Hepatitis C Support Group

Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.

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vabuttafly 03/18/2014

I posted last night about my dr appt today. Im trying to organize my thoughts to be clear and short as possible. ha! My last appt with him was disappointing because I thought Id be prescribed treatment. I am genotype 2b. As far as stages I have no idea. I never received any other scans or biopsies. My last visit with him he said I will be doing the ribavirin/sovaldi treatment. His office was not yet ready for the protocols associated with sovaldi so hopefully in two months they would be. He also said in the meantime, they would contact my insurance for approval. Fast forward to today- I waited 1.5 hours with a two year old before I was seen. My appt lasted less than 5 minutes. He didn't even open my file on the computer. I was heated!!!! He started talking about possible Interferon,Riba, sovaldi treatment. What the hell?!! Im genotype 2b. I felt like he was completely out of the loop. Then he proceeded to say there is new treatment that is all oral. Sovaldi and another? Well, what's the other? He never said. I said did they call insurance? Nope! He said they would have to know what treatment i would be on before they contacted them. Hello? That's what the last appt was! He said he wanted to set me up with the nurse practioner who deals with the treatments. i am so upset. I will not be going back. This appt confirmed that this is not the dr for me. I seriously thought I was on candid camera? I just kept my mouth shut because if I said anything I would burst out in tears. I am sorry for this rant, but I am so disappointed and I don't want this dr to be paid for this appt. I want my co pay back and I feel the insurance should not have to pay. He did not provide a level of care and wasted my time. Any advice?

beachymom 03/18/2014

I'm so sorry. That is incredibly frustrating and infuriating! I would definitely change doctors. If he had done his research on your behalf, even if not in the loop on new treatments, he would have known what treatment you should get based on your genotype. It sounds to me like his office not being "ready for protocols" is doc speak for "I have no idea what these new treatments are, nor am I in any hurry to begin learning about them or prescribing them, but I'll make my nurse practitioner do the work". Be glad you found out he's a chump prior to TX, and cut your losses, and find a new doctor you can trust. TX is serious business and you need your doc to be on board with you giving you the best care possible. BTW, the treatment for 2b IS indeed Sovaldi and Ribavirin, 12 weeks. I am 2b and on day 5.

So, so sorry you are dealing with this.

vabuttafly 03/18/2014

Thanks for your reply beachy. I think you are exactly right! I literally cried on the phone with my husband when I left the drs office today. I am grateful that I have done and continue to do my research on this disease. If I haven't been on top of it he would be jerking me around and giving me sub par treatment. Do you think I can call my insurance and complain? I have complained about wait times and that kind of stuff when it comes to drs, but i feel this needs to be addressed. So exciting that you are on day five! Im praying for you! Keep us posted on your progress!

allaboutliving 03/18/2014

So sorry for a very frustrating day. Yes, your doc was ill-prepared & a little cavalier in his attitude. I don't blame you for being upset & looking for another doc. Maybe an infectious disease specialist who is currently treating HCV patients would be the way to go. Geno 2s are not doing IFN so not sure whyhis recommendation for you included that. The new combo he mentioned is the one I'm waiting for as a geno 1a & that should be out by Aug...it is Sovaldi/Ledispavir by Gilead. I would definitely let your ins. rep. know about your dissatisfaction & that you don't feel they should pay for this office visit. I'm not sure our complaints mean much; however, I would also do a google search of this doc & then post my feelings about him on the www so others might avoid facing the same issues as you. In fairness, these drugs are extremely new. Our docs have a lot to learn & keep up with in the world of HCV. It isn't fair that we have to educate our docs on occasion but I actually get it. My GI txs patients with all manner of gastro problems as well as surgical procedures, colonoscopies, endoscopes, cancers, diverticulitis, colitis etc. The rapid changes in HCV tx has to be somewhat challenging for them as our docs since it is remarkably overwhelming to us who suffer with the virus & are obsessed with all things related to our tx. Wishing you great success with a new doc & getting the tx that you should have & that you need!

deleted_user 03/18/2014

Sorry you are having such a bad experience. Prayers for you. I'm seeing a Dr. at Mizzou University Hospital and feel that I have had personal care. Maybe if you have a university hospital in your area they could help or give you information. Keep us informed.

WarriorGal 03/18/2014

Beachy really got this dude's number! I wondered what he meant about "not being ready for protocols" last time you saw him and posted that.

And I like AllAbout's suggestion to fin done of those "rate your doctor" websites and rate him!!

Lose this looser!! He has no clue. I hope you live in an area with options. Google liver specialists in your state. i see an infectious disease specialist who specializes in HBC, HCV and HIV.

What a waste of your time!

Buttafly - nolite bastardes carbarundum! It's a bump in the road.

Trissa01 03/19/2014

I'm sorry. We look forward to seeing our drs, getting new information & hope. Doesn't sound as if you got much of either.
I agree, make an appointment with someone else, nothing to lose.
We are all expecting to be treated this year, but realistically thats not going to happen for all of us because the treatments offered or what we are approved to take may not be the best choices for our medical history.
Lets remain positive that treatment is coming.Most of us have had the virus for decades. A few more months won't matter - for most of us.

SandyDo 03/19/2014

Sorry...what a disappointment that must have been!

dillytime 03/19/2014

all i can say is patients...itll come...svr.

deleted_user 03/19/2014

I was just thinking while reading, the same thing that kahooch5 posted. If there is a university hospital you can get to, there are some advantages. There would be a whole team of doctors and students who would get familiar with your case and be able to offer the care you need. A downside to that is sometimes you might see different doctors. Another advantage is university hospitals will usually see patients regardless of their ability to pay. I've been getting my care for 5+ years from UW Medicine after I wasn't happy with the doctor I was seeing. Maybe time to look around!!

DRTJC 03/19/2014

vabuttafly I went to Mayo clinic in Florida .I got my approval in less than a week .I'm 1A &on Savoldi & Olysio Combo& also used the manufactures co-pay card & I only pay $30 a month for both meds .there is hope just don't give up .I think when I'm having a bad day like today I just need to man up & be glad that there maybe a light at the end of the tunnel Let me know if there is anything I can do to help& I'm on day 5 of treatment .& thanks to everybody here for your kind words & support

deleted_user 03/20/2014

So sorry for your negative experience though not uncommon in the world of HCV. I have been dealing with this since 1992. Have been through five different medical groups with the best care from UW Medical Center in Seattle. Until the UWMC and one other Excellent Nurse Practitioner, I have had to educate myself and the MDs. You have to find a group/MD who treats HCV ALOT and is up to date with the latest info. I am 1a and just finished a year of Triple treatment with Victrelis and am now SVR at six months. So hang in there and get the care you desire from competent medical professionals. There is a lot of hope for new and less complicated treatment. When that happens more doctors will be doing the treatment but NOW you need a specialist in HCV (Hepatologist, Infectious Disease or Gastrologists)

Type0 03/22/2014

Was it a primary care physician? I do not expect my PCP to know about liver disease. You need to see a specialist. Also there is a difference: there are gastroenterologists and there are hepatologists. Find gastroenterology group, go to the doctors profiles. You can usually see a doctor's picture and read his biography. It will state if he is specializing in the liver disease. What you could of do with your PCP to make your money worth is to ask for the referral to the specialist. Doctors in general know each other and have idea of who would be better to see. In fact- it was his direct responsibility to refer you to the specialist for the consultation. If your insurance requires referral to see a specialist, you can call your Dr's clinic and explain that your doctor needs to give you referral and you just forgot to get it last time he saw you.

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