PCR's at 4 & 9 weeks??

My hubby began his Interferon tx on July 13th (yep, a FRIDAY)--4 week PCR showed a drop from 1 Million+ to about 60,000. Now doc wants him to test again next week (week 9!) and says if the he's not UND he's pulling him from the tx. So, a couple of questions---why the HECK am I sitting here with a brand new box of Interferon which will probably have 3 doses left (ok, yeah the cost is an issue!!!) and WHY isn't this doc waiting until 12 weeks?? All our information comes to us through the nurse/coordinater and NOT from the doc, not once, not ever. Incredibly frustrating, as you can imagine. My hubby asked the nurse a lot of questions and she was clearly in over her head and kept saying, "Just come in for the PCR on Monday. I'll call you next week and tell you what doctor wants". My hubby asked me if I had told her he was depressed and I said "all I did was ask them to change the standing order for AD to one that didn't have the s/a of migraines. I think it's a GIVEN that you're depressed!"  Nurse will not give him the results of his blood work so he doesn't know if this is because of low WBC or what....also, Dr. is impossible and I mean that sincerely, impossible to reach by phone--everything goes thru this nurse person. She seems to hate everyone.  
Has anyone had this kind of treatment from your drs? The guy is nice, I suppose, but he hasn't spent a total of 2 hours with my hubby--- including transplant pre-op. post op, etc. We have one possible option to jump ship, as it were to a different doc, in a different clinic, but being a post transplant patient kinda messes w/everything!! Hubby WILL talk to this doc today if he has to go to his office or wherever he is and sit there all day--he is going to demand some face time.
So, anyway, maybe I can sell the unused INterferon to somebody else--costs us $170 a dose.  

[goldenrule]

get a second opinion

[jmjm530]

You really have to talk to the doctor to find out his reasoning. You mentioned "transplant" so I'm guessing this is not a garden variety type of treatment scenario. I'm assuming this doctor is either a liver specialist (hepatologist) or a transplant/specialist?
Sometimes you really have to insist to see the doctor to the point where you don't make friends in the office. But if the guy is "nice" as you say, once you break through the line created by his staff, hopefully he'll explain things. If not, you might try and seek out another opinion if that is feasible.

-- Jim

[BThompson4]

I would at least keep taking all the interferon and riba you have until you can get a meeting with your doctor or switch doctors, which I know can take some time.  It would be ridiculous for your husband to be post transplant and stop at week nine just because he is not UND.  If it came back at a few thousand or lower I would definitely try to keep the tx going.  I am post transplant geno 1a and my doctors were very satisfied with my viral load progress, and I still had 561 IU/ml at week 12, then 72 at week 20, and finally UND at week 22.

Whatever you do, don't rely on a verbal communication of the results of the nine week viral load.  You probably are being followed in a large hospital post-transplant setting, so just go to the medical records department in your hospital and get a hard copy of the nine week pcr, which should be available a week to two weeks after you take it.  Keep taking the SOC drugs until then and then see about switching doctors or whatever.  I know that can be intimidating when you are thinking about needing a future transplant and want to be "compliant" with the transplant center, but it would be a shame to lose your investment in SOC over what seems like some arbitrary decision making on the part of your team at the hospital.  My experience has been that transplant centers don't always have their patients' best interest as their main motivation.

[Liz50]

Thanks for the input---Hubby tried all day to get this doc to call him and was unsuccessful. And yes, being a transplant patient does make this different than the "norm" I suppose, but wouldn't you think that they'd feel just a TAD more responsible to keep the "quarter million dollar man" going? This is NOT a huge clinic/hospital. We had one choice in our state and had to take it, since moving was not an option. The transplant was fine--its the post care we're frustrated with!! There is a teaching hospital that has 2 years worth of transplants now and we are contemplating just moving all post-transplant care there, (It would actually be in network!!)  Switching drs is as easy as this: I called, they said "come on up today!". Seriously--and we can't get OUR docs to give us the time of day--just this hag of a nurse who might or might not call in a scrip if she feels like it.
Absolutely a 2nd opinion!!! And he has 4 weeks worth of the stuff so we're ok, actually the inital scrip was for a full 48 weeks worth.
Thanks, esp. BThompson--you are closest to what my hubby is going thru----thanks for your support.
Oh, and when I said the doc was "nice' I was being kinda snarky. He's not nice at all. VERY condescending.

[jmjm530]

I certainly can't concur 100% with the recommendation to continue taking meds when your doctor says stop, at least until you determine why he says stop. A good compromise might be to take the teaching hospital up on its offer and go see a doctor there this week. And make sure you bring copies of all test results with you. I guarantee that their doctor will be able to contact your doctor right away and find out what is going on.

-- Jim

[Liz50]

Thanks--I know our deep frustration was the total lack of education that was (not) given us at the time my hubby began TX. Doc wrote a scrip, gave us this tiny pamphlet and that was about it. Only through a lot of internet searching have we really learned anything. Knowledge is power--not knowing makes you crazy!! For example, we were told this was going to cure him--baloney!! It's a TREATMENT that can lead to a cure and they should have just SAID that. "You might feel a little tired"---there are days hubby cannot get the mattress off his back--and not KNOWING that this was normal made him think he was dying.
Well, he'll follow thru with the 9 week PCR and also make an appt with the other hospital's Hep doc (actually they all used to be one team and 2 surgeons and 2 hep docs broke off & went with the teaching hospital and it's really a hot button issue still---since the "best" left--or so we're told)  I just want what is truly best for my hubby and I want it explained to me in plain english!!!  
Luckily, we realize we "own" hubby's records and the hospital has to release them to us. (All that $$ for law school for our son has paid off, I'm thinking!)
And no, doc never called hubby yesterday, tho he was promised he would. Big surprise. Well, nothing to do now but wait! Hubby did decide to go on an Anti-depressant as he began finding himself crying at the most innoportune times. (I have known this man 32 years and seen him cry maybe twice) I think the fear of breaking into tears a w/o warning was scarier to him that the 'Riba Rage'--which scared the heck out of me.

[goldenrule]

hang in there girl you are so strong. H is really lucky yo have you