Request

Dear Heppy
every time i had been down to hospital i asked them for a print out copy of my blood results and later on biopsy result, but each time either something came up, there was no time or computer was not the right one or some other excuse,
on my latest visit i asked for the records yet again and this time i'd been told i couldn't just get them, that i had to send a request in writing to hospital's freedom of information,
so today i did just that,
i asked for the whole content of my file to be forwarded to me,
the only thing i can't really understand is - why it is such a big deal to get access to something that is so fundamentally concerning my person?
i think that this kind of information should not be withheld from anyone or made difficult to obtain when their health is involved,
but that's not the kind of world we live in, is it Dear Heppy?
me

Pontius Pilat

Dear Heppy
when i wrote to you Now What? letter here's what's been happening,
i rang up kilkenny hospital to request my medical file and move on but instead i got informed that i had another visit with the consultant because he wanted to further discuss tx with me,
to me it meant that he couldn't just let it lie or go away hence a decision in my case had to be reached - either tx or not tx,
and i was ready to hang up on it all and move on - that was the boomerang that hit me in the back of my head and the rug pulled from under my feet,
i knew he would want to talk me out of it so i prepared myself as beast as i could, gathering all the crucial facts and numbers from various studies,
on the day of the visit i got seen immediately even though i was early,
dr gary had two students in with him to watch and learn,
and learn they did how certain medical professionals are able to lie and twist the facts the way it pleases them,
- i've been told that soc tx carries more risks than benefits,
- had i more liver damage i would have been treated,
- i've been told that the goal of tx for hcv is not to clear the virus, it is to stop existing damage from progressing, and what about trying to prevent the damage from happening in the first place?
- poor quality of life ie symptoms have no meaning as a point in favor of treating,
- it has been discredited that shorter 24 week duration of tx may cause as equal side effects as the longer 48 week one,
- apparently tx with addition of PI for him pushes the balance of risk vs benefits towards benefits,
- therefore again with flourish i've been offered trial tx with telaprevir in april in beaumont hospital up in dublin, but when i have pointed out that trial being double blinded and randomized i have 50% chance of actually receiving telaprevir and 50% chance of ending up on the soc tx anyway which kills logic of the whole proposition,
- i've been told that trials are highly supervised, follow strict rules and offer best care for side effects, in response i couldn't help but ask if him saying that means that patients in his regular hospital care don't receive same standard of care, attention and the rules are not as strictly followed? the subject has been changed immediately and i didn't get my answer to that question,
Dear Heppy those were only several of blunders that had been told, now onto lies
- when asked again about svr rates for tx with PIs the answer was 70%, how interesting that on first visit it was 25% and when confronted dr gary without batting an eyelid denied he ever said otherwise,
- when asked, straight up he said that he could refuse me tx and when informed that my legal source claims otherwise he got a bit flustered, i wonder why....
and finally let me share two heresies of his that amused me boundlessly,
- having low level of iron means that virus won't do any damage to the liver in the future (i have low iron hence the fairy tale),
- the earlier in life the virus has been contracted the lower the viral load becomes with time (apparently my 4.7 million means i couldn't have had you for more than a few years),
and by the end of the visit, in between the lines he let me know that irish hepC medical circle is very small and they (hepatologists) all know each other very well.... - i think something like this is called a threat,
so here Dear Heppy i give you dr gary courtney - gastroneterologist of st. luke's hospital in kilkenny, ireland, a Pontius Pilat that washed his hands off of me without a tiniest courtesy of being honest as to real reason why,
draw your own conclusions,
me

I'm Hot

Dear Heppy
thermogenically speaking i am hottest ever,
recently i started noticing that i need less layers of clothes, gloves have to come off more often and i keep the hat on only to protect my ears from the wind, otherwise it would be gone too,
and before you might suggest anything of sort - no, i am not undergoing any form of menopause,
my being cold all the time started sometime in my mid teens, i had to dress up like an onion (we're talking here 4 - 5 layers in winter), do a lot of physical activity to warm up a little and my hands and feet had always been painfully frozen,
i thought thyroid was to blame, i was even on thyroxine for a while but it didn't help,
so what happened? you might ask,
well i started taking vitamin D,
main reason was that it boosts immune system, by proxy has antiviral properties and as most recent studies show it aids in viral killing during tx, it also helps with insulin resistance and diabetes, joint and muscle pain, improves depression and reeves up thermogenic side of metabolism,
the actual list of what vit D could be helpful with is impressively long - click to see for yourself,
i'd been taking it for about five months now and its positive effects have crept up on me slowly as the deficiency was being gradually lessened, first my knees would stop hurting and i'd feel a bit of more mojo within but it had to take this long for the thermal effect to kick in and become noticeable,
contrary to previous belief high doses of vit D are not toxic, some 20-30 min in the sun produce a dose of around 10,000 IU and it's safe to take up to 5,000 IU daily without medical supervision,
it's shocking how many people are deficient in vit D, even those living in sunny places and currently recognized norm in fact is only high enough to prevent getting rickets but too low to cover for true body requirement,
vitamin D has changed my life around Dear Heppy,
it's made me feel sunny warm inside,
me

Illegal

Dear Heppy
in republic of ireland if there are no medical contraindications, hepatology consultant has no right to refuse standard treatment with pegylated interferon 2a/2b and ribavirin for hepatitis C unless there is an unstable home situation or patient is drinking alcohol or recovering from alcohol addiction,
always good to know right Dear Heppy?
me

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