Almost 2 years now

[Shazam9cd4]

I want to first apologize for this long email.

I havent posted anything for so long because ive had so many changes in my kife - changed homes, mbecome a permanent residence of a new country and moved family,  changed  jobs,  put my kids into new schools,  and all the while trying to get over the fact im living with this illness

Its coming up on 2 years since i tested positive.  What a long bumpy ride. 

I first learned i was positive because i checked myself into the hospital for a few days to do a series of diagnostic tests.  A few months before 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 very mild cough that over months progressed.  Then it went away, then slowly again, over a couple months, it developed ever so slowly again into a bothersome cough.  After negative chest xrays, CT scans,  endoscopes,  CBCs, 4 doctors said i had typical post nasal drip due to the poor air quality where i lived.

Then, quite suddenly 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 to a hospital for a series of tests to be performed over 3 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.

A few months prior to this time - The doc who was now coordinating the hospital stay (saw him for the persistent cough) had asked me if i had been tested for HIV. Although we discussed it i didnt think that was a possibility so didnt.

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 believed i would be in and out and back to work on the 4th day.  The first test was a CT scan which shower enough coronary  plaque buildup
To warrant a stent.  We thought problem solved - we found the culprit.

On the second day i was wheeled back from my bronchoscope and  almost  immediately went into respiratory failure succumbing to sepsis and severe pneumonia.  (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. fortunately, before that could serve its ultimate purpose, ended up recovering enough to leave the hospital using a walker.

The diagnosis of the sample taken from the bronchoscope was PCP and subsequently tested positive with a CD4 count of 9.  Didnt have a VL test.  They immediately put me in Triumeq (after testing for the HLA B 5701 gene test)

It was Very hard to get My head around what just happened and somehow find the strength to keep moving forward. 

Telling my wife.  The anticipation of her results.  The fear of my kids testing positive.  Learning about this disease. Learning to walk again, The Insurance problem (cut off) Taking each day as it came - one step at a time.

I was fortunate i suppose 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 those first months as my CD4 counts ever so slowly rose.

Bug bites/mosquito bites were exaggerated and terribly uncomfortable.

A good nights sleep  has been a constant struggle but the good nights per week are increasing.

blood profiles most if which were completely out of normal rangesare now almost all within normal ranges - with the exception of the lymphocyte subsets

Still lingering issues: 

- Kidney function decreased but seems to be stabilising.
- Weight higher than it ever has been and hard to loose with a voracious appetitive. But now stable with easier access to nature and facilities
- In general health is ok.  I had to take 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 ever so slowly after all this time.  1.5 years after starting ART it was 254.  I celebrated getting above 200 in november.  Small victories.
- I acheived UD status after 12 months but that was only once. Its been hovering between 30 and 50 since.  I know thats a minor fluctuation but there is something wonderful about seeing “UD” on the lab report
- Still on co-trimox.  Single dose. Dropping from two to one seemed to help with the skin ailments. Docs still want me to stay on it until the next round of tests.   I dont know how this long term use of septrim is impacting me, or what will  happen when i go off long term use. 
- Have had 3 Bouts of covid in 18 months. max 3 days positive…but hugely uncomfortable for one day.
- 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 increasingly challenging - and im afraid of being stuck somewhere for whatever reason.
- Feel like im under constant inflammatory stress And worry about the impact to my brain, heart snd general health.  stress is relieved through living as full a life as possible and learning to live with a new reality.  I believe im my own worst enemy and most of the stress is in the world of my own thoughts.  Ive discovered the condition of catastrophism and knowing im always considering worst case scenarios. 

I had my first counselling session with a clinical psychologist recently and thought its worth sharing that experience.   It was part of the government sponsored program so i wasnt sure what to expect.  an HIv specific program and a doc who speaks to many newly diagnosed with HIV.

Why did i feel the need to see a psychologist?

After i was diagnosed and left the hospital i went for my first government health checkup as an HIv patient.  They usually provide a psychologist given the traumatic nature if the diagnosis to most people.

Each doctors visit i was attended with my wife and they thought I  was dealing with things well,  with the strong support of my wife,  and a specialist doctor neither party believed any further mental health evaluation was necessary.  When i look back on this time i think i was so pumped up with anti-anxiety pils,  anti depressants,   Getting great nights sleep from a combo if  immovane,  Xanax and pregabalin that i was very positive at that time.

But that positive attitude was slowly eaten away by a combination of having weaned myself off all the drugs,  dealing with what seemed like a chronic state of inflammation (itchy & rashy flareups) And the mental burden of always wondering what ailment was going to tap me on my shoulder the next day - a fight or flight response on-a hair trigger, and having to deal with this hugely stigmatised disease.

Probably about 6 months ago i felt an overwhelming level if stress (moving countries, jobs, new everything). Feeling overwhelmed was A different sort of feeling then ive ever had before. Usually when I felt a build up of pressure or anxiety id address the cause and move on.  It always worked for me. The anxiety wouldnt last for long.  It was never overwhelming. 

But now it started feeling different.  Every little thing i would worry about.  I was catastrophizing constantly. 

One negative thought would lead to another and they would build up and id just feel overwhelmed.  Lack of sleep would add to the stress,  that stress caused Further inflammation leading to further stress.  I think about the cost of healthcare in the future,  which would lead to the struggle finding insurance, imagining  future illness,  not being able to work,  or care for my family,  being stuck in  foreign countries with poor medical care,  my life dependant in taking the meds i may not have access to at any given point in time

But more importantly i think the worst was not being able to share the experience and speak openly about what i had.  Sure my wife is by my side every day and supportive. But she cant discuss in detail the experience….the drugs,  the immune system,  the science -  the anxieties snd catastrophism I  experience.

To everyone i meet but my wife i have to bottle everything up.  And its lonely.  When i visited friends on a work trip recently everyone was openly talking  about their medical issues (we are all above 60) but i I couldnt.

When i came back from that trip and had my 3 month check up,  the doc asked how i was doing and i just started balling.  Dont know why that happened except to say its because i was so bottled up and just came out in a flood. It was also the same day i had my canadian PR interview to discuss disclosure process to my wife that is part of the PR process (they have changed that process since)

When i get that overwhelming feeling of anxiety i felt i couldnt get control over it. My solution was to take half  pill of xanax and that would help me overcome (for a fee weeks)

I decided to keep Seeing the clinical psychologist because Its great to have someone to talk to who deals with many people with this condition.

One thing he said resonated with me - he told me to imagine a book about my life.  That book would have alot of chapters in it,  but the part about HIv would be a small section at most.  Hiv patients often go into an “HIV” bubble,  a bubble they struggle to bring  oxygen into, a bubble where they lose sight of the world that defined them outside that bubble. A bubble that doesnt exist for other chronic illnesses. 

The docs goal was to help me remember who i was before HIV,  what my values were,  what defined me,  and to put the HIV stigma aside,  stop thinking of HIv as that sole thing that now defines me at the exclusion of everything else.  This had a bug impact and help with a change of attutude.

We also spoke about use of antidepressants and frankly they have since recommended I consider taking them.  I told them im not in favour of these and quite nervous about the addictive brain restructuring impact.  Their position was  people restructure the chemical electrical wiring of their brains through excessive stress,  negative thoughts,  depression -  all which can reset the foundation of mood and good consciousness.   Anti depressants combined with good  therapy can overcome that and rebuild brain foundation in a Positive way -  and then you can go off them.

So i agreed to start a course and was prescribed Pristiq.  That was a month ago and my prescription sits unopened.    The no alcohol warning is quite strong with Pristiq as is the side effect of increased blood pressure.  I just dont think i am ready to give up enjoying a good bottle of wine with friends when i feel i can manage through the bumps.  Curious what others experience with Pristiq or other anti depressants and alcohol.

So ….there is a lot of water under the bridge over the last 1.5 years

Some important learnings: 

-  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.  Many of those are no longer here.
- 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.  But this can be overcome with time and the right approach.
- The support of my wife,  my specialist, and the health care support system with caring doctors is invaluable.  Its so important i simply dont know how i would deal without it.  They have always been so much more positive about my prospects than i have been.
- The value of this site, post diagnosis, in the recovery and healing process is HUGE.

What Do I  look forward to:
- Every new day
- Living to be a grandfather
- 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 the 300 mark+
- Getting off co trimixazole.
- 2 consecutive UD test results
- Meeting someone in my current circles who has the same condition -  face to face - for a long conversation!
- Moving to a longer acting injectable - or better yet a cure. 

[Jim Allen]

Hiya,

Thanks for sharing this and the update. Glad to hear overall things continue to improve for you.

We also spoke about use of antidepressants and frankly they have since recommended I consider taking them.  I told them im not in favour of these and quite nervous about the addictive brain restructuring impact.  Their position was  people restructure the chemical electrical wiring of their brains through excessive stress,  negative thoughts,  depression -  all which can reset the foundation of mood and good consciousness.   Anti depressants combined with good  therapy can overcome that and rebuild brain foundation in a Positive way -  and then you can go off them.

So i agreed to start a course and was prescribed Pristiq.  That was a month ago and my prescription sits unopened.    The no alcohol warning is quite strong with Pristiq as is the side effect of increased blood pressure.  I just dont think i am ready to give up enjoying a good bottle of wine with friends when i feel i can manage through the bumps.  Curious what others experience with Pristiq or other anti depressants and alcohol.

I think you should talk to the doctor again and start the treatment or ask about alternative treatments. The odd bottle of wine is not worth holding back or limiting the recovery of your mental health.

Glad to hear though that you have access to support 

- I acheived UD status after 12 months but that was only once.  Its been hovering between 30 and 50 since.  I know thats a minor fluctuation but there is something wonderful about seeing “UD” on the lab report

Some labs go as low as 10 copies. I presume your current lab is 20 copies, as you mention a count measured about 30+, and labs often as 10,20,40,50,200 nowadays as a limit. Question: If you change clinics in the future, will you be chasing 10 copies? Will that mean to you that you were never UD from your point of view?

What is UD for you 1 copy? Some research labs go that low.

Your viral load is fully suppressed from a treatment and clinical standpoint. The goal is not UD on a lab report, and you are and have been UD in the sense of treatment, and the clinical goal. Not once or twice but consistently; the job is done from an ART point of view. Fully suppressed, goal and target reached.

Getting UD on a lab paper (Beating the lab test) isn't the goal of treatment and is pointless and utterly disruptive focus. Scrap the word UD out of your vocabulary; it's a toxic focus.

What Do I  look forward to:
- 2 consecutive UD test results

It's done already. Your VL is consistently fully suppressed from a treatment and clinical standpoint; you just haven't learned to accept it yet.

- Getting off co trimixazole.

That should be soon. To be honest, even if the count remains below 200, but VL is suppressed (below 200) for a year or two, many clinics are dropping the antibiotics, and you are two years in with a CD4 count above 200.

To everyone i meet but my wife i have to bottle everything up.  And its lonely.  When i visited friends on a work trip recently everyone was openly talking  about their medical issues (we are all above 60) but i I couldnt.

I am sure they have conditions they didn't tell about.

Don't get me wrong, they are all in their 60s, so they all have medical conditions and share some; it must seem open, and some issues might have been shared that you should not, but they didn't tell you about everything. Trust me, they don't share every ich, cock rot experienced or herpes flareup on their privates, and at 60 as a group, some of them have it They all have or have had something they didn't share with the group...

Privacy is a good thing; having a secret is not. Start understanding as open as people seem; they all have things they keep to themselves as it's private to them, or they feel the need to protect that part of them, and that's okay, and it's OK for you as well.

Probably about 6 months ago i felt an overwhelming level if stress (moving countries, jobs, new everything). Feeling overwhelmed was A different sort of feeling then ive ever had before.

Moving country and changing jobs is stressful at the best of times. I might have missed this but how are you finding the new job and country?

[Dogman]

I've read through your reply twice, and man did you strike a chord with me.  So many similarities, only difference is, my CD4's were high 100's, and are now high 500's and UD ( 2 years after diagnosis ). I also never had any illness associated with it - that I was aware of - in hindsight I had a couple of odd blotches on my skin, that went away literally weeks after starting treatment.

It's the mental/secrecy/self loathing side that is what still overwhelms me.  Just image, when I did my test, my DR. called two days later, rattled off my cholesterol and other biological markers, I had no STI's, and when I asked - "and the HIV", he goes "oh negative".  To my horror, the next day the clinic called inquiring when my next visit was, when I asked why, she just blurted out - oh you're positive. I spun into a hole so deep and so dark I can't tell you.

Two years on, I feel ok, all my numbers are ok, but like you I'm around friends and inside I'm churning and going over everything in my head. BUT, slowly, very slowly, I'm convincing myself, it is a just a virus, it is controlled, it is not harming me. When I stop and look, nothing has really changed, except more frequent visits to the doctor/pharmacy and one pill a day. I too travel a lot, and it weighs on me, I always take enough to cover any delays. Of course the absolute reliance and need to take the pill is like a millstone around my neck. It's thrown my retirement plans out the window, I can't move to another country now in retirement, because how am I ever going to afford the drug.
Anyway, I just wanted to say your post made me think a lot, and I wanted to say, you're not alone, and your description of your journey struck, as I said a really big chord with me. Wishing you the best.

[Tonny2]

          ojo.           Hi there!…it breaks my heart reading about stories of people having hard time dealing with this virus, it’s not an illness unless you are having OIs infections. I wish i had the wisdom to tell you something to make you feel better but I font have it, I can only tell you to hang in there, have faith and seek professional help because there is life after an HIV diagnosis…hugs to all of you from someone who has gone through a lot and i still “see” that life is good with hiv, i just remember how my brother-in-law has to check his blood sugar levels all the time he is eating while i can eat whatever i want and i don’t have to worry about anything, how lucky i’m… we are here for you!!

[Shazam9cd4]

Thanks all for your replies. 

Jim -  you always put things in clear perspective.  And your right!  Whether 10, 20, 30 or 50,  the meds are working and the virus is suppressed.  But it helps being reminded!
Interestingly - The lab i use also just raised their threshold from 20 to 30!

The move to a new country and the new role (same company) )has been challenging but we are now just  settling in and finding time to smell the roses!  I havent yet  figured out the health care system here in Canada as i literally just “landed” and joined my family.  I need to figure out how the system works, acquiring meds,  and dealing with Insurance and ultimately if that doesnt work am prepared to move back.  What i do know is meds will be much more expensive here.  I can manage for a few years or longer if push comes to shove. But returning back “home” might be in the cards.

On the anti depressants i believe i will start once i settle in for a few more weeks.  Just to add more stability.  Ill test a glass of wine with the meds i was prescribed and if this proves to be problematic ill look to switch.  I know others who seem to tolerate their antidepresants while consuming alcohol ok.   Its all very uniquely individual experience and shoild be able to find the right combination. .