Unbelievable

[Trinity4]

Just got off the phone with my local hepa.  He said in lieu of the information that has recently been discussed at the AASLD Conference he has now reconsidered extending my treatment to 72 wks.  Additionally, he added because I dose reduced the last three weeks (which I did not) he feels that if I'm still willing to go the distance he is in line with treatment extension.  Firstly, nothing new about extending surfaced in San Francisco that hasn't already been published by Berg, Sanchez Tapias or Pearlman.  This is the doctor that became indignant with me when I tried to present him with studies supporting treatment extension.  This is the doctor who would not confer with another specialist and forced me to seek out another hepatologist who does support extension. This is the doctor that pulls the trigger too fast and recommends dose reductions when the whites and platelets start dropping instead of taking a more aggressive approach.  This is the doctor that caused me a tremendous amount of anxiety and consternation.  I knew I was right all the time because I read the studies and was told by this forum not to accept anything else.  I appreciate that fact he has reconsidered treatment duration given he has an ego the size of TX, but I can't in good conscience stay with this doctor after my 48 wks is up.  I would much rather make the trek to Atlanta and treat with a Pearlman who knows what he is doing and always has but it is tempting because no travel time involved if I stay local.  Also, 4 weeks ago he would not order refills on my Neup and I explained to the nurse I only had one shot left and my deductible was met so the meds wouldn't cost me anything as long as it was ordered in 08.  He refused and said he couldn't do that.  Now because my ANC is 800 and I've had a month of Neup shots he realized I'll probably need it for the rest of treatment and will try to order a 90 days supply?  
I don't understand why the change of heart with this doctor?  A doctor can't control what we do with our medications and because I'm so tired and would have to travel so much to Atlanta, I'm wrestling with this now.  It's as if I've woken up from a bad dream and things are the way they were always supposed to be.  I just thought I'd share this with you.
Trin

[portann]

Okay, I'll give you the link, if you'll tell me what to do about my Christmas knitting. :)  

Here's my own confuzzle: I cast on 26 stitches for hubby's Christmas scarf but now, three feet later, I'm at 34 stitches, a half inch wider. Shall I just hope he doesn't notice? I'm truckin' on, trying to reach seven feet by Christmas Day.

http://www.chantelle.com/

Warning: For women only and don't skip the intro.

Best things forward, always.

Love,
Port

P.S. Chanterelles are also yummy, in a different way. I store them in empty paper bags, whereas I store empty paper bags in Chantelles.

[Deb_c430]

ok I googled no mushrooms called chantelle only chantrel!

I did find a bra link called chantells. I dunno know either epi,  Hello  Portann?     we are confuzzled!  

[epiphiny]

Lol!  But I am still confused!

[Deb_c430]

a mushroom!!!!!!!!!!!!!!!! YUMMMMMMMMMMMMMMMMMMMMMM

[epiphiny]

Cultural Handicap Alert!!  What's a Chantelle?

[portann]

The secret is in a Chantelle, believe me.

Happy holidays.

[jt57]

t*ts out?  Gosh, mine are gone now!  After 21 weeks of this tx, they seem to have disappeared!!!!


Good luck to you.  Keep your life simple.  Stay with this doc, but confer with others.  You can always change if things get worse..
Jean

[merryBe]

and ditto to what co-writer said....sometimes I think that's the primary reason I ended up with whom I ended up...because a patient needed to rock the boat. the Lord works in mysterious ways....how many more will get well due to our tenaciousness and His grace?
mb

[merryBe]

all I can tell you is it sounds very similar to what I experienced. First he wanted me to quit, was dismissive and non-plused by my studies....etc etc.  I tried friendly, I tried reasoning, I even tried relaying info via his NP who is a good listener....in the end there was no budging on the Alinia and I was uncertain the ext. tx studies were being read either...
so in the end, I tried the thing I should have tried in the first place.
Prayer.
I put myself on our prayer change.....and then reluctantly went back in with my studies in hand for a third go round...(thinking it was useless yet feeling prompted).
I got a totally different reception....a 180% change in attitudes really. It was startling.
Then again, it was the Lord. All my reasoning had fallen short, but Jesus's wisdom never does.
Pray for eyes to remain open. amen.

mb

[CoWriter]

He didn't know and you educated him.  Because of you, patients he sees in the future will be better off.  When they need to extend their treatment, he will know what to do.  What you taught him will impact many lives (so what if he says he learned it at AASLD).

Good job.

Co

[comeagain]

I got to say I couldn´t said it better than jim in plain swedish exactly my thinking.

ca

[apache1]

I agree Jim. your judgment is right on, as always... except for IR , lol

Trin, imo as your tx progresses towards eot, its  possible problems could arise that need an aggressive approach...will he be like before, refusing to be aggressive?

No law against keeping keeping both dr on your case? I have a few.

apache  

[jmjm530]

Get screwed once, shame on him. Get screwed twice, shame on you.

You're probably OK at this late point, but I emphasize "probably". If you can accept the possibility of things being screwed up again (and maybe even again) in ways you may not now expect -- and then having to deal with the consequences -- then go with logistics and stay put. If you can't, make it Sayonora and go with a pro like Pearlman.

-- Jim

[nygirl7]

How freaking aggravating!

Hang in there - at least you have one battle WON! Keep on going, at this point he has to realize that you DO know more than he does (even if he won't admit it, which I was lucky my doc finally did which made things SO much easier) maybe now he will deal with you in a different manner?

At least you are going to get to extend my friend.  That in the long run is the most important thing. I don't know about Neups though my prob was my reds....so I wont even go there but I'm glad finally you got this guy to go along - will he check for you if the insurance will pay the extra meds? now that your regular GI is prescribing it might make it a bit easier?

[sunqueen]

Just so that it is said, you were one of the people who inspired me to fight to extend. I remember reading about your ordeal with tx doc and trip to Atlanta to get extension. Maybe others here showed you by example long before I got here, but you were certainly one of 'em who set the bar for me. I got my extension from my GI, and I did hear from the hepa I consulted with a day or two later. They both said add 12 weeks and I know they have spoken since I was in the office (the hepa emailed me).

I'm glad your tx doc is on your side now. I know that it can be a little weird when some things just rub your fur the wrong way. I felt that way right after I got here and learned weight was a negative predictor of SVR, was on wk 2 and no one had shared that with me *before* I started tx. It turns out that I was on weight-based but it would have been nice if we discussed it a little maybe before I decided to tx then.  I can't say what you should do. I know that tx and work are hard enough, and that taking time to go see docs/labs is one more energy-draining (life-sucking) component we have to toss in the mix. Good luck with whatever you decide!

[kickboxingmom]

I hope you make all the right decisions.You are doing something right.You have made a difference.Hang in there.You CAN DO IT !
Tammy

[Kristina538]

mmmm... I've been to 3 docs.  The first was a across the city and I transferred to closer.  The second wouldn't give me a 4 week (G3) PCR;  the third gave me the PCR and the second said he would have (after the fact).  The first would've put me on 800mg riba, the second 1000 riba.  None would look at extension for 'early cirrhosis' alone with RVR....

Juggling between the private and public sector helped, and some days I was very grateful for not having to drive the extra miles.  But THANK GOD for this site because at least I am taken more seriously, as it appears you now are as well.

Unfortunately, while you would like to be closer, I'm sure you've got the stress of having to 'manage' your doctor 'manage' you, which is extra anxiety on top of having to deal with the sx's as well.    I hope he's learnt from you;  congrats on setting it up the way you have thus far and keeping the site informed :-)..   Much love towards the choice you make....

[CMcH]

I am so sorry you have had to go through this.
I thank you for fighting the fight for all of us.
I feel like lab rat, poisoning my body.
I am so tired of going to docs.
It is hard to stand up for yourself when you just want to lie down.
Hang in there girl and keep the faith.
Wishing you lots of love & strength and a healthy New Year!
Connie

[comeagain]

on card means dont play strip poker with him be on "guard instead"

[comeagain]

Yes if you had one of those bras they had in the 50s the doc would probably have played along with you right from the start.

Seriously if you decide to keep your doc be on card but as long as he writes out the meds you need what more do you need him for.

You know I didn´t like you to drive that far on the meds so I´m pleased if you don´t.

ca

[Deb_c430]

Lol your such a dude RG!

[R Glass]

It's a damned shame, I read everything but when it got to the T*ts out, I forgot everything else.

[Deb_c430]

Hey  hey!   Exacto!  Me to trin, i stay because there people I love on this forum,  when I freak  and I do, who do I call? not ghost busters, I call you all. that is what friends are for!

so stick out  those bits, forward!   I wish I had some left to stick out lol!  

[epiphiny]

Hehe, I love the t*ts out plan, that's the way forward!