Now What?

Dear Heppy
i don't usually take my words back but life is stranger than a fiction and universe works in mysterious ways,
i am seriously beginning to get scared of using the phone because of the news it has for me each time i pick up the receiver,
everything can change in a blink of an eye and whenever i think i am prepared and have all the bases covered it turns out there is yet another option that i never thought of and i end up whacked in the head with it, too dumbfounded and deorganised to know how to react or what to do about it, the moment i think i have it all figured out the carpet goes from under my feet,
i am on a roller coaster that never stops surprising me,
where will it take me now?
as always let's just countdown to it first and then we'll see,
me

Broken

Dear Heppy
i've been keeping my cards close to the chest but after what happened today i am just beyond it, i don't care anymore, i'm too tired...
you see the next day after my fiasco visit with the consultant i rang the nurses to tell them i had made my decision and wished for SOC tx,
nurse told me she would tell the consultant of my decision and informed me i would have to wait for about 3 weeks for the script for the tx drugs to come in,
i was delighted yet at the same time very anxious because i knew the consultant could put a stop to it,
well i was right, i had thought that if i didn't hear anything from them after a full week it would mean i was out of the woods, wrong!
painfully long two weeks later of me hoping and expecting prescription in the mail, i got a phone call today,
nurse informed me that consultant says he doesn't want me to go through 'suboptimal treatment' and advises me to wait for PIs to come out, i replied that despite that i still wish for SOC tx,
she said in that case there's nothing more she could do and i have to talk to him personally and that he would ring me today or tomorrow,
well he didn't ring me today, possibly won't ring me tomorrow either,
i give him till friday,
if i don't hear anything by then i'm gonna ring up one last time and ask for my medical file to be sent to myself or my GP because i've had enough of that circus,
i've wasted 7 months for worrying and waiting every single day - all for nothing,
i want to move on with my life, forget about hepatitis and live as if it never happened for another 10 years or so and maybe by then you will manage to do some noticeable damage that medical world will recognize as worthy any effort or attention and maybe by then there will be non INF treatments available,
or maybe we are bound to be together forever?
i don't hate you Dear Heppy, it's none of your fault, you are what you are,
it's humans i hate,
i hate them more than ever before,
they are worse than any virus and sometimes i think they deserve to extinct,
me

Money Talks

Dear Heppy
if i had a business to run i would make sure to take the best care of it,
i would put its interest in front of anything else, i wouldn't jeopardize it by being weak and soft hearted, money world is ruthless and cruel, only strong, shrewd and sensible survive, especially when recession is on the lose and budget cuts strike time after time,
if like my consultant i were director of the hospital, concerned with its financial well being and therefore its future of functioning, i wouldn't grant myself circa 20K euro hcv tx with no liver damage to show for it either, so i fully understand where he was coming from because i would've done the same if i were him, just at the time i couldn't see this clearly and couldn't see what his motive for lies and deception had been, now it all makes perfect sense though, because a number of little details didn't add up for me and it allowed me to see through very clever illusion,
like a detective i went through all the facts and found enough evidence to prove him guilty of the crime,
as a director he runs the whole performance and his hospital is spotless, modern and breathtaking,
his staff is professional, competent and outstandingly caring and friendly,
his tx nurses independently of one another have been consistent with answers to my questions and especially a few times they mentioned things of their own accord that are spot on when it comes to how tx protocol should be carried out which had been the main reason for my decision to go with this team and not any other,
a consultant that is a mentor to a group of nurses that are highly well informed on hcv tx cannot be as misinformed about the svr numbers as he had presented,
a consultant that is a chairman of the hepatitis consultative council cannot really believe that gender, age and health are not viable factors to svr rate
a consultant that runs a bloody good hospital has to have his head well screwed on, has to be quick thinking, has to be a very good specialist and has to be able to prioritize because we live in cruel times,
if i could pay for tx out of my own pocket that visit would have gone completely opposite way but because i can't he was hoping he could deter me and wouldn't have to put me on the bill, that he would later have to explain himself about,
i feel sorry for him that he has to make those kind of decisions because i know if he could he would want to help everyone that comes to see him,
he wouldn't have sent me 1st appointment letter in the first place if he didn't,
that's why Dear Heppy i want him to tx me, because i know in his care i would have the best chances to get rid of you
me

WTF

Dear Heppy
imagine me sitting at the desk, but it's not mine, it's his desk and he's on the other side looking at me with a question mark in his eyes, i don't know why he's looking at me like that, i thought he looked into file before i came in and knew why i was there, but he is a very clever and quick thinking man you know, he notices my bx results bookmarked, looks at them, it's F0, to him it's case closed, i can go home and come back in 5 years for another bx, no word of monitoring LFTs or AFP, simply go and be happy,
'but i want tx' i say,
a wrinkle on his forehead forms,
'are you aware of side effects? like flu, depression...' he starts listing,
'joint pains, nausea, brain fog, rash...' i've joined in rattling away but he cuts me off,
'so you are aware' and dives back into file to look for a different strategy,
he asks me if i'm working, i am not and i would like to use this time to tx before i go looking for work, he says tx is not an excuse, people work and study while on tx, students pass their exams,
well i know some people are lucky enough to be able to work but i am truly impressed by the students who pass their exams, especially that he starts painting a very bleak picture of how tx really is, side effects very bad, actually his last case got such terrible sides he felt worse after than before he started and on top of that he relapsed, oh yes i know that can happen, but that's the risk of it, he couldn't believe why i would want to put myself through it all with undamaged liver so he continued to discourage me, i knew that's what he was trying to do but i didn't understand why...
when he realized that his rationale tactic wasn't winning he changed the approach and started throwing numbers at me, shockingly wrong and low numbers for svr, i couldn't believe a man of his caliber with up to date team of tx nurses can be so wrong on numbers, the bells in my head had been ringing and i couldn't think straight any longer, i didn't call him on those numbers too shocked at what i was hearing and he thought i was buying it because i didn't say anything back, weakly i tried to contest those revelations that my gender, age, F0, BMI and general good health increase those numbers up, when i heard 'actually NO, with genotype 1b being the hardest to treat it doesn't make any difference', i couldn't believe what i was hearing, all the blocks and foundations of my knowledge started to crack and fall apart at this stage, a specialist is telling me that all i had known was NOT true?? i couldn't believe it!
after this bombarding he went on to ask the question again if i agree to leave his office with nothing,
but i still wanted tx even though my heart dropped to a knee level, i told him that i'd rather SOC now than wait for PIs because it is not fully known yet if virus resistance is reversible and with missing a dose or two on tx this is a big issue, plus after it's released for a while docs will need time to get the hang of it and i don't want to be a laboratory mouse for their mistakes, that's when he came up with the trial idea, but again numbers had been wrong and suddenly the side effects were no longer an issue, even though it's the very same thing with only one more drug added, confusion in my head persisted fed by his clever conundrums, he kept at this so fiercely, so skillfully that he wore me down, i could no longer give him decisive answer because he tore me inside between two options i never got myself ready to be faced with, i only knew that if i walked out of that office without decision i would've lost and i did, the last thing i heard from him was 'i can't refuse you tx, but you are smart and soc would be a stupid idea, go home and think about it, and when you know what you want to do ring my nurse'
and go home i did,
i cried an ocean of tears,
then i still couldn't agree with anything he said, i knew he was lying to me and didn't want me to tx but i couldn't figure why,
i was in a very very bad, dark, desperate and angry place,
but finally when emotions have settled, my logic returned and dissection of all the minute details took place a clear picture of what really had happened back in that office revealed itself,
the smoke evaporated and mirrors have crashed fully presenting what they were meant to hide,
but Dear Heppy i'll tell you about that in my next letter,
me

No Worries

Dear Heppy
yes i know i've been sneaky but i didn't want to jinx anything by revealing anything before it took place so i kept quiet but i can tell you now that i've finally got to get my visit with the consultant,
i got to learn the results of the liver biopsy for which i had to wait for 3 months,
was it good result?
yes and no:
YES because it turns out that my liver has no scarring whatsoever, there's only portal inflammation which is to be expected with your presence,
'it's a miracle!' i should have screamed, jumped up and rejoiced in front of the consultant, happy tears streaming down my eyes and making his day that he had another easy case patient,
but i didn't, because i couldn't believe my luck,
i couldn't believe that after 30 years you would have managed not to trigger immunological response in a form of sacrificial damage to the environment that sustains you, that actually it seems like you have worked out some sort of silent truce with immune system police and that you both coexist in peace each going about your own business without animosity, i never dared to take for granted that the german study on natural history of hcv in very young children that i wrote to you about earlier would actually apply to me,
but not only that, since early 20s for about 10+ years there had not been a day that would have gone without a bottle of alcohol in whatever form, dried to the bottom in the evening or night because sober and lonely life was not a happy party and yet it left no mark on the liver - that makes me wonder...
how is that possible??
so i sat there silent and in shock, unable to take in that this organ i never realized had been so crucial to sustain life and well being resisted everything i dished out at it with additional weight of your quiet presence and came out totally unscathed...
and here comes the flip side why it was
NOT a good result - because healthy livers with 0 fibrosis don't get treated, only cruelly lied to...
but i'll tell you about this in my next letter
me

Xmas Present

Dear Heppy
for christmas i got the letter with appointment date,
as i'm superstitious and don't want to jinx it again, all i will say is it's in january,
i won't relax and believe it's going to happen until after it actually happens,
because anything could happen anytime beforehand,
nothing's ever granted you see,
prepared for the worst but hoping for the best,
me

Time Is Now

Dear Heppy
a few days ago i realized something,
something that's been escaping me because i had been so busy with being impatient,
when (hopefully) i am on tx my brain more than likely may turn into a mush that won't have capacity to hold concentration on anything for longer than a single minute if not only a score of seconds so all the things that i'd been so confident about doing are not guaranteed at all, in fact may not happen altogether for a year plus, so i got a rush, a huge rush to do as much as i can with my brain before it goes completely vegetarian,
now i'm busy with things that i used to be busy with before you turned my life upside down and entirely took over,
for the time being i have no minute to waste on you,
actually truth be told i shouldn't have wasted as much as i have and it had to take me six months to come to this simple conclusion, but well 'you live and learn' as they say, so i did
i don't think you 24/7 no more
i don't breathe you 24/7 no more
i don't fear you 24/7 no more
i don't talk to you 24/7 no more
i don't talk about you 24/7 no more
you're no longer the only passenger on merry-go-round of my mind spinning time after time in a fixed circle,
waiting is a state of mind - a euphemism for wasting time that's been given to us to use, because every minute that passes is unique, precious and can't be ever recovered,
if i were standing in front of st peter telling me to enter the afterlife realm i'd argue i haven't done everything i wanted to,
and he'd be correct if he told me 'but you had enough of time! you wasted most of it so why should you get more if you don't know what to do with it?'
i'm still not sure if i'm using my time in the best way i could but at least i'm not wasting it for waiting,
what is to be will come regardless
the tables have turned Dear Heppy and now you have to wait
wait for...
...me

Changing Direction

Dear Heppy
yesterday i continued being devastated,
sometimes some things are hard to accept especially when a mistake of allowing oneself to have expectation(s) is made,
i made that mistake and i was paying heavily for it so obviously i fully deserved it,
at the time it was hard to put this disappointment into a context of chain of events so i was full of anger and pain...
in life there are always only two options - give up or regroup and go on,
turns out i am a survivor after all and sooner or later pick myself up,
'the war is won in the heart' - i'd say it's more a mind thing but that's only semantics, truth stays the same regardless of the term used,
what is the solution then?
finding something positive and delayed tx brings a few things about like:
- i could be starting tx along with John and Archer in february or march,
- i will have even more time to get in better shape,
- i will be able to read, watch and play for longer before i'd lose brains to tx fog,
long term protection scheme is also being put in place which involves refocusing, removing myself from intense hcv related mainstream and focusing on some other parts of life that had used to be primary before i found out about you and everything went upside down,
i still will be waiting, countdown won't ever stop but it won't be everything to me anymore, i won't let you win by getting me down,
if the war is won in the heart well then Dear Heppy you've already lost it,
me

Snow

Dear Heppy
i guess you're gonna laugh your little viral ass off when i tell you what just happened today,
on 6 o'clock news they announced that outpatient clinic of st luke's hospital in kilkenny will be closed tomorrow and all the outpatient visits will be canceled,
quite disturbed by that information i rang the hospital and the lady i spoke to hadn't heard of this although i had been a 3rd person already asking her about it,
thank god she asked me for my number so she could ring me back, and she did 15 minutes later to say that she spoke to general director of the hospital who confirmed that indeed what they said on the national news was in fact true,
as you can imagine i went into convulsive shock straight away, infuriated with the way it had all happened, with the irony of my appointment getting canceled just day before and finding out about it just by pure fluke of luck - simply unbelievable!
if not for that though, i would've gone there tomorrow only to kiss the closed door and in result go on a killing spree claiming lives of at least a few innocents who would have happened to be too near me,
right now i just don't know if to laugh or cry....
so countdown as ever continues never quite reaching zero...
again another two, maybe three weeks till that elusive appointment? or maybe until after christmas??
i'm sure you're loving it Dear Heppy and having a ball of a lifetime
well enjoy then for as long as you can
because it's just a matter of time....
me

Lucky Friday

Dear Heppy
hospital got very lucky because today i was meant to ring and chase them up about my appointment but there was no need,
today the mailbox has been very kind to me and handed over the appointment letter i had been waiting for so much,
the original date of 25th november had been crossed out and another one of 2nd of december has been hand written next to it, but that's ok it's already less than two weeks from now,
i am very excited but also increasingly anxious,
as long as i have been suspended in the limbo i had taken a sort of mental holiday but now that things are about to make another leap i am going back in the gear of mobilization and preparation for the pinnacle of the action as this will be the day when i finally find out whether i will be granted tx or not and i need to be ready to argue for it in case obtaining it won't be straightforward
it will be the last obstacle that stands between me and you Dear Heppy
the suspense is fully back on
and countdown continues
me

Doctor Holiday

Dear Heppy
as told by nurse specialist at the day of my biopsy i'd been waiting for three weeks
every day i'd go to the post box with renewed hope to find a letter from kilkenny hospital addressed to me,
i would have been most hopeful on mondays because maybe the letter was supposed to be just in but it got stuck on friday to have a weekend break,
then fridays had been the worst especially if the box was totally empty because then i knew i'd have to wait till monday again...
finally long three weeks had passed and i picked up the phone receiver to remind them about my existence,
i spoke with nurse no1 - noreen,
good news is they didn't forget about me, i didn't get lost in the system or brushed aside or put on hold,
another good thing is that each biopsy result has to be authorised by two pathologists, it means they are aware that singular evaluation may become flawed due to subjective nature of scoring system and they want to avoid that therefore two heads are better than one and are more able to come up with middle ground closer to factual state of things,
but the bad news is one of those pathologic heads is currently on holidays that's why my results are still not in as they're pending for second authorisation,
noreen was unable to tell me when the results could be expected but to soften the blow she told me my appointment with consultant is scheduled for 25th of november and i will be receiving confirmation in the post,
oh Dear Heppy this was the bit of news i was really waiting for all this time, a bit miffed it's nearly all 24 long days away but very happy to have concrete date to countdown to!
i couldn't help being cunning too because i asked if i'd be seeing the consultant at the hepatology unit or in the outpatient clinic - noreen confirmed the latter which means upon arrival at the reception i will be issued my file to carry upstairs and then i will be able to complete my unfinished work and take pictures of my remaining blood results, the chance i had been so brutally deprived of at the day of my biopsy,
so we have had another little leap forward Dear Heppy,
now again there's nothing else to do but wait,
can you feel that silent excited tension slowly building up?
we are getting closer to the day of truth when future of our lives will be decided,
can't wait!
me
ps. the voting for bx results poll has been prolonged until 2nd of dec

Waiting

Dear Heppy
sorry i haven't been writing lately but still there's no news of any kind to break,
it's been more than 2 weeks now since my biopsy and so far i haven't heard anything from hospital yet,
if i don't get a phone call or a letter by next wednesday i'll get in contact with them myself to find out what the story is and then i'll let you know,
on one hand days are busy and filled with various activities but on the other when i do mental checks on calendar, dates seem to be shifting very slowly, very strange thing that time relativity and waiting,
waiting...
waiting can be truly tiring and exhausting,
and i don't wait as much for what my results are but for the results themselves because they are my ticket to a consultation visit and what i'm waiting for most is to find out if i am going to have treatment or not as i will not relax about it until i know for certain
i want to know if our blood sport tournament is going to be on
me

Interactive Games

Dear Heppy
i thought it a funny idea to get a bit playful and to make a poll on what my liver biopsy result score is going to be
since i've no idea how long you really have been with me then i don't know how much damage you may have done
i've been drinking heavily for more than good 5 years in total - we're talking a bottle of wine, martini or vodka every evening for months on end
total extensive alcohol use would be roughly 10 years altogether
what else have we got?
about 25 years of binge eating with huge overdose of sugar and sweets of all sorts
about 23 years of being overweight, of which 3 obese
god only knows how i managed to avoid diabetes for so long
on the other hand my bloods are very good, LFTs within norm, ultrasound says liver is ok and not inflamed
so it's really a tough call, a big unknown, it could be anything
the more fun it would be to play a bit of liver bx lotto - wouldn't it?
is my liver going to be unscathed after all the abuse?
is all that i've done to it and what you've done to it had effect and is slowly destroying it?
or is it already too late and the damage is done beyond point of return?
let's find out Dear Heppy shall we?
let's see what others think
may the fun begin! - vote casting machine is available on the right side bar till the end of october
happy voting!
me

Poke'mon Liver

Dear Heppy
last wednesday i have had my liver biopsy done,
i was admitted into day ward at 9am,
around 9.30 i was seen by a young doctor who explained the procedure  to me once again along with possible risks, she answered a few of my questions, i signed consent form and she fitted me with a cannula,
a bit after 10am i was changed into hospital gown, given 10mg valium and ushered downstairs to x-ray department,
valium did its trick and i snoozed away on the corridor while waiting for biopsy,
i don't know how long i slept for, possibly more than 30 mins,
nurse specialist no2 came to wake me up and to wheel me in,
i was in good spirit and found it very comforting that the nurse and the radiologist had been chatting in a relaxed way about their respective families as if they were best friends, maybe they were and for some reason i found it mesmerising just listening to them chirping away while i watched radiologist putting the gown and gloves on and preparing instruments,
with expertise she quickly located my liver with ultrasound machine, placed the X mark and loaded up syringe with anesthetic,
that was the bit i was most afraid of but the nurse skillfully distracted me with questions about our dogs, no idea how she knew it was the best topic she could've picked but of course it worked,
i could feel something going on at the side of my ribcage but being unable to concentrate on two things at the same time and doped up with valium i had to direct all my mental forces towards the conversation, so much so i didn't even register when the actual biopsy took place, i made it just to see radiologist emptying the big needle into plastic container and register time on the clock - 11:10am
almost instantly i started feeling pain creeping into my right shoulder and in the side, it slowly grew from noticeable to very annoying and uncomfortable,
thankfully i was given a shot to kill the pain and i drifted off to sleep,
for the first hour my blood pressure was taken every 15 min, then every 30 min and finally on hourly basis,
2hrs after biopsy at 1.30pm i was given a small cup of water, i thought i would throw myself at it after hours of not being allowed to drink anything but i was fine enough only to sip a little bit,
after another 2hrs at 3.30pm i'd been given a sandwich with tea and allowed to get up to use the bathroom,
the pain has returned but it was nothing as it had been in the beginning and there was no need for more painkillers,
at 6.30pm the doctor came back to see me and officially discharge me,
they were very happy with my recovery and so was i with care that i'd been given,
everyone was extremely nice, patient and kind to me, i couldn't thank them all enough,
on that wednesday morning i walked in there terrified and wringing my wrists with anxiety but i walked out of there in the evening relaxed and happy with wonderful experience and memory of exciting adventure that it had been,
i was told results would be in around 2 - 3 weeks either given on the phone or explained at the visit with the consultant,
i'm not afraid anymore
i'm not even impatient for the results
all i can think of is the next step - meeting up with the consultant and if he agrees to release the weapons to me so i could use them against you Dear Heppy,
currently, apart from winning lotto, there's nothing more i would love to get in my life than this
me

Scar Tissue

Dear Heppy
my upcoming biopsy is meant to reveal how much damage you've made within my liver,
but technically it's a false statement which has been a shock for me to discover a while back,
it's not you who kills off liver - it's the very own immune system that does it,
regardless if you leave liver cells after replication by bursting membranes or by sliding out the attacked cells push their panic buttons calling for help,
cytokines like police squad arrive to asses the situation then call on for anti-terrorist reinforcements of leukocytes which in turn like a proper squad would, for the safety of all civilians they request to block off the affected sector and this job is done by liver's local stellate cells that lay down layers of collagen to separate the attacked cluster of cells from other healthy ones,
that very collagen is the essence of fibrosis,
it cuts off everything not to let contamination get out but it also prevents delivery of oxygen and nutrients from getting in,
the collagen cocooned cells are sentenced to death by starvation and suffocation for the benefit and safety of everyone else in the liver,
it wouldn't be that bad but this process is constant, never ending, never stopping, slowly there are more cut off dead and dying cells than there are new ones being produced or collagen removed once state of high alert is called off,
bit by bit damage overcomes regeneration rate,
it takes years, many years - at least 20 on average, sometimes even much more before fibrosis turns into cirrhosis - a scarring so severe it's beyond amazing ability of liver to repair itself but still it is able to function even if only 10% of its original capacity remains but when that goes as well then only liver transplant option remains...
so the truth is you are not as vicious Dear Heppy, you don't mean to damage anything intentionally, like a parasite you just want to hijack a bit of this and that to make your life more prosperous but even though you do your best to be as quiet about it as possible you do trigger alarm bells and immune system in its being thorough and zealous over reacts in the use of protective measures causing damage to its own master and draws all attention and finger of accusation towards you,
if it wasn't for that little detail Dear Heppy maybe you could have a chance for living in symbiosis just like other 'good bacteria' do but you haven't perfected it yet and for that reason i'm afraid you have to go,
i'm sorry but even though it's not your fault directly, you have to be cut out so my own immune system didn't cut off my liver
it's gotta be one or the other - unfortunately there can be no compromise
me