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