ignorant about all sorts of diseases they don't have), so I find if you know how hiv is transmitted, or maybe how it's NOT transmitted, you can usually nip any discrimination or discriminatory remarks in the bud.

Of course, you have to chose your battles. Living in mildly rural SC, I don't go around announcing that I'm gay or HIV+ in most situations. But really, why would I? LOL But mostly because not being certain of my audience and being aware of my surroundings, sometimes announcing these thing could be an issue. It's good to pick and chose when, where, and who to disclose to.

Then you have to have some confidence and some knowledge. I don't know what people think about me after they leave and go to their homes; but I do know that I pleasantly explained HIV prevention and treatment to allay their fears and hope they think about their own status and prevention while not bigotedly bad-mouthing me later. If you don't have that kind of knowledge and confidence in your status and treatment then it's probably better to not disclose until later in your life. This isn't like 1992 when I had to explain to my parents that I had aids and was probably going to die. This is 2023 when you have the rest of of life to disclose to people when you're ready.

As far as talking about your status because you need information and moral support, well IRL there are slim picking. So that's part of what these forums are for.  ;) :D
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Shazam9cd4

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Re: 14 months since diagnosis.
« Reply #4 on: July 07, 2023, 11:22:02 am »
Always enjoy hearing from you Jim and Leatherman. Helps ground me!  Trims the sails,  and keeps me focused on what's important!


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