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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.
    2 years ago

Saturday, April 9, 2011

Results

Dear Heppy,
yesterday i have collected my blood test results.
hb, plats, neuts etc; are all nicely within the norm.
thyroid is in the norm as well.
in lipid panel, HDL is raised double the norm but the rest is fine--i will have a search to find out what that means, and if i should worry.
glucose has gone down even more, which delights me.
now only the LFTs pose a slight worry, as ALT and AST have nearly doubled since last july and both are elevated above the norm.
in the light of this i intend to take another test in mid july to see how the two are going to behave; especially that last thursday i got the date of my visit to st james' clinic in dublin for 04.08.

for comparison, i have created a separate stand-alone page with the detailed data on my previous and current blood test results, which can be found as a tab called "blood results" at the top of blog page.

maybe after all, Dear Heppy, you are only young and just beginning to do the damage?
me

Friday, March 25, 2011

Bloody Wish List

Dear Heppy
today i went to my GP to have blood taken.
it's been six months since i had any blood-work done, and it was about time to have next check-up to see what's going on.
i brought my scribbled-down bloody wish list with me and whipped it out at the nurse.
the following were on the menu:
FBC - full blood count
ALT - alanine aminotransferase (liver)
AST - aspartate aminotransferase (liver)
AFP - alpha feto protein (liver tumor marker)
ALP - alkaline phosphatase (liver)
GGTP - gamma-glutamyl transpeptidase (liver & bile ducts)
bilirubin (liver)
albumin (liver)
TSH - thyroid stimulating hormone (thyroid)
T3 - triiodothyronine (thyroid)
T4 - thyroxine (thyroid)
fasting full lipid panel - cholesterol, HDL, LDL & triglycerides
and finally fasting glucose.
it beats me why they don't do fasting insulin, which means without it i won't be able to calculate HOMA to check against IR, oh well...
also, i didn't know, that to test for ferritin and vit D level, i should have called in on any other day but friday, because the blood samples won't be sent off to the lab before the weekend, and those two tests need to be lab-processed within 24 hrs. lesson learnt, and i will do those some other time.
i am very excited about getting full lipid panel done, because before, i've had only cholesterol checked a couple years ago and it was bordering high.
the results should be back in about 10 days, and it will be interesting to find out how things are going.
also, i am thinking of compiling a stand alone page with all my previous and upcoming lab results to have it in one place, with easy way to compare and keep an eye on them.
i have not received my medical file from kilkenny hospital yet, and if i still don't have it in a couple of weeks i'll be writing to them again.
and still waiting for appointment letter from dublin, for second opinion with a specialist.
but i'm not in any rush.
me

Thursday, March 24, 2011

Trip-To-Fun

Dear Heppy
for a while now i've been looking into natural, and over the counter means of battling HCV related depression and mood swings, without having to join an ever-growing number of antidepressant users.
my problem with ADs is, they suck all the available serotonin from within the body and pump it into the brain. in the long term it's like running a battery completely flat, without providing any refill on the way, and after it's sucked dry - then what?
nope - i don't like that, it doesn't appeal to me, there has to be another way.
so i ventured forth on a quest and here's the result.
i found that serotonin is metabolised from 5-HTP (L-5-Hydroxytryptophan) - i got excited, it seemed like i had found the solution fairly quickly, but with more in depth reading, obstacles have started to mount.
in itself 5-HTP crosses the blood-brain barrier very easily, but when administered orally as a supplement, it is readily converted into serotonin while still in the blood stream, and serotonin molecule is too big to get to the brain where it's required. especially, if someone like me, infected with you, Dear Heppy, is taking vit B6, which facilitates that conversion.
dang! so now what?
well there is a way of stopping 5-HTP from converting into serotonin, before it reaches the brain, with a drug called carbidopa - awesome? erhm not as much as it seems again, for carbidopa carries its own set of possible side effects, and in overall there is no consensus, whether it's better to take 5-HTP with or without it.
uuugh i'm getting confused and frustrated!
this neat fact sheet could ease my mind, but it's based on research and studies dating back from '90s and its authors seem too eager with promoting 5-HTP without single mention of any drawbacks - hmmm.
still, i wasn't giving up that easily.
i took another step back in the chemical process and dug fiercely into L-tryptophan, immediate precursor to 5-HTP.
future looked bright again, as i read more about benefits of this fantastic essential amino acid. not only it is good for depression, but also for insomnia, food cravings and aging - yes, tryptophan stimulates production of HGH (human growth hormone) - too good to be true?
indeed...
tryptophan requires vit B3 to metabolise into 5-HTP, it has to compete with other amino acids for a lift to the brain (that's why it should be taken away from food and with quick releasing carbohydrates ie fruit juice), plus a significant amount is catabolised into other various by-products including kynurenine and quinolinic acid which are neurotoxic, so it's not exclusively converted into 5-HTP only - whatta bummer.
nevertheless research supports that either, L-tryptophan or 5-HTP, are better solution to depression, rather than conventional ADs.
even more so, in case of HCV infection and especially tx, it's been proven that plasma level of tryptophan drops dramatically in presence of INF-α during the treatment resulting in irritability, mood swings and depression.
this small study presents that supplementing with tryptophan during tx for HCV can alleviate severity of depression. and it has been later followed up by discussion in favour of 5-HTP.
despite certain drawbacks to use of either L-tryptophan or 5-HTP, there is no question, as to how hugely beneficial they can be, for anyone who suffers from HCV related depression or even more so, when undergoing grueling tx for hepC.
in the end, my dilemma only boils down to the choice - which one should i pick to treat myself with?
i think, i shall experiment with tryptophan first, and if it doesn't take me on a trip-to-fun, then i would switch to 5-HTP.
it's just ironic, that in ireland, being a country with high prevalence of depression and suicide rate, both are forbidden and unavailable.
thank god for the internet and online shopping!
but please Dear Heppy shhhh! don't tell anyone ok?
me

Thursday, March 3, 2011

Future

Dear Heppy
possibly you'd like to know where things are gonna go from here,
well i'll be waiting for the second opinion appointment to come, whenever that's gonna happen,
every few months i'll have a battery of blood tests to keep an eye on liver function, cholesterol, thyroid, glucose, AFP and standard FBCs,
i'll continue being plugged in to pipeline news about developments in upcoming tx drugs and looking out if any clinical trials are available in ireland with possibility of signing up as a laboratory mouse,
so as you can see it's not a total 'game over',
no, absolutely not, i'm not that kind of person,
i'm a dragon remember?
of course i'll stay in touch with you whenever i have any news,
how could i possibly forget about you and abandon my own bloody companion?
no way!
so don't worry but in the mean time my main focus and energy will be channeled into my other experimental writing project at Shaperate which you are more than welcome to visit and take part in if you like,
talk to you again Dear Heppy,
me

Wednesday, March 2, 2011

Putting Feet Up

Dear Heppy
for the past few weeks possibility of tx was still viable and i'd been siting on the fence unable to make my own decision if to purse treatment or leave it,
weight of responsibility had been too great to turn away from tx by my own doing, i wouldn't have been able not to think 'what if' but finally passage of time had mercy on me and made only one path to follow available,
with all the best intentions ladies from dublin based 'community response' kept me hanging for quite a while because they told me it was in their power to squeeze me in for a visit in less than 6 weeks, despite their efforts there was nothing they could do for me but at least i know now that general policy of tx teams in ireland is to keep those who can, waiting for new drugs to come out,
so that's it,
tx won't be happening any time soon,
nevertheless yesterday i went to my GP for a referral because i want to be seen by a specialist who has no hidden agendas and document myself with them as a hepC patient case that will be in need of follow up and attention in the future, i believe this is the best way to go about it, in case anything should start deteriorating or required and kind of intervention for whatever related reason, it will be better to already figure in the system with documented history, rather than suddenly pop out of nowhere should you wish to make things worse for me,
as my GP referred my case with label 'for a second opinion' this time i expect waiting will exceed 4 months but i don't mind that because this time i won't be waiting nervously for it to come, i have already made peace and began joining fast lane of main stream of life, refocusing on more important and immediate things to enjoy my life as it is,
i'm putting my feet up Dear Heppy ready to enjoy what happens tomorrow and it will have nothing to do with you,
me

Monday, February 14, 2011

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

Saturday, February 12, 2011

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

Monday, February 7, 2011

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

Thursday, February 3, 2011

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

Monday, January 31, 2011

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

Tuesday, January 25, 2011

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

Sunday, January 9, 2011

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

Saturday, January 8, 2011

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

Friday, January 7, 2011

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

Sunday, December 26, 2010

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