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  • - This is the stub blog to redirect hcvadvocate.blogspot.com to the new blog with the untainted name of HepatitisCAdvocate.blogspot.com.
    9 years ago

Thursday, August 26, 2010

Recipe

Dear Heppy
a couple weeks back one Nomad asked me how i'm dealing with it (meaning you)
so i've been thinking on what it is that i do to deal with you
the recipe consists of a few ingredients
a pinch of denial - as in not allowing myself to fully realize the scope of things as it may become too overwhelming, it's more like being a spectator in a cinema watching a horror movie while munching on popcorn and sipping coke (both not advisable if infected with you)
buckets of knowledge and information - most crucial ingredient required for the concoction to be successful, hours of daily poring through information, studies, research papers, forum posts, blogs and it's still not enough, the more the better, because information is a powerful tool and weapon against you and a huge soothing tranquilizer for the mind too
daily load of acceptance - kicking up tantrums styled on 'why me?', 'why now?', 'why you?' are not in any way constructive, this is what it is, sitting and feeling sorry for myself won't solve anything, neither sweeping under the carpet would make anything go away, as they say 'shit happens', you are the cards that i've been dealt with so might as well play them as best as i can, everyone dies - each new day could be the last anyway so why worry? at least you are slow unlike cancer and you give your opponents lots of time for the fight, which i think is very nice of you as things could have been so much worse
constant supply of hope - life without hope is nothing, without it might as well pick a coffin and lay in it, as long as there's hope there's future
heaps of humour - laughter and jokes make dint in seriousness, raise endorphins, strengthen immune system and make life sweeter and happier
a ton of Nomadic support - nobody understands you better then those who have or have had you
that's all it takes to be able to get up each day, to move on and be ready to look into the future and whatever it may bring
there are of course dark days, anxiety days, rough days, crap days, sad days, good days, fantastic days and happy days, but that's nothing different from the days that life serves anyway, the only difference is you truly spice it up, magnify it, enhance it, give it an edge, give it a purpose and grace it with appreciation of how beautiful it can be even when things get very murky
why? because nothing lasts for ever Dear Heppy, neither will you even if it means over my dead body
me

Monday, August 23, 2010

D-Day

Dear Heppy
so far in my experience when it comes to you there's never anything more memorable than diagnosis day, dx day, d-day
the day the news about you got broken, the day when your silent presence got exposed, the day when the whole life went crashing down like WTC towers, the day from which nothing is ever going to be the same
it was 9am when i received the phone call from the gyno doc, i was still very groggy, i am never up so early, so i didn't register nearly three quarters of what had been said to me, all i could hear were fragmentary words coming from somewhere afar .....hcv.. test.. positive........hepatitis C.......contact doctor asap........further testing...........you should be put on national registry of people with infectious diseases... national registry of people with infectious diseases!??! that bit woke me up completely and then i really started listening to what had been said to me - i was told where to go and whom to contact for further testing
mother knew something was brewing up so i told her 'hepatitis C?' she broke down in tears, i felt dumb, all i knew about hepatitis was it's when people go yellow
i reached for my laptop lying 2 feet away and googled, started reading, the more i read the less i was understanding and only single words were jumping out at me from the body of text no vaccine, cirrhosis, liver failure, cancer, ascites, varices, hepatic encephalopathy, coma, DEATH
......shock, an utter indescribable shock
it felt as a sort of weird imploding inner explosion, like on a slow mo scientific footage when the air gets sucked in and all goes very quiet and very still before everything goes suddenly boom and chaos follows
from that moments i have only singular pictures in memory of mother crying, me numb on the floor uncomprehending, rays of morning sun cheerfully coming in through the window, particles of dust dancing in the air, laptop screen with hcv...and then after that suspension in nothingness everything sprang to life on a double speed
on the outside i was absolutely calm as if nothing had happened so what was the whole drama about but inside my head i wanted to fold, curl up and sob, scream and run all at the same time - an absolute inner panic i was going to die and very soon at that
i got dressed and went with mother to the laboratory i had been told about, everything around me was so surreal, sunny day, people and traffic on the streets - unbelievable
i was there walking on an auto pilot while all i could register was a pulse of the blood pumping the death in my veins each second, i was saying good byes to everything i knew, i was saying good byes to myself and everyone i cared about, that was it for me
but you know Dear Heppy what jump started me back?
the most simple thing of all - i got hungry
if the most basic yet most powerful of instincts prevailed it meant it couldn't have been that bad, it made me realize that life goes on and will go on regardless, mine and everyone elses, the world won't stop turning and that's when i regained my capability of functioning and thinking again
back on that day i have truly died for a little while and got reborn to a new completely different life
a life with you Dear Heppy and i can vaguely remember there had been another me from before but from that day on i can't think of my life with you not ever being in it
and even if one day you'd be gone my life would still remain changed for ever
you are so so tiny, yet so powerful
my hat's off to you Dear Heppy
me

Wednesday, August 18, 2010

Chain of Events

Dear Heppy
do you believe that all things happen for a reason?
i do
sometimes things that happen don't seem to be good at first but as the time goes and more things happen in follow up then the previous ones only become positive and make sense in retrospective
it has happened to me so many times that although sometimes i may moan about the current situation in the end i know somewhere deep down this is all happening for the best or for a better reason
that's what happened with you Dear Heppy and it's been the most amazing chain of events ever
if i had no PCOS i wouldn't have thought i was feeling bad for any other reason than that
if i hadn't been feeling bad i wouldn't have gone to a doctor while i was visiting my mother abroad
if i hadn't have gone to a doctor i wouldn't have had an ultrasound of ovaries
if i hadn't have had the ultrasound a large cyst wouldn't have been discovered
if it hadn't been discovered i wouldn't have been referred to a gynecologist in ireland once back home
if i hadn't been referred i wouldn't have gone only to have a chat with her and no follow up to my cyst
if i had had the follow up i would've found out that the cyst had spontaneously reabsorbed
if i had found that out i wouldn't have gone back to my mother's with intention of surgical removal of the cyst
if i wouldn't have gone thinking the cyst had been still there i wouldn't have had all the standard pre-op blood tests done
if i hadn't have them done i wouldn't have hcv antibody test done
if the hcv test result had been ready before the time i had the appointment with the gyno i wouldn't have understood its importance
if that hcv test hadn't been faxed over to the gyno's office once the results had been ready the doctor wouldn't have called me next day in the morning to tell me my hcv antibodies had been positive and what it meant
if she hadn't rang me and told me who to go to next i wouldn't have known what to do myself
if the microbiologist who i was referred by the gyno doc to had run the once a week PCR test on monday as he usually did i wouldn't have had my viral load test result 2 days later
if i hadn't that result i wouldn't have gone to have liver function tests and ultrasound done
if i hadn't have had them done i wouldn't have had anything to go with to a consultation with a hepatologist
if i hadn't gone to the hepatologist i wouldn't have known where i stood with you at all and wouldn't have been advised to test for hep A&B antibodies
if i hadn't tested for them i wouldn't have known if i should vaccinate
if i didn't know if to vaccinate i wouldn't have started the 3 round vaccination course there and then
back in ireland if i hadn't all those results i wouldn't have been referred to an irish hepatologist
if i had not been unemployed i couldn't have applied for medical card
if i had not got a note about my hcv from my GP to social welfare officer i wouldn't have gotten the full medical cover due to nature of how system in here works
if i hadn't been granted full medical card i wouldn't be able to afford treatment
if i wouldn't be able to afford treatment there would've been nothing i could do about you
if i couldn't do anything about you i could've ended up with serious health complications, liver damage, maybe cirrhosis, in result liver failure and death
if so many things hadn't have happened in this mind blowing synchronization as they had i wouldn't have been where i am now
waiting for another link of the chain to add to this string
and also if you never have happened to me i wouldn't have been able to wake up and come to appreciate every single moment of my life and for that i thank you Dear Heppy
me

Saturday, August 14, 2010

Grudge

Dear Heppy
please have a look at this picture
it's a beautiful day out in the mountains, the air is warm and rich with smell of wild grasses and flowers carried by gentle breeze
my father went to a grocery store and my mother is hanging the washing on the line while i am practicing walking in the kitchenette of a holiday camp cottage
at 18 months of age it's quite a challenge not to lose balance often and again i have as my pudgy legs got tangled, in attempt to prevent the fall i grabbed for a cable of an electric heater and along with it pulled down a 5 liter pot of hot boiling water onto myself
the ambulance siren is howling terribly as it rushes me to the nearest hospital, they're trying to take off my clothes and the skin peels off stuck to the fabric as they go
there's a huge rush around me as lots of people frantically are trying to stabilize me, they look for the vein to put the blood drip in but all the normally used veins are too tiny so they finally hook into a vein on my head
it worked
i survived
i recovered
i have not a smallest scar left as a reminder
i was very lucky
i cannot possibly remember any of this but i've heard recall of the events enough times to fill in the gap with vivid pictures that substitute those real memories that are missing
studies claim only about 20% of children who received HCV tainted blood transfusion become infected, out of which about 80% develop chronic hepatitis C
german study on early natural history of HCV in children shows that grand majority of younger subjects exhibit slower progression of disease ie liver damage over the years but the minority is faced with aggressive progression resulting in liver failure since infection even in as little as 5 - 10 years
maybe it was then Dear Heppy when our paths have crossed and entwined together to create a new thread of fate and destiny for both of us
i like to believe that's when it was
33 years together
so can i rely on results of that german study and believe that my liver is as not damaged as it normally could've been because of all the alcohol that i had drunk and sugar i had consumed?
i don't want to bet on it but nevertheless i keep it as a little token of hope
and do i feel any grudge because of what had happened?
do i blame the anonymous blood donor who out of goodness of their heart gave their blood away to save my life?
do i blame the doctors or hospital for giving it to me?
no
there's no grudge, because they couldn't have known about you lurking about, they had no means of detecting you back then, they did as best as they could and thanks to them i am here now to tell this story and write next chapters of it
will it have a happy ending?
i don't know only time will tell
but if at any stage you won't be there to see for yourself anymore be sure you will be there somewhere in my memory
me

Wednesday, August 11, 2010

Origins

Dear Heppy
how did it all begin?
can you remember when and how even yourself?
thus a single copy of you lives for only 2 - 3 hours and we're looking at years here so it must've been many many generations for you ago!
do you carry memory of those things anywhere?
or at present you're as clueless as i am and the story of origins is a mere legend to you whispered down through the generations of RNA replication?
in the very beginning i wanted to know, not how, but when to know how long you have been doing your underground activities for...
the trouble with you Dear Heppy is that liver function tests within norm don't mean my liver is not damaged, the number on viral load test doesn't co-relate with how long you've been occupying my body, the symptoms i experience courtesy of you don't indicate what you have been really up to either
you're one great mystery lurking in every single drop of my blood
so all i was left with was guessing
- it may have been my dragon tattoo even though done at the respectable studio still studies show that even if all the accessories are properly sterilized you can survive and migrate through ink if tattoo artist reuses the bottle instead of opening a brand new one for each client
- it may have happened so many times at various dentists and especially one that sticks out in my mind when there was no disposable syringes at the time yet
- it may have happened on either of my two eye surgeries when i was 10 and people only knew of non hepA or B virus at the time
- it very likely could have been through life saving blood transfusion i received in my infancy a tad more than 30 years ago, before anyone on this planet had any idea about you
you could ask why i bother breaking my head about it, well this is what i am like - i'd like to know how long you have been my silent companion to try to predict how much damage you could have inflicted on me and i like to believe for myself we've been together for nearly all my life, not that it really makes much difference because if and when i will have liver biopsy done i will get to see how robust in causing anarchy at cellular level your population has been
and even biopsy result wouldn't tell how long you may have been my unwelcome guest for, but then it really won't matter because i won't have to be guessing anymore, i will know for certain what kind of heritage i've acquired from your Heppy civilization, then the past can be let go and story of origins will become only a mere bedtime tale
but until then i need a crutch, a mental anchor of my battle ship dropped deep down into past to keep me steady on the surface if the result comes back unfavorable and hits me hard like a tsunami and i need to stay afloat to be able to fire my cannons at you with full strength when the time comes
me

Friday, August 6, 2010

Enter the Dragon

Dear Heppy
for some reason HepC people call you dragon
dragons are magnificent and beautiful creatures and i can't seem to be able to see you in depreciating light because of that mental picture that i have
they often use phrase 'slaying the dragon' and it makes me cringe because it sounds so demeaning, so disrespectful as if they were chopping up a mere cow at a slaughter house
as a dragon that you are you deserve respect and a proper evaluation of your true potential such as
fierceness - you replicate and mutate with amazing speed
jealousy - liver is your treasure and you guard it with all your strength
resilience - you can survive for a very long time in adverse environment
greediness - you devour and destroy cells blindly not thinking one day the hand that's feeding you might run out of resources bringing you doom in result
vanity - you think only of yourself and your well being
arrogance - you laugh in the face of humans and their attempts to eradicate you
beauty - you are state of the art, so tiny, so powerful, so efficient, so simple yet so dangerous
can't help but admire and respect you but that's where it ends
see that tattoo on my shoulder?
it's a sign of a dragon as i'm a dragon myself
born in its year with double fire aspect
i too am fierce - i will fight till the last drop
jealous - i don't like sharing what's mine with others
resilient - whatever doesn't kill me makes me stronger
greedy - the less of you the better
vain - i deserve my freedom
arrogant - i like to think your own arrogance will be your downfall
beautiful - as a human i am state of the art too, so big, so powerful, so efficient, so complicated yet so dangerous
so as you can see we've exactly the same qualities that make us equal
a dragon against a dragon
most spectacular fight of all times
can't wait!
me

Wednesday, August 4, 2010

1st countdown begins

Dear Heppy
today my first countdown begins - 90 days till my 1st appointment with a specialist at hepatology unit at st james's hospital in dublin
i'm very happy about that appointment because finally i'll be able (i hope) to ask all my questions from the list i've started writing down a while ago
i want to find out if they would treat me, if i need to have liver biopsy, how long i'd have to wait for the start, what other specialists i'd have to see for the assessment, what is their protocol regarding treatment, if they offer rescue drugs should my bloods fall and many other details depending on what would first answers be
at the same time i'm very anxious about that visit, i don't know what to expect, although i've already tried to gather some early intel so far i had no success in obtaining any valuable information so i'll be going in to a complete darkness armed with only a few matches of knowledge i so desperately collect on the hepC forum
i'm unable to put aside my reservations dictated by logical part of my mind, i've always been like that, trying to know before something happens and not being able to find out extremely irritates me but on the other hand spiritual part of my mind makes me full of hope because so far everything that happened leading to where i am now has been orchestrated from above and i trust it will continue, because i do believe everything happens for a reason and no matter how hard i'd try to change the inevitable or fear it, it will happen anyway because it has something in it for me to experience and learn from
i trust the universe and even though sometimes it's so hard to let go of control, today i'm in a good place and my heart is full of hope that whatever happens it's gonna be fine
me

Tuesday, August 3, 2010

Dear Heppy

it's so strange to be writing to my own enemy but as Sun-Tzu said - keep your friends close but enemies closer...
so let's get to know each other better
well by now you know me well enough anyway, you've been a secret agent working undercover for a good while haven't you? how long is it now 30 years? sure you have a lot of experience and intel on me, you've made yourself very comfy haven't you?
i suppose you never thought your identity would get discovered but it did, yet only two months ago
you've had long years to do your thing while i've only started getting to know you very recently
in a way i understand this is your job and you simply do what you are meant to do - find a host, settle in their liver and replicate, that's only natural thing to do, everyone wants to live, prosper and continue on through populating so i don't blame you at all
i don't even feel any grudge towards getting you because you came in a blood that had saved my life years ago but the problem is although our goals are the same you stand in the way of my well being
you might ask what gives me the right to wish upon your demise, thus god created everything equal right? but it's also way of nature for species to compete for survival and that's what i need to do, fight for my right to live on
you're tough buddy in your own right anyway even though you're so tiny tiny yet this and your numbers are your strengths so i'd say this confrontation is fairly equal and you shouldn't complain as you got a good headstart anyway and i need to work hard to catch up with my own preparations for the battle against you
it's going to be a long campaign
a very long countdown consisting of series of smaller countdowns towards each goal or mile stone that will mark my moving closer to trying myself against you
we both have chances of winning or losing at the end of it
let's begin then shall we?
may the best win
me