Welcome, Guest. Please login or register.
April 08, 2020, 02:12:18 pm

Login with username, password and session length


Members
  • Total Members: 6204
  • Latest: Dadou
Stats
  • Total Posts: 54824
  • Total Topics: 4729
  • Online Today: 87
  • Online Ever: 1314
  • (June 22, 2016, 05:23:42 am)
Users Online
Users: 0
Guests: 64
Total: 64

Welcome

Welcome to the Hep Forums, a round-the-clock discussion area for people who have Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.
  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.
  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.
  • Product advertisement (including links); banners; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from the Hep Forum Moderators.
Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: being stonewalled  (Read 5576 times)

0 Members and 1 Guest are viewing this topic.

Offline mikeo52

  • Member
  • Posts: 19
being stonewalled
« on: May 09, 2017, 06:19:06 pm »
 >:(my level of frustration is very high.my doctor wants an MRI but insurance has denied it 2 times already. this is based on a previous ct scan w/contrast and many other previous tests that confirms my condition. I am hcv positive and have been for many years, and now have cirrhosis because of it.i am not an alcoholic and I have never had a drinking problem. when a ct scan back in October 2016 for a kidney stone problem revealed the cirrhosis I stopped drinking alcohol altogether. I have to agree with evicore at this point. there is no need to test any further, but for some unknown reason my doctor is not moving forward! he has already told me that a 12 week treatment of harvoni would more than likely cure my hep c and by evicore's own admission previous testing that they approved for Etna confirms my condition! HELP, I DO NOT KNOW WHAT TO DO! :'(

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,461
  • Get tested, get treated, get cured, fight Hep c!
Re: being stonewalled
« Reply #1 on: May 10, 2017, 12:33:48 am »
Your insurance likely needs no more testing which is why they likely won't approve additional testing is my best guess about that.

So basically since you have cirrhosis already documented it should be an easy approval. So my question is why doesn't your doctor just prescribe the Harvoni or one of the other new meds like Epclusa?

I guess just ask him flat out to prescribe you a treatment. If your doctor won't write you a prescription find one who will.
« Last Edit: May 10, 2017, 12:36:24 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline lporterrn

  • Member
  • Posts: 1,984
  • LucindaPorterRN
    • LucindaPorterRN
Re: being stonewalled
« Reply #2 on: May 10, 2017, 10:11:53 am »
In addition to Lynn's suggestion, you can call Help4Hep and ask them for assistance: 877 Help 4 Hep (877 435 7443).
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline mikeo52

  • Member
  • Posts: 19
Re: being stonewalled
« Reply #3 on: May 10, 2017, 08:38:14 pm »
 :-*THANKS FOR THE ENCOURAGING REPLIES. MY DOCTORS OFFICE CALLED ME TODAY AND IAM SET- UP WITH AN APPT. TO SEE THE DOCTOR ON 5/30. DON'T KNOW WHY APPT. IS SO FAR OFF BUT I'LL TAKE WHAT I CAN GET. HOPEFULLY THE DOCTOR WILL REVIEW EVERYTHING IN THAT TIME AND START THE TREATMENT. I JUST WONDER WHY THINGS TAKE SO LONG WITH THIS OFFICE. THEY SEEM A LITTLE INCOMPETENT TO ME, BUT WHAT DO I KNOW! IPORTERRN, I WILL BE USING THAT # IF THINGS DO NOT GO MY WAY, THANKS. AND LYNN, THANKS TO YOU ALSO. I WILL KEEP YOU POSTED.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,461
  • Get tested, get treated, get cured, fight Hep c!
Re: being stonewalled
« Reply #4 on: May 10, 2017, 10:10:25 pm »
I think this is why we are called patients

Because we need to be very patient waiting for things to happen :)
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline mikeo52

  • Member
  • Posts: 19
Re: being stonewalled
« Reply #5 on: May 11, 2017, 06:45:54 am »
HA, FUNNY. NEVER THOUGHT OF IT THAT WAY ;D

Offline dragonslayer

  • Member
  • Posts: 873
Re: being stonewalled
« Reply #6 on: May 11, 2017, 09:33:50 am »
:-*THANKS FOR THE ENCOURAGING REPLIES. MY DOCTORS OFFICE CALLED ME TODAY AND IAM SET- UP WITH AN APPT. TO SEE THE DOCTOR ON 5/30. DON'T KNOW WHY APPT. IS SO FAR OFF BUT I'LL TAKE WHAT I CAN GET. HOPEFULLY THE DOCTOR WILL REVIEW EVERYTHING IN THAT TIME AND START THE TREATMENT. I JUST WONDER WHY THINGS TAKE SO LONG WITH THIS OFFICE. THEY SEEM A LITTLE INCOMPETENT TO ME, BUT WHAT DO I KNOW! IPORTERRN, I WILL BE USING THAT # IF THINGS DO NOT GO MY WAY, THANKS. AND LYNN, THANKS TO YOU ALSO. I WILL KEEP YOU POSTED.

Wait.. What?    You got an appt the same month that you called?    I waited 5 months for a followup appointment!   Initial appointments are even longer..  Hepatologists are more than busy these days.. Consider yourself lucky!
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline mikeo52

  • Member
  • Posts: 19
Re: being stonewalled
« Reply #7 on: May 11, 2017, 06:28:41 pm »
BY MY STANDARDS IT DOES NOT HURT JUST TO MAKE A PHONE CALL OR RETURN A CALL. I BELIEVE IT IS CALLED COURTESY. READ THE POST'S AGAIN, ALL THE TEST RESULTS ARE IN. ALL I WANT IS A SCRIPT OR A GOOD REASON WHY I CANNOT HAVE ONE. IF THIS IS THE NORM THEN YES, I GUESS I AM LUCKY. HERE IN NJ WE ARE NOT USE TO THIS TYPE OF TREATMENT FROM THE MEDICAL PROFESSION. THANKS FOR YOUR REPLY

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,461
  • Get tested, get treated, get cured, fight Hep c!
Re: being stonewalled
« Reply #8 on: May 11, 2017, 06:52:26 pm »
Hey Mike

None of us were used to waiting weeks to months to see a doctor but none of us previously needed to see a high level specialist.

It is one thing to get in to see your GP doctor and a while another situation entirely to see a hepatologist, oncologist, cardiologist or any other type of "ologist"
Hep c is not a medical emergency even if the patient has liver cirrhosis. Which is good that we have time to wait to be seen by a doctor but bad that we have to wait to be able to get an appointment.

Really several months to see any kind of specialist is not uncommon and as far as a hepatologist or gastroenterologist there were many patients waiting in the wings infected with hep c that were not successfully treated in the past that now are flooding specialists offices to get treated and finally cured of hep c.

So really the surprising thing is that you were able to be see so amazingly soon as only one month.

But yes it is nice to get a return call to answer a question. My doctors office uses "MyChart" I can send a message and get an answer back from my doctors nurse in 2 to 3 days.
« Last Edit: May 11, 2017, 06:55:51 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline dragonslayer

  • Member
  • Posts: 873
Re: being stonewalled
« Reply #9 on: May 11, 2017, 08:18:22 pm »
Lynn, my med group uses mychart also.. What a convenience that is!  Im getting bloodtest results as quickly as the doctor now; faster than even on the lab's own web site.

Mike, when trying to talk to my doctor in the past, during treatment and prior to SVR, I found a key is to learn the nurses names assigned to your case.. Often, youll get through to them faster and more frequently than the doctors.. And, theyre way more likely to call you back  and interface between you and the doctor.. Theyre simply more accessible.

Its simply a fact of life  today that doctors dealing with HCV, especially hepatologists and especially now that there are so many effective cures, have their hands full.  I really dont think its got anything to do with courtesy..  They have to allocate their limited resources to those who need it the most..  My doctor, for instance only saw patients one or two days a week.. What was he doing the rest of the time?  Liver biopsies, transplant surgery, fighting with insurance companies, and dealing with the sickest of the sick... While I was very disappointed when I didnt get a quick return phone call from him, I nevertheless tried to understand why and made sure to at least speak to a nurse.  Shed often speak to the doctor on  my behalf and get back to me with his response.. Its not as direct, but its surely better than nothing.
« Last Edit: May 11, 2017, 08:20:24 pm by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Mugwump

  • Member
  • Posts: 775
  • My number of posts means nothing, piscor ergo sum!
Re: being stonewalled
« Reply #10 on: May 12, 2017, 02:57:42 am »
Mike, I am sure that you will receive treatment soon. The bad news is, then the waiting gets much worse. You get on the pills and wait for test results to confirm at 4 weeks that the drug is working. That is the easy part. Then the hardest part by far comes, at end of treatment when you must wait 12 weeks to be absolutely certain that you are now completely free of HCV.

It is absolutely crucial that during the periods of uncertainty and the emotional roller coaster of treatment that you do things to take your mind off the process! It is the only way to remain sane during the process. For me it was doing things like fly fishing, studying challenging music on the classical guitar, but it can be anything. Taking up sword fighting, boxing, cliff diving, parachute jumping, it does not matter. Most of all learn to live again and stop considering yourself to be a patient.

Cheers
Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

 


© 2020 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.