Shazam9cd4:
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.
Jim Allen:
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. --- End quote ---
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? --- End quote ---
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. --- End quote ---
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. --- End quote ---
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. --- End quote ---
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.
Shazam9cd4:
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.
.
Jim Allen:
--- Quote ---As you said it doesnt matter how i contracted the Virus. Thats a mute point. But i did wonder. --- End quote ---
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. --- End quote ---
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. --- End quote ---
--- 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). --- End quote ---
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. --- End quote ---
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. --- End quote ---
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. --- End quote ---
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.
Jim Allen:
--- 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. --- End quote ---
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.