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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

3 comments:

Nanakoosa said...

Anna,
Wow I'm sorry you have to deal with such an a-hole. But I must say you handled it well. You will be an inspiration for those who aren't comfortable advocating for themselves, because after all, that's what we have to do. I'm sick of doctors (not all) who think that medical degree gives them ultimate power over our lives. The forget the THEY work for US, not the other way around. I'm sure there is money involved in the study which is his motivating factor. It's just plain unethical for docs to put money before patients needs and desires; and sadly it happens all the time.
I'd like to put a link to this post on my blog if you don't mind, because it speaks so strongly to the need for self advocacy (and sometimes legal advocacy)
Hang in there hon, we all here for you.
xo
Jenny

eva said...

I think I would feel very tempted to write to Dr Gary and summarise your understanding of what transpired during the whole appointed - ie itemise the different points covered - and then ask him to correct any "misunderstandings" then it would be on paper or he would not correct or re-adjust his position. of course one of those points could be - you inofrmed me of the nature of the Hep C circles and that you know each other well: I am unclear as to whether this was intended to reassure or cautioon me? in any case Anna, I am sorry you have to fight like this.... it ain't right Dr Gary. (((((( Eva Day

Patty said...

Wow, Anna, this is awful! I didn't know the details of why your dr recommended against tx. I'm not familiar how the medical system works in Ireland. Can you demand a second opinion? Research and find the top Drs in that field and schedule with one of them? Do you have any choice of Drs at all? I know when I was living in Italy and needed to see a specialist that the American base clinic didn't have (which was most specialties), I had to go where they told me and the care I received was substandard to what I was accustomed to, which is the main reason we chose to return to the US instead of staying in Europe. As much as I LOVED living in Italy, I actually even returned early, ahead of my family, so that I could get better care.

Of course, there are drs who act this way everywhere, and our medical system is FAR from perfect also and often more motivated by money than patient care, but for the most part, we have a choice. There is often red-tape with regards to choice for some people depending on who's paying, but there are different programs for people who can't pay, and sometimes the pharmaceutical companies will provide the medications free of charge for those who are unable. *Crap, I don't know where I'm even going with this anymore. Ugh...f'n brain fog!

I did learn, while working in the medical admin. field when I was in the military how important it is to maintain your own set of records and advocate for yourself as you are doing, especially since I had to fight to get my disability benefits. I do agree with Eva that putting your questions to him in writing and asking for him to reply in writing is a good idea. It's always good to get things in writing and document, document, document! The way you were treated really wasn't right, and I am sorry you've had to fight like this.

~Patty