My 11th week appt with Dr.Jeffers

[charm27]

Well 30 miles to get there and he spent 60 seconds with me. He examined my stomach and liver and left. Said nothing about anything and before I could say anything he was gone. So...I spoke to the PA who is very nice. She said I started out with a HGB of 14.7 11/23. Now its 12.1. All liver enzymes normal. Platelets dropped from 250 to 162. WBC is 3.0. Neutrophils is 1.6.
She said all is fine now, and I will contine these CBC's every two weeks. I asked how many weeks I would be doing she said to do 52 so thats what I will do. I had the Quantasure Plus done at Labcorp.
which determined UND . Its says <10 on the Labcorp paper.

Thinking of going back to my ocal hepatologist across the street from where I live he is the one that referred me to LJ in the first place with regards to originally possibly joining a trial but since that never happened I dont see much of a point continuing with LJ-he's so busy, understanably so, like he said at my previous appointment he is a consultant and I think he would like me to return to my original hepatologist whois excellent by the way. To drive 30 miles to spend 30 seconds with him I dont think its necessary at this point.

I also gained almost 8 pounds?? To much fat with that Riba!!
Xenigma- Would love to have lunch with you-but not now-Im totally burnt out right now and in a few weeks will be looking for a new job and my life is as upside as could be. Maybe next month ok??
Im in a zillion pieces right now. Your in Cooper city not to far from Weston-we'll do it not just now.
Send me an e-mail when you can!

Charm

[charm27]

My local hep doc is in Pembroke Pines which is a few miles from Weston where I live.

Thanks Susan for your input.

Charm

[sldb]

I have been going into my heps office for 3 yrs.  with a list, this gets his attention.  If i dont bring a list he now ask " where's the list".

[susan400]

Where do you go for your regular doctor, what city I mean?  This is why I don't make more of an attempt to drive 5 hrs down to Miami.  Like I really want to spend a whole day going down there and back and all that gas, just to have a 10 min session??  Not!!  It's just so not convenient for me, even if they are supposed to be world class docs.  For me, it's way easier to go up to North FL because my parents are up here and I can stay with them overnight.  So, my place for my hepatologist is at Mayo.  I've tried several times at Shands, but it's just been ridiculous trying to get into there for me.  I finally was able to get a return email from the one nurse there who was in charge of the study from last spring that I had tried to get into...I'd sent my records to them by Fed-Exp. or UPS, they received them-I know for a fact because I got a signed receipt back from them.  Anyway, I never heard one word back from them.  This was from last April.  After that attempt with Shands, - which didn't pan out,  I was contacted by Mayo and went into the VX trial.  Anyhow, on Thurs., I had sent an email out to this nurse, at Shands, on follow-up to see what was going on with it and I was told that there's no studies that I qualify for and that I'm in a long list of people waiting.  So, I'm like, okay.....so why should I even keep trying with them?  I think I'll just stick w/Mayo.  At least I have a good repore with them, they did get me into the study there last spring and the staff there are extremely nice to me.  I'm just too tired of dealing with it all and just want to stay put w/the known, you know?  My regular Gastro. is in Lakeland and he's a real sweet doc.

Susan

[lindavalu]

Wow you poor thing a 30 sec fly by visit.
I was lucky to have a hepc dept in my local hospital 20 mins drive away
some people had to drive a bit further.
In OZ you keep the same hep doctor from start to finish and each visit is booked for 20 mins if you want it.
I know brain fog can some times slow down your ability to think on your feet so
writing some questions down b4 hand could be a good idea can you could nail his foot to the floor in your one second or ask for a better doc- or do you just have to be prepared for who ever you get?
"Welcome to the machine" eh.Good luck
Aroha linda

[charm27]

Yep very disappointed. The 1st consultation was good. The second visit was the same as today. (30 seconds)

I need to think about this.He did advise me about only being a consultant however this was the first time in 11 weeks since tx Ive seen him. Had questions obviously.

I just dont feel like getting aggravated He did mention today me going back to my original heptatologist- he was honest? Doesnt have the time. He doesnt want to tx me obviously. I understand to a point I do.
I just cannot have anymore aggravation in my life at this time to much is going on and its ng for me.

I might leave it alone for awhile my next appt with  him is 4-1. I will make my decision after I see him and thats that.

Thanks Jim
Charm

Doctors cant be with them or without.

[jmjm530]

charm: What can you do? LJ is just to busy . He spend 30 seconds with me.
-----------------------------------
Based on what you said, this guy is a jerk doctor. Even my worst consultation -- a certain big-name a*sshole dermatologist -- spent five minutes answering my questions before he backed out of the room. Probably not worth the phone call, but what they "hey" -- you might pick up the phone and ask to speak to the office manager. Tell them exactly what happened -- how you travelled all the way, etc -- and that you want five minutes of the doctor's time to answer your questions, or if not, the bill is going in the trash :)

-- Jim

[charm27]

It did suck since its the first time I got to see him since tx. I did have questions that would have took 5 minutes but things didnt work out.

So the PA answered my questions. I will probably go back to my hepatollogist who is nearby and he's the guy that refereed me to LJ. My hepatologist is VERY good.

What can you do? LJ is just to busy . He spend 30 seconds with me.
Just as well I guess he's just a consultant as he explainedas per  my last visit with him.
I understand to a point.

[jmjm530]

Frankly, that sucks, and while others have reported good results with this doctor, some have mentioned similar.

My hepatologist is a very busy fellow with five star credentials and even when hurried never spent less than 10 minutes with me and longer if I had questions. Also had three other consults with hepatologist during treatment. The first spent around 40 minutes with me. And the second and third somewhere between 15-20 minutes, maybe longer. This does not include the time I spent with the NP's or in one case another doctor in the office.

I believe Schiff is in that office and haven't heard any negative feedback on him, so if you do venture down again, maybe try another doctor.

-- Jim

[Xenigma]

Would love to have lunch with you-Maybe next month ok??
Im in a zillion pieces right now. Your in Cooper city not to far from Weston-we'll do it not just now.  Send me an e-mail when you can! ...
---------------------------------------------
Glad all went well today and I agree you could be followed now closer to home.  When things settle down with you (maybe after you find a job and settle in a bit-there's no rush) we will do lunch or brunch. No rush, I'll be here - you just feel better...
enigma

[charm27]

I had to beg for a 8 week PCR> they only do 4 , 12, & 24. I sent 1/2 dozen e-mails made 2 phone calls and was persistent after all I am  am paying out of my pocket 300.00 a month for medical insurance. I am entitled to have had a 8 week PCR right! So luckily I was able. I guess I would say being I had low VL at 4 weeks that I probably cleared by 5 or 6.

THANKS FOR YOUR INPUT & HOPE LIFE IS TREATING YOU BETTER!!
Charm

[alagirl]

its difficult to imagine (for me) that you weren't UND by week 5 having been so low at week 4.  I'm willing to bet you were.  To me, that's for all practical purposes an RVR. I would have made them check.  Again.  At five weeks I mean.  As much as my doc admits that he doesn't have all the answers and needs a consult due to my hemolysis and acute status (which is smart in and of itself and one of the reasons I like the guy), I swear to God that man would test me for anything and everything under the sun at a moment's notice if I asked.  

He's also on board for different treatment protocols IF I can find studies, more on board than I am actually, I'll bring him things and I'll be like, WAIT, no, I don't want to DO this YET, I just want you to SEE the article so we'll have it to go back to if we need to change protocols, geez...

I just know that if I walked in there tomorrow and said Doctor, I found a recent article from Johns Hopkins that said if we sacrifice five rabbits over two naked virgins at midnight tomorrow I'll be cured of HCV, he would say, "Johns Hopkins, really?"  and then the very next thing out of his mouth would be, "Where do you think we could find the virgins?"

(no actual rabbits, nor virgins for that matter, were harmed during the writing of this post)

[charm27]

I was UND on my 8 week PCR. So I assume obviously I was UND between week 5 & 7.
My 4 week PCR was 330iu.

Im getting the meds thru Pegassist and they give me 1 years worth. I assume thats why I was told to to the 52 if thats what Im getting. So I probably will.

FlGuy: Yep the trudge to Miami is crappy and I dont think there is a need to be there at this point. He is a consultant very busy and I understand.

[alagirl]

I'm sure I'm considered to be a "bad" patient, but I a) always bring someone with me (you know, as a witness to whatever stupidity might occur if I was alone - I'm only kind of kidding.  I've found that doctors are MUCH more respectful if patients have someone with them so I DO bring someone into the room with me for every exam) and b) I make the doc, answer each and every question I have on this list I draw up well before I get to their office.  c) THEN, my witness asks all the questions they think I may have forgotten, and God help the poor doctor if my son's the one who's with me (usually the case of late) - because he has a MUCH better memory than I do and he can remember tons more questions.

And for some reason, my individual different docs seem to mostly communicate through me.  Which is helpful at times.... And a pain at other times.

[nygirl7]

PS IF you are UND at week 11 why are you even considering extending?  Just curious cause I"ve either forgotten or missed it.

[FlGuy]

I may have mentioned in the past that my encounter with LJ was arriving at tx plan, executed with my local GI, directed by LJ.  That concept worked for all of us.  It was up to my tx doc to interract with hematologist with goals established for hgb, anc's and platelets.  Trudging down to UM on a frequent basis was an unreasonable plan for me.  It's sort of a pain to get there, traffic and parking you know.

[nygirl7]

My doc never spent more time than that with me either. Poke poke in the gut and adios. But, I really didn't need him at all anyway.

Your numbers are great and you don't seem to have any problems.  I've never heard of one study to support doing 52 weeks though - that doens't make any sense it's 48 or 72 and really that's it. I wanted only 60 weeks but couldn't talk them into it since there was no study data to support that that would do anything except keep me on treatment longer.

Still - my doc was only ten minutes away. I doubt if I was you I'd continue to go through all of that just for a quick poke (that sounds horrible but you know what I mean hahahaha).  Come to think of it - maybe I WOULD drive that far for one ;)