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Author Topic: Diagnosed this year and learning  (Read 2432 times)

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Offline Shazam9cd4

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Diagnosed this year and learning
« on: November 10, 2022, 01:45:24 am »
Im newly diagnosed this year.  Quite a shock for a low risk family man who just turned 60. 

In May i checked into a hospital to run a set of diagnostics to find out why i was having some lingering symptoms that culminated in shortness of breath the week before and started with on an intermittent  mild to moderate  cough ~ 6 months before. 

The cough produced little in the way of meaningful diagnostics.  Nothing on x-ray,  nothing on CT,  nothing on endoscope, nothing cultured in sputum.  Nothing on stethoscope.  Diagnosed by 4 separate doctors over the 6 months as post nasal drip.  It went away after levoxocin, then took 3 months of slow development to return.  The only worrying diagnostic was very high ferritin levels but docs weren’t as concerned about this as i was.   But basically the climbing ferritin and breathlessness triggered me to take more immediate action.

The diagnostics i wanted covered were CT scans,  MRI of prostrate,  colonoscopy,  angiogram,  bronchospy,  ultrasounds of upper and lower abdomen.  I just wanted to get to the bottom of the lingering issue and rule out anything i could.  I was prepared for everything  - cancer,  cardiac issues,  autoimmune etc

On my second day, During the bronchospy,  i started Having respiratory difficulties  and by afternoon was in full respiratory failure and admitted to ICU with severe pneumonia and sepsis.    Causative agent was PCP.   I was then Diagnosed positive. 

What was intended to be a couple days of diagnostics for PND turned into a month in the hospital,  and what i thought then was  a death sentence.   Docs told me later they werent sure I would  survive. 

Remarkably i handled the news quite well (at the time) which may account for the efficacy of the anti depressants,  sleeping pills,  and anti-anxiety pills i was put on. 

After all -  what can you do except take the news and deal with it the best Way one can.  Im fairly  practical and ive had a great life to this stage so lets appreciate what ive had and see whats next.

Of course the pain mainly came from thinking about my young kids,  and  my wife.  How do i tell them?  How long wil they have me in their lives?

And such questions facing me  -  how did i get this, does my wife have it,  and will I survive Long enough to see my child graduate from secondary school?

Discussing with my wife was the easy part and Fortunately she tested negative which was a gigantic relief.  But left me with the question   how did i possibly contract?  One of two possible heterosexual events over past 11 years?  Giving first aid to bleeding sports participants with cut hands?   Ill never know for sure.

After leaving the hospital and slowly weening myself  off the drugs i started to have more untoward thoughts.   I was Overwhelmed by the thought of actually  having this illness.  An illness i thought virtually impossible for me to get.  And one i expected to bring a life to a short end.  All indicators for someone like myself are bad -  my age,  suffered a major defining illness,  late diagnosis and very low CD4 count.   

I had thoughts of offing myself to collect work insurance to better support my family’s  future - in the face of what would surely be my shorter  life.  My insurance coverage is terrible.    How could i possibly cope in the very short time i expected i had  left? How could my family financially cope?

Im not naturally predisposed to thoughts of suicide,  and dont believe life in general is inclined to this outcome.  No matter the circumstances - all life on this planet  just keeps trying to find a way to keep Living.  Nevertheless ...i had my fair share of thoughts on how i could acceptably get away with this.  But i just couldnt do that to my family as long as i had a fighting chance through this. 

When diagnosed my Cd4 count was 9.  Percentage was 12.  Im 60.   Other than that I WAS  in otherwise good health and physically very active. 

I say “was” because after getting  out of the
Hospital after nearly 4 Weeks of immobility
I was reduced to nothing.  3 weeks after release  i could muster one pushup.  Thats after daily morning and afternoon physical therapy. Prior the hospital 50 was my daily morning routine.   

They put me on triumeq right away.  Had me on valgancyclovid,  septrim 960x 2 times a day,  PPIs,  antifungals,  xanax,  brintellix and immovane and lots of oxygen.  For two days i was fascinated by the incredibly realistic but fantasy like illusions i was seeing coming out of the trees,  cityscapes,  the woodwork and stone material in my room.   

Ive  read more on this illness and am starting to believe my life saving doctor -  “you can overcome this and live as good a life if not better than before” Its the better than before i find interesting and am believing in! 

Since being let out ive weened myself off the PPIs,  Xanax and Brintellix.  I take half an immovane if i need to - perhaps biweekly.  Im on a prophylaxis course of septrim 960mg once a day. 

Ive returned to decent shape and exercise regularly .  My heart and liver are functioning better than before because of no alcohol,  better diet and im off cozar as bloodpressure is normal l.   although appetite  is voracious and im putting back on lbs with consequent slow rise in blood pressure (probably more due to work stress)

I am negative for CMV and went off valgan cyclovid (wish i had known i was what is considered “a baby hero” before i contracted this because i would have donated all the blood i could”. )

Since My 9 CD4 Nadir ive slowly risen over 6 months to 120.   To me that is painfully slow.  My CD4 percentage is still hovering around 17.  my viral load is down 175 - but not undetectable. 

The physically most challenging part has been the itchy  rashes all over my body and weird small skin lesions which come and go.  The itchy rash is now less frequent and i can manage with a combo of antifungal,  cortisteroid cream and anti histimamines. But this remains troublesome and i worry this will be with me for The rest of my life? 

Im concerned about my Kidneys because my creatinine levels are slowly increasing (now at  124)  - above upper end of threshold of normal.  My GFR just below 60. 

My next goal is to get off septrim because i believe thats the source of my kidney disfunction.  But that seems to be a race between kidney function and CD4 count.  I certainly dont want to give  that nasty PCP room to return.

Other than constantly looking over my shoulder For the next ailment that might strike me,  i am starting to see i can survive to my childs graduation if not longer. 

I have a problem with insurance i will  need to resolve.  need to start looking into that as i expect To leave my company in two years if not before. Any advice is appreciated.   

Im was a very social person who thrives on interactions with friends/family and am struggling  with the secrecy associated with this.  My wife and doctor are the only people i can fully engage with in honest and frank discussions.  They have been  life savers and i particularly value my regular open ended medical and spiritual consultations with my doc. 

Ive a generally positive about life but i certainly get challenged in the face of everything associated with this illness. 

But what can we do except continue to research,  continue to live,  continue to love,  and continue to push forward as best we can.  My friend was just diagnosed with leukemia and remarkably, after all i have now learned i think i drew the better card,  at least if given only two options option - the one id prefer.   

Offline Jim Allen

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Re: Diagnosed this year and learning
« Reply #1 on: November 10, 2022, 04:38:10 am »
Hiya,

Sorry to hear about the rough time with the hospitalization and battling pneumonia and sepsis and of course, the AIDS diagnosis.

Glad to hear you are on the mend and slowly getting better

Although you don't know when you acquired HIV, it certainly wasn't the cut hands, not that it matters as the focus is treatment, healing and living your life.  :)

Quote
Since My 9 CD4 Nadir ive slowly risen over 6 months to 120.   To me that is painfully slow.  My CD4 percentage is still hovering around 17.  my viral load is down 175 - but not undetectable.

These are great results, not sure what your initial viral load was, prehaps you mentioned it and I missed that if so I apologize.

Anyhow, within 6 months, you have the viral load suppressed below 200 so if it remains below 200 for the next 6 months and you keep taking your treatment you will be able to pass on HIV sexually. I would guess that the 175 will drop further within the next few months as you continue treatment.

The CD4 counts, well, the meds don't fix them, that's just up to your immune system to start "healing" for lack of a better phrase, and this takes time. The increase from 9 to 120 is very promising considering all your system has been dealing with.

Quote
The physically most challenging part has been the itchy  rashes all over my body and weird small skin lesions which come and go.  The itchy rash is now less frequent and i can manage with a combo of antifungal,  cortisteroid cream and anti histimamines. But this remains troublesome and i worry this will be with me for The rest of my life?

No, but it could be with you for some time, it should get more manageable and then better though. Lower CD4 counts and skin infections, fungal issues aren't uncommon. Also, you are still taking Trimethoprim / Sulfamethoxazole (Septrin), that stuff although necessary and lifesaving is known to give issues and it did give me additional skin issues, thankfully the Septrin is just for the short term.

Quote
Im concerned about my Kidneys because my creatinine levels are slowly increasing (now at  124)  - above upper end of threshold of normal.  My GFR just below 60.

What were the results before all this?

What did your doctor say? I will presume it was something like don't stress and we will monitor it. This would make sense as an approach since it's okayish and you just started treatments, some will drop off, and you are overcoming multiple infections, it should settle but work with the healthcare provider.

Quote
Im was a very social person who thrives on interactions with friends/family and am struggling  with the secrecy associated with this.  My wife and doctor are the only people i can fully engage with in honest and frank discussions.  They have been  life savers and i particularly value my regular open ended medical and spiritual consultations with my doc.


Secrecy. I tend to think about it as a private manageable medical condition that is nobody's business and I am sure many have manageable conditions they don't advertise or share with everyone and keep to themselves, but I would not call that secrecy.

Quote
I have a problem with insurance i will  need to resolve.  need to start looking into that as i expect To leave my company in two years if not before. Any advice is appreciated.

Can't help you with this one, but thought I would quote it so its highlighted for the next people reading your thread.

Best, Jim.






 

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Offline Shazam9cd4

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Re: Diagnosed this year and learning
« Reply #2 on: November 10, 2022, 11:34:11 am »
Thanks so much for the reply Jim.  My first test of viral load was 2-3 weeks after i was started on Triumeq.  Now i may have this wrong and the result came back for viral load only at that time.  They tested me for HIV after culturing PCP post bronchoscopy  and immediately  put me on ART   The  First VL result came after 2-3 weeks (5700) but i dont actually know at what point after starting meds they drew the sample.   VL results seem to take longer - at least where i am.

As you said it doesnt matter how i contracted the Virus.  Thats a mute point.  But i did wonder.  I am a trained EMT and  treated several people (on What we call Hash House Harrier runs) ho were bleeding profusely.  that said i didnt use protection on those two instances mentioned.  I just couldnt imagine i would have contracted it through those very brief penetration events.   But thats an important lesson isnt it?  Anyone can get this.  The virus doesnt distinguish between race, gender or sexual orientation.  Nor does any other virus.  I screwed hp (literally). And am paying the orice
For those indiscretions. 

gFR and creatinine had always been in the normal ranges.  My creatinine has snuck upwards  over the last 6 months: 108,112, 118, 124 where. Ormally iver oast fee years it was in 90s.     My GFR 58, 62, 54.  My urine clearance  was Fine. 

I did a kidney “mind map” and discussed with my doc.  Your spot on with doctors comments. His response was you will be fine but lets watch. “Your a big guy doing more exercise so creatinine will be higher but its a steady rise and with lowish GFR we need to watch.  He was reluctant to take me off Cotrimoxazole because of my <200 CD4.  I discussed lowering the dose to one SS per day but he was also reluctant until after my next round of tests (early december).

Beyond the odd few skin eruptions and manageable itch which  flares up every 3-4 days  ( It goes away after a few applications of anti fungal cream, an occasional application of hydrocortisone cream,  and potentially an antihistamine.  But its progressively getting better - albeit slowly) in general i seem to be in quite solid health (knock on wood). No fatigue, plenty of energy,   sleeping ok,  no other illnesses,  all other blood test going back into normal zone with exception of creatinine and egfr.   My lymphocytes are still low at .6 but moving in right direction.

I did note a very clear compromise of cognitive function which was quite acute after getting out of the hospital.  That is definitely improving but do question if ill
 regain full function. 

 I would suspect lve at this for many years.  I  try to think back on other OIs but cant think of any - except for a mild fungal rash on my forehead that started last year went away with a week if canestan cream.  I had an ear infection a few years ago after a trip to India and swimming in a pool.  Mild influenza two years ago,  A rare nasal cold once in a while but nothing beyond what could  be attributed to normal living.   before feeling that something was not quite  right last year - that i attributed to covid depression. 

Then  last november i did go to my GP and said “i want you to prove i either have a terminal illness or im a hypochondriac.  I said i just didnt feel right. Low sex drive,  Sleeping not great and not as energetic as i expect (but thought perhaps its just getting older) .  All blood tests were fine.  I had full Medical every year as part of my job.   We tested everything except The important one!  I did have  antibodies for mycoplasma (IgG) but no active or recent infection.   No CMV, EBV, HPV.   i have always had innate immunity to Hep B testing positive for Surface antigen for 15 years (i do wonder if my low CD4 nadir will impact that immunity?). I think my GP was going to
Advise me I was a hypochondriac! 

But then in january my ferritin started shooting up and in my yearly physical i had had a blood test result of pancytopenia.  Haematologist suspected MDS so i had a bone marrow biopsy which was fine and recommendation was to monitor.  Over the next couple months all blood cell counts improved back to normal range.  But ferritin continued to rise upwards of 1400.  That Combined with my shortness of breath triggerred me to check myself in for a range of diagnostics. 

So im in a bit of a holding pattern for now. I go for a complete range of testing in early december.  Ive got a name of a skin specialist who treats patients with HIV but ive put that off because my skin condition seems to be improving and doesnt impact
Sleep. 

I seem to be handling triumeq ok.  But am keen to get off cotrimoxazole.  I just hope i am not permanently damaging my kidneys before getting of TMP. 

So - I am feeling more confident about my future and am hopeful ill get over
This hump...... and the paranoia over every possible thing i might encounter which would exploit my weak immunity. 

One final question -  I Would like to ask does U=U really mean you cannot  transmit? Mentally im not sure i can get over Being positive and the fear of passing to my wife (or anyone else) even if there is a minuscule Chance. Frankly  Im not sure ill be able to cross that barrier.   








Offline Jim Allen

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Re: Diagnosed this year and learning
« Reply #3 on: November 10, 2022, 12:11:16 pm »
Quote
As you said it doesnt matter how i contracted the Virus.  Thats a mute point.  But i did wonder.

We're not wondering, the hand's story isn't an HIV concern. I mean you well but I'm politely asking to move on from this point and it's not a suggestion.

Quote
My first test of viral load was 2-3 weeks after i was started on Triumeq.  Now i may have this wrong and the result came back for viral load only at that time.  They tested me for HIV after culturing PCP post bronchoscopy  and immediately  put me on ART   The  First VL result came after 2-3 weeks (5700) but i dont actually know at what point after starting meds they drew the sample.   VL results seem to take longer - at least where i am.

Okay well if your initial viral load although after two weeks of treatment was 5700 and it's now down to 175 within 6 months that's great. The meds are working and doing what they are supposed to do. :)

Quote
gFR and creatinine had always been in the normal ranges.  My creatinine has snuck upwards  over the last 6 months: 108,112, 118, 124 where. Ormally iver oast fee years it was in 90s.     My GFR 58, 62, 54.  My urine clearance  was Fine.

Quote
I did a kidney “mind map” and discussed with my doc.  Your spot on with doctors comments. His response was you will be fine but lets watch. “Your a big guy doing more exercise so creatinine will be higher but its a steady rise and with lowish GFR we need to watch.  He was reluctant to take me off Cotrimoxazole because of my <200 CD4.  I discussed lowering the dose to one SS per day but he was also reluctant until after my next round of tests (early december).

Your doctor's advice on this is solid. With a low CD4 count and still recovering from infections lowering or taking you off the antibiotics could be disastrous. The difference in results you mentioned is minor/mild if you keep in mind that these will always fluctuate somewhat between tests even if everything was peachy.

Quote
So im in a bit of a holding pattern for now. I go for a complete range of testing in early december.  Ive got a name of a skin specialist who treats patients with HIV but ive put that off because my skin condition seems to be improving and doesnt impact
Sleep.

Up to you, but if you can see a specialized dermatologist and it's not going to put you out of pocket, I would do it.  At the very least, they can confirm you are on the correct path or prehaps provide additional treatment to manage the skin issue better.

No point in being itchy and uncomfortable if you don't need to be.  ;)

Quote
would suspect lve at this for many years.  I  try to think back on other OIs but cant think of any - except for a mild fungal rash on my forehead that started last year went away with a week if canestan cream.  I had an ear infection a few years ago after a trip to India and swimming in a pool.  Mild influenza two years ago,  A rare nasal cold once in a while but nothing beyond what could  be attributed to normal living.   before feeling that something was not quite  right last year - that i attributed to covid depression.

I would agree that you have had this most likely for many years, prehaps as long as a decade+. However, these issues mentioned all sound pretty common regardless of HIV status.

Quote
I Would like to ask does U=U really mean you cannot  transmit? Mentally im not sure i can get over Being positive and the fear of passing to my wife (or anyone else) even if there is a minuscule Chance. Frankly  Im not sure ill be able to cross that barrier.   

Look, it's still the early days of your diagnosis, it's a lot to digest, and plenty of us need time before getting our heads around the fact that we can't pass it on. Also, your wife I am sure is going to need time to digest your diagnosis and all the facts.

I have half a section of the forum filled with posts from mostly newly diagnosed people asking about U=U, sharing household items and cutting their fingers etc: https://forums.poz.com/index.php?board=28.0 I keep these types of posts separated for a reason.

Anyhow, in short, if the viral load is UD (under 200 copies) for 6+ months whilst on treatment and you then continue to take your meds, you can not transmit HIV sexually. U=U isn't new; the swiss statement to this was made in 2008 and studies on TaSP (Treatment as prevention) goes back 24 years now.

So you now have a viral load of 175, keep taking your meds and monitoring your viral load during check-ups but if in 6 months it's still suppressed, then you can't sexually pass it on.


« Last Edit: November 11, 2022, 10:22:57 am by Jim Allen »
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Offline Jim Allen

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Re: Diagnosed this year and learning
« Reply #4 on: November 10, 2022, 12:21:51 pm »
Quote
I did note a very clear compromise of cognitive function which was quite acute after getting out of the hospital.  That is definitely improving but do question if ill
 regain full function.

You have had a really rough time. Can't answer this for you but I know that generally, you need time to "recover" or "heal" so this might continue to get better over the months ahead. 
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Offline leatherman

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Re: Diagnosed this year and learning
« Reply #5 on: November 10, 2022, 02:31:53 pm »
One of two possible heterosexual events over past 11 years?
maybe. probably. but it doesn't matter.

I say it that way because ending up in the hospital with PCP and 9cd4 sucks badly, and is how many people find out that they have advanced HIV (i.e. aids) and getting to that stage usually takes time (like years of undiagnosed, untreated HIV). But that's in the past (literally) and now it's time to deal with the future.

While like you, I'm 60; unlike you, I ended up in the hospital in my late 30s (36 and 38 brithdays) with PCP/AIDS. My cd4s were 5 and 7. Ugh those were dark days. But thankfully the drugs were improving, and I got better.  :o That makes it sound so much easier than it really was. God, I was sooo sick for being half-sick all the time. Recovery seemed to take for-ev-er. When you're feeling crappy, it's easy to fall into a bad mindset too and worry a lot about the future. I would tell you not to worry; but that just doesn't work. Instead I'll tell you to just keep hanging on. It's so hard to take one day at a time; but sometimes you just have to while the world rushes on.

Quote
So - I am feeling more confident about my future and am hopeful ill get over
This hump...... and the paranoia over every possible thing i might encounter which would exploit my weak immunity.
OMG. I so get this! I was such a germophobe after I got out of the hospital, and for quite a while. To be honest, that kind of health crisis probably left me with a little PTSD, but don't all tragic events? even today I think about germs sometimes. People sneezing in the grocery store really set my nerves on edge. It was really great while everyone was wearing masks and staying home because of covid.

I did note a very clear compromise of cognitive function which was quite acute after getting out of the hospital.  That is definitely improving but do question if ill regain full function.
we used to talk about it a lot more, back in bad ol' days when there weren't meds or just the first meds-  brain fog. Advanced HIV often brings about mild cognitive issues. So does battling pneumonia. Even being in a hospital for several days can bring about these issues.

After starting meds, HIV begins decreasing (lower vl) and tcells recover (increase cd4)....and then the kicker is that your body which wasn't fighting diseases in your body, recovers enough to start fighting which brings about side effects (including brain fog). I mentioned earlier how much I hated recovery. It seemed to last forever, though it was probably 3-6 months, and I felt like I was always half sick. It was crazy to think how crappy I felt and yet that was the sign I was recovering and was going to live. Hopefully your recovery will be easier soon and over shortly!


Now I really am a practical guy, so I have a couple pieces of advice for you.

Getting HIV treated at almost any point in the disease can mean a good future. I've got bunches of friends who like me were on the brink of death, and we're still here 30 and 40 yrs later. Take the meds, recover from the PCP, and expect to live.

Having been in a hospital twice almost dying on my birthday, I came away with the firm belief that any day you are NOT in the hospital, no matter how awful that day is, is still a great day! Maybe not today, but in the next few years, you'll probably even find yourself a happier person. Not dying in the hospital is an excellent incentive to enjoying every day and loving the people you care about.
leatherman (aka mIkIE)

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: Diagnosed this year and learning
« Reply #6 on: November 11, 2022, 09:58:26 am »
Wow.   Thats a pretty amazing Journey Jim and happy you made it past 60 and likely many more years.    I cant imagine what it was like in those early days when treatment was in its infancy.  You had to be tough to get through that and are now being rewarded helping so many people deal with this virus.

Appreciate all your advice here.  I am sure you know  how important it is to be able to chat about this. 

Can i ask - between your two bouts of PCP what treatment were you on? I imagine as you said CD4 never really recovered between bouts?  What do you think prevented it coming back a third time?  Did you get on new meds/treatment plan? Any other OIs to battle through? 

I appreciate you seconding my doc on staying on the TMP prophylaxis. I had read that studies showed that reducing dose between 100-200 was relatively safe if. Ot equally so.  On the one hand id love to be off this med but on the other hand its better than a recurrent infection of PCP.  Those articles are

https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adult-and-adolescent-opportunistic-infections/pneumocystis-0

https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-021-06374-3

I also have to consider another nasty bug. When i was  out of the  hospital i got results back from a sputum sample taken just before entering.  Took a long time to get results back with sensitivity tests which showed  i also had mycoplasma lentiflavum.  Apparently quite a hard one to diagnose So more reason to stay on TMP until me CD4 count  recovers.   Doctor isnt concerned about this just monitor and treat if symptoms do show. 

Ill see that skin specialist next week.  And provide any interesting update.   Looking forward to my next round of blood tests in a Few weeks. 

Would you have any feedback on loss of innate or acquired Memory cells during low CD4?  I am curious how much of both my developed resistance over my life has been lost,  and how much of my innate resistance (ie Hep B and CMV) may be lost.  My doc also mentioned once my CD 4 counts are higher we should start talking about vaccines? .  There is not much written in these subjects.   Seems to be an emerging area of focus? 

As a final comment i am very fortunate to hAve a great wife who is very understanding.  She was certainly shocked and didnt quite understand how it was possible to contract but she has been visiting all docs with me and we are learning together. She hardcore practical and expects me overcome this...and just get on with it.   Better than a raft of  other illnesses so many others are getting. Frankly  She also likes my change of attitude - not fretting over the little things and being far more proactive about finding the good in each day.   She recently overcame breast cancer and  i was the solid anchor during that.  Now she is the solid anchor.   I cant say enough about her and how supportive she has been.  I consider myself quite lucky. 

Many thanks

Offline Jim Allen

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Re: Diagnosed this year and learning
« Reply #7 on: November 11, 2022, 10:16:29 am »
Quote
My doc also mentioned once my CD 4 counts are higher we should start talking about vaccines? .  There is not much written in these subjects.   Seems to be an emerging area of focus?

Here is a short list of recommended vaccines from the CDC
https://www.cdc.gov/vaccines/adults/rec-vac/health-conditions/hiv.html

It's not an emerging area of focus.
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Offline leatherman

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Re: Diagnosed this year and learning
« Reply #8 on: November 11, 2022, 11:10:36 am »
Can i ask - between your two bouts of PCP what treatment were you on?
ok. Some explanation. My bouts of PCP were back in 96 and 98. In those days, the meds just weren’t all that good (although, I give them credit for keeping me alive!), with lots of negative side effects (for me, barfing. A lot of barfing for a lot of years). Resistance was a LOT LOT easier to get too. These days 95% adherence to daily meds gives successful treatment. In those days, missing a couple of days (from barfing, just not wanting to take the damn things if they were only going to make you feel sicker, the horrible timing of did you miss a med 2 hrs before or 2 hrs after a meal, etc) could make the meds not work very well anymore. Both times I went into the hospital I had those kinds of issues. The first time was simply meds not working well, and increasing resistance to the pills I was taking. (not to mention the depression of losing my first long-term partner to HIV/PCP/Thrush) The second time, I had had to stop a med because of the horrible side effects, and was trying to hold onto life until something new came to market - which it the day I went into the hospital. Thank goodness!

TBH there should have been a third time in the hospital. The med side effects were really bad again, and I was having a hard time taking the meds anymore. I got very sick but instead of going to the hospital (I wasn’t quite at death’s door that time), I went out and got a new doctor.  ;) That got me a new prescription, and set me on the road to still being here today. ;D

I have to say I LOVE Dr. Fiorentino. Unlike my old doctor (who tbh was going through his own PTSD after losing so many patients to HIV in those early years), Dr. Marc worked with me through so many new HIV meds to get a regimen that not only worked but didn’t have side effects that I couldn’t handle. He was also there stuck in the hospital with me one blizzard-y weekend (Ohio in March can be a b!tch) when my second long-term partner was passing from HIV and non-hodgkins lymphoma. Although I’ve got a GREAT doc here in SC, Dr. Fiorentino will always be in my heart for helping me through a LOT of bad times.

Quote
I appreciate you seconding my doc on staying on the TMP prophylaxis. I had read that studies showed that reducing dose between 100-200 was relatively safe if. Ot equally so.  On the one hand id love to be off this med but on the other hand its better than a recurrent infection of PCP.
Oh no, you don’t want PCP a second time, that’s for sure! :D
I was taking Bactrim….for a long time. Don’t forget by this time, I had had PCP twice and gone through no meds or a ton of crappy meds, had cd4s <200 for a long time and been HIV+ for almost 30 yrs. I took bactrim until I finally hit 200 cd4s when I cut it back to 3X a week (because I was developing an allergy to it) until I reached and stayed above 250 cds (I really hadn’t wanted to ever have PCP again and that’s why I waited until 250). In total, I took Bactrim for 10 years!! But I’ve never had PCP again!  :P

Unfortunately I wasn't kidding about developing an allergy to bactrim. A few years ago I had a prostrate infection (A nice change of pace really. An old man having a younger man's problem. LOL) and was prescribed bactrim. Why not? It was a good friend to me for many years. Unfortunately I was completely allergic now and broke out in hives an hour later. Needless to say, I got the antibiotics switched to something else. LOL

Quote
She recently overcame breast cancer and  i was the solid anchor during that.  Now she is the solid anchor.   I cant say enough about her and how supportive she has been.  I consider myself quite lucky. 
awwwww! That’s sweet. :X Sounds like you both have good support… and love! You can’t be luckier than that!
leatherman (aka mIkIE)

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: Diagnosed this year and learning
« Reply #9 on: November 11, 2022, 10:52:23 pm »
Thank you Mr. Leatherman!   Appreciate the time for the great reply.  I am glad you found a good doctor!  Is he still your go to?   Like a good teacher they make all the difference.  I am also fortunate to have a great doctor.  No end to his capacity to listen,  respond,  research areas he may not have knowledge of on my behalf, be there for me at any tome of day or night,  and be interested in my progress.

Can i ask a few rapid fire questions and no hurry for a response.  how long have you been above 250?   Have You been on the same meds since?  Can i ask what they are?  My public hospital doc wants me to switch from Triumeq to dovato as soon as im stanle above 200.   My specialists is wary of the change providing tirumeq is working well and no substantial side effects.  I do note posts from people who made this switch with continued positive results.     

Finally - as you CD4 counts increased towards the 200 level did you notice a clear strengthening of immunity and reduction of minor ailments like skin rashes,  fungal infections et al?  As my CD4 went above 50 that seemed to clear up an occasional thrush so that not impacting me anymore. My little off skin lesions came and went.  So that seems to have cleared.   My itchy rashes (mainly on mid back,  shoulders, back of upper arms, back of neck and around eyebrows &  sides of nose) is less frequent,  no longer embarrassing, and more easily managed -  but still flaring up every few days.

Thats all!   Enjoy your day! 


Offline Shazam9cd4

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Re: Diagnosed this year and learning
« Reply #10 on: November 11, 2022, 10:58:44 pm »
“Here is a short list of recommended vaccines from the CDC
https://www.cdc.gov/vaccines/adults/rec-vac/health-conditions/hiv.html

Thanks Jim.  Very useful.  Will have the conversations on the 29th of this month.

My reference to emerging area was not with regards to vaccines but with regards to impact of Damaged immune system and Collapsed CD4.  Do we have to start over on the immunity we have established throughout our life,  or the immunity we maybhave been granted at birth?  I havent been abpe
To find much info on this. 

Thanks



Offline Shazam9cd4

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Re: Diagnosed this year and learning
« Reply #11 on: November 12, 2022, 02:29:29 am »
Quote
“Here is a short list of recommended vaccines from the CDC
https://www.cdc.gov/vaccines/adults/rec-vac/health-conditions/hiv.html

Thanks Jim.  Very useful.  Will have the conversations on the 29th of this month.

My reference to emerging area was not with regards to vaccines but with regards to impact of Damaged immune system and Collapsed CD4.  Do we have to start over on the immunity we have established throughout our life,  or the immunity we maybhave been granted at birth?  I havent been abpe
To find much info on this. 

Thanks


« Last Edit: November 12, 2022, 03:50:38 am by Jim Allen »

Offline Jim Allen

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Re: Diagnosed this year and learning
« Reply #12 on: November 12, 2022, 04:40:33 am »
Quote
Do we have to start over on the immunity we have established throughout our life,  or the immunity we maybhave been granted at birth?

Quote
Would you have any feedback on loss of innate or acquired Memory cells during low CD4?  I am curious how much of both my developed resistance over my life has been lost,  and how much of my innate resistance (ie Hep B and CMV) may be lost.

I've always thought to be safe, just to presume that my immune system had forgotten anything I had immunity to through vaccination or illness before acquiring HIV.  This might be different for folks who are lucky enough to be diagnosed and start treatment early. 

Given I did not start treatment until extremely late (things were different in the past), I also presume that any immunity gained towards illness or vaccination before starting HAART was also lost.

Research going back to the late '90s supports this and that HIV causes immunological memory problems/loss, be it acquired from previous infection or vaccination. I feel some newer studies after the 2010s are like reading a paper investigating and concluding water is wet.

How much you as an individual have lost and have to rebuild, no idea. As far as I know, there isn't anything much that can be done about it once this loss except reteaching the immune system by getting vaccinated against the things you can and then dealing with any infections as they occur.

Best, Jim.

Some references:

https://pubmed.ncbi.nlm.nih.gov/31867597/

https://academic.oup.com/jid/article/222/2/176/5684907?login=false

https://www.nature.com/articles/pr2009185

https://journals.lww.com/aidsonline/Fulltext/2001/05250/Loss_of_memory__CD27__B_lymphocytes_in_HIV_1.3.aspx

https://ashpublications.org/blood/article/108/5/1580/132625/Loss-of-memory-B-cells-impairs-maintenance-of-long
« Last Edit: November 12, 2022, 04:46:17 am by Jim Allen »
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Offline Jim Allen

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Re: Diagnosed this year and learning
« Reply #13 on: November 12, 2022, 04:47:46 am »
I've always thought to be safe, just to presume that my immune system had forgotten anything I had immunity to through vaccination or illness before acquiring HIV.  This might be different for folks who are lucky enough to be diagnosed and start treatment early. 

Given I did not start treatment until extremely late (things were different in the past), I also presume that any immunity gained towards illness or vaccination before starting HAART was also lost.

Research going back to the late '90s supports this and that HIV causes immunological memory problems/loss, be it acquired from previous infection or vaccination. I feel some newer studies after the 2010s are like reading a paper investigating and concluding water is wet.

How much you as an individual have lost and have to rebuild, no idea. As far as I know, there isn't anything much that can be done about it once this loss except reteaching the immune system by getting vaccinated against the things you can and then dealing with any infections as they occur.

Best, Jim.

Some references:

https://pubmed.ncbi.nlm.nih.gov/31867597/

https://academic.oup.com/jid/article/222/2/176/5684907?login=false

https://www.nature.com/articles/pr2009185

https://journals.lww.com/aidsonline/Fulltext/2001/05250/Loss_of_memory__CD27__B_lymphocytes_in_HIV_1.3.aspx

https://ashpublications.org/blood/article/108/5/1580/132625/Loss-of-memory-B-cells-impairs-maintenance-of-long

P.S

Prehaps it's a question to ask your HIV specialist the next time you see them. Get their opinion on the subject.
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Offline Shazam9cd4

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Re: Diagnosed this year and learning
« Reply #14 on: November 12, 2022, 10:01:28 pm »
Really great and important advice.  Thanks for the info sources.  I did ask my specialist and his response was along the same lines. “ You may have to rebuild and you can rebuild”  You may have some innate immunity remaining,  you may have lost it. Its a very complex system and every person is different.  One persons immune system at 150 CD4 count will be completely different than another at the same count.   

Not only is this a fascinating area but i also want to have a better understanding of what may hit me during reconstitution/beyond and what i might need to be prepared for.    Ive been immune to Hep b?  Is that immunity gone? (Ill be tested for those antibodies next time). Ive somehow avoided CMV and given my previous lifestyle suggests i had some innate defence Against CMV.  But what  about now?  Are those defences gone?    i was positive for EBV IgA a couple years ago With no obvious symptoms.  Now?  I notice mosquito and other insect bites now get Inflamed whereas i was previously unaffected. (Have you experienced anything similar?)  Im also 60 and won't have the chance to swim in the petri dish of youthful living so wont be able to build up the immunity as i did before, but by the same token probably wont have to worry about coming into contact with the complete spectrum of bugs in that petri dish.

Offline leatherman

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Re: Diagnosed this year and learning
« Reply #15 on: November 13, 2022, 07:14:10 am »
I notice mosquito and other insect bites now get Inflamed whereas i was previously unaffected. (Have you experienced anything similar?)
every summer someone starts a post about mosquitoes. What we've learned through our shared experiences is that some people must be tasty and some aren't. There are about as many people who aren't effected at all as there are people who get very itchy or worse by bug bites. Limited research has suggested that PLWH may be more suspectable to being irritated by bug bites because of increased histamine in our systems.

Personally, since I was child I've always be eaten alive by mosquitoes and the bites always welt up. Being HIV+ didn't change that for the worse...or the better. Living in SC, with woods surrounding my house, I don't go outside without spraying myself down with OFF first.

Im also 60 and won't have the chance to swim in the petri dish of youthful living so wont be able to build up the immunity as i did before, but by the same token probably wont have to worry about coming into contact with the complete spectrum of bugs in that petri dish.
I think you're worrying about stuff you need not worry about. As your immune system recovers, it'll work on fighting off bugs that come along. It's not like you'll end up having childhood diseases all over again.

To answer another question in the mix, yes, as your cd4s increase**, your immune system will being fighting again on the issues you're having. All the rash-y, thrush-y etc problems will clear up. Personally I have to say that my since I got over the 200 mark (which happened in my early 40s), I've been healthier than I ever was, even before I was HIV+ in the early 80s.

**don't get too stuck on how many cd4s you have. The goal is to suppress HIV to Undetectable, so you body and immune system will work the way it's supposed based on the genetic you got from your parents. The cd4 count is just that - a count. It's not, and there is no test for, a result of the strength/performance of your cd4s. Someone people with high cd4 counts get sick a lot while others with a low count never get sick (that's the group I've been in. except for a couple days dealing with covid, I haven't had many health problems, not even a cold or flu, in a decade and a half.)
leatherman (aka mIkIE)

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: Diagnosed this year and learning
« Reply #16 on: November 23, 2022, 07:21:18 pm »
Hi Leatherman!   Thanks for you post again.  I dont “think” your right -  i “know” your right.   I do worry to much - got that gene!  It is good to see my skin issues declining in frequency and severity as my CD4 rises and Vl falls.  Clear cause and effect.   I did see a deematologist who treats HIv patients.  Was a great 45 minutes talking to someone else i can be open to f2f.   He shed alot of practical light on the course of my skin issues and as a combo of response to immune reconstitution,  and some fungal growth.  He recommended i continue doing what i am - adhering to treatment,  treating acute conditions as needed,  moisturising my skin more frequently.  Most days are now itch and embarrasing facial rash free!   he has been treating patients for years with similar course through early days of diagnosis and now many if these patients are in their 80s.  None of my skin conditions worried him.  We did freeze a couple warts off.  I showed him photo sequences of some ugly dark purple short lived lesions which  he did suggested may have been some flareups of karposis but  resolved on their own as my immune system recovered under Treatment.  This was of course inly a diagnosis from a serious of photos.   I didnt know karposis was a Herpes cousin ir that it could resolve so quickly.  Anyone hear with similar experience or any experience with Karposis while recovering on ART?

Offline Shazam9cd4

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Re: Diagnosed this year and learning
« Reply #17 on: December 17, 2022, 04:25:14 am »
I posted below  in the wrong thread so am positing it here with one addition comment:
The doctors suggested i reduce my cotrimoxazole prophylaxis from a DD 960mg per day to a single dose 480) with a CD4 of 94.  They were quite convincing this would provide the necessary protection against PCP.  ????   

“ I just received results of my December blood work.
 They are i guess as can be expected given the variability of CD4 over short periods of time.  I was hoping after 3 months they would continue a steady rise up but that was not to be.    All WBCs were down which i have a hard time not being concerned about.   But on the positive side my VL was down and my creatine seems to have stabilised.  Results since April from when i first realized i was pos. 

           Apr/may/jun/aug/sept/nov
Cd4.     9/13/41/73/104/94
Cd4%   8/12.8/17.5/17/17.2/16.8
CD8.    58/25/76/110/141/120
Cd4/8 .16/.52/.55/.66/.74/.79
Vl.             ?/5000/?/247/175/91
CTN.      ?/116/112/118/127/121
WBC.     2.4/3.5/3.4/4.5/4.5/3.8
Lymp.   .1/.3/.4/.5/.6/.6

I guess 2 data points dont make a trend (last two).  So will need to hold tight for the next one.   

Another good result was my HbsAb titers remained high at 399.  So the antibodies survived the CD4 collapse.   Will
Br interesting to check my covid antibodies in another month after natural infection and compare to vaccine results.

Offline leatherman

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Re: Diagnosed this year and learning
« Reply #18 on: December 17, 2022, 07:14:38 am »
I was hoping after 3 months they would continue a steady rise up but that was not to be. 
I guess 2 data points dont make a trend (last two).  So will need to hold tight for the next one.   
ah, Math. Gotta love it!
The rule of thumb I tell people is to consider at least 3 test results over a period of at least 3-6 months.

Don’t feel bad when I tell you that most newbies think they’ll get a steady rise in cd4s --- and that is just not how recovery usually works. Recovery is almost never a straight line function of cd4s rising and VL decreasing. It’s usually a jagged line as those number bounce around towards getting better. For some people recovery happens fast; for others it can take much longer.

A blood test is simply a snapshot at that one particular time. What if you’re stressed, tired or anxious at the doctor appt? That could change the cd4 count. What if some of the HIV (like in the latent reservoirs) was active? That could change the viral load. And yet within a matter of minutes those factors could change and if drawn again, the blood work would show different results.

Your heart rate changes all the time, as does your blood pressure. Heck even the pressure in your eyeballs is a fluid number. CD4s aren’t much different, just the rate of change is different as they can change by 100 points in a single day.

 I think we're just so used to having mild health issues that can usually be resolved so quickly (take a couple pills and the problem is gone). But untreated HIV isn’t a mild health issue. Untreated HIV (which yours was until about half a year ago) is more like cancer or leukemia which don’t have quick fixes but does have complicated recoveries.

           Apr/may/jun/aug/sept/nov
Cd4.     9/13/41/73/104/94
Cd4%   8/12.8/17.5/17/17.2/16.8
Vl.             ?/5000/?/247/175/91 
so with cd4s changing by 100 points in a day, your cd4 count has basically held in the same range with a mild increase and that’s good. In your situation, under 200 cd4, is the best time to consider the cd4% (when your health improves, this more refined number should hold pretty steady and the only number you’ll need to worry about is VL=UD). Clearly the amount of cd4s in your system has doubled in just 6 months and that really is excellent news!

The doctors suggested i reduce my cotrimoxazole prophylaxis from a DD 960mg per day to a single dose 480) with a CD4 of 94.  They were quite convincing this would provide the necessary protection against PCP.  ????   
Well since your system is definitely recovering from HIV, there are other guidelines for the prophylaxis that can be considered: reducing the dosage or even alternating days. While it may seem scary to you right now, so recent to your diagnosis and it’s effect on you life (and brain/thought processes/emotions), treating the HIV changes everything for the better. People have literally been on their deathbeds and fully recovered (within a reasonable amount of time) because of the medications. While you still might feel like your health is precarious, your HIV is now clinically suppressed (while UD is the goal, a VL under 200 is the scientific standard) and your cd4s are increasing at a steady pace.
leatherman (aka mIkIE)

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: Diagnosed this year and learning
« Reply #19 on: December 20, 2022, 02:28:08 am »
Really appreciate your reply Mr Leatherman.  Gives me a more positive perspective!  Thank you!

Offline Shazam9cd4

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Re: Diagnosed this year and learning
« Reply #20 on: January 18, 2023, 05:07:41 am »
I reached an emotional low point yesterday.  All the past 8 months from a acute illness in ICU,  to initial diagnosis, a month recovery in the hospital, to 3 months medical leave,  an insurance company who cancelled my policy,   to learning to live with this thing called HIV, while trying to be normal with family and friends, constantly looking over my shoulders for the next ailment sneaking up on me, to  getting back to work and trying to live as normal Life as possible under the cloud of HIV - it all came crashing down yesterday post a medical exam required to apply for canadian PR.

I was nervous about this.  Although they cannot necessarily deny me under a spousal sponsorship that seems ultimately left to the judgment of a handful of people and its the near final hurdle to being approved. 

The tests requires HIV testing amongst others (heptb&c, creatinine, CXR, STD markers,  TB)  so i had to disclose my condition.

The clinic was packed with people standing room only while i had  to change into a robe and sandles and wait.  I was led around from one station to the next for  xrays,  blood taking, urinalysis,  eye exams, BP and then a doctors consultation.

My blood pressure was through the roof and i could barely lower it. I managed to get it  below a canadian required cut off threshold.   Since my acute illness i regularly measure and record my blood pressure and had measuraments over the past 6 months.  My 30 days average is 121/75 against 48 readings.   I always had white coat hypertensions but yesterday was extreme. Having to stand in packed standing only rooms, in a overly small blue bat robe (women had pink!!!), getting poked, prodded and assessed, having to disclose my condition to so many people at the clinic,  for an event so important for my future.   The consultation was absurd and doc way out of his depth, having to read a manual on how to deal with me, and advising me to “hurry up and relax” so my blood pressure readings could get below 160/100.

I tried to out a strong face on but after the 3 hours and walking back to my car i broke down in the arms if my partner which hadnt happened since well before my diagnosis.  It all came out. All the anxiety,  pressure, Emotional drama of the past 8 months. But frankly i probably needed that.  An emotional re- alignment.  Now my fate is in the hands of the canadian immigration authorities and the individuals who will cast their eyes across my files.  Nothing i can do about it now.   Just deal with itnwhen the decision is made. 






Offline Jim Allen

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Re: Diagnosed this year and learning
« Reply #21 on: January 18, 2023, 05:38:42 am »
Sorry to hear it was a rough appointment for you, but glad to read your partner was there to support you at the end.

Fingers crossed that the medical report will be positive and not a roadblock to what you want to do.  :)
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Offline Shazam9cd4

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Re: Diagnosed this year and learning
« Reply #22 on: Today at 03:03:04 am »
Thanks Jim.   I only heard back from the lab on the medical reports for immigration today.   They need to have my specialist provide a form with progrnisis before they can submit back to complete the application processing.

I did find out my viral load in the test they took was 75.  I do have a question:  most of what i read says BL should be undetectable within 3-6 months of treatment.   I am now  on 9 months and my VL is still detectable.   How concerned should i be?  Is this considered low level viremia?   I read on ibase that in rare cases people remain with detectable levels after 6 months or even a year.   I am strongly adherent and havent missed a day of taking triumeq.     Appreciate any feedback or reference to other articles/studies on this? 

Offline leatherman

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Re: Diagnosed this year and learning
« Reply #23 on: Today at 06:50:23 am »
most of what i read says BL should be undetectable within 3-6 months of treatment.
"most" is not "all". Getting to an undetectable VL is not a race and is very individualized. It's based on how high your viral load was, how long you've been on meds, and most especially your own individual genetics. Most people reach undetectable in the first year....but not everyone. And some people never reach undetectable.

However, I should point out here that "undetectable" is not really the basis you should need to worry about. The actual scientific definition of "successful treatment with a suppressed viral load" is actually not undetectable but anything less than 200. (a goal that you have clearly reached).

There are quite a number of personal stories here about this issue. For example, it took me 15 years to reach and stay undetectable (it also took that same amount of time to reach and stay above 200 cd4s). We also have several members who have never reached undetectable but have certainly been in that <200 range since they have been quite healthy for well over a decade or two.

Just keep taking your meds daily, and don't stress on this issue. With a VL of 75 you'll clearly getting closer to undetectable, it's just taking a little longer for you.
leatherman (aka mIkIE)

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: Diagnosed this year and learning
« Reply #24 on: Today at 10:17:43 am »
Thank you Leatherman.  Sooooooo appreciate the perspective! Really helps me move forward with more confidence! 

Offline leatherman

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Re: Diagnosed this year and learning
« Reply #25 on: Today at 12:11:25 pm »
Really helps me move forward with more confidence!
one thing I like to ask myself sometimes is "how am I feeling"? Not how is my HIV, the meds, the depression, the stress. Just how am I feeling right now.

Personally, because I was in the hospital a few times really close to death, I've come to believe that any day that I'm NOT is a hospital is a pretty damned good day. :D Heck even if the weather is bad, the bills are past due, my car has stranded me by the side of the road (between my cars and the courier vehicles I've driven, I've been stranded 28 times after a wreck or car breakdown), or anything else has gone wrong (house fires, burglaries, etc.), simply being alive makes any day start off at least 90% good. :D Then if you're feeling pretty healthy for your age, that's gotta add another 5-7% happiness to your day.

So sometimes instead of examining your cd4s or vl or bp or sugar or whatever, simply examine how you are feeling. If you're feeling good, then go with that feeling. Anybody here who has lived with HIV 30 or 40 years will tell you that a positive attitude will carry you through a lot more years that worrying if you vl is 50 or undetectable, or if your cd4s are 500 or more. ;) :D

The only caveat to being able to keep this kind of happiness is to live your life and, of course, adhere to your daily meds.
leatherman (aka mIkIE)

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"

 


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