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 01/09/2014

I met with my gastro today and Im not quite sure how I feel about the whole meeting. It took two months to get in and i was hoping to have at least a start date for treatment. Anyway, I was there 1.5 hours before he even came in. he spoke to me for about 4 minutes total. The good news is he mentioned "new treatments" that just came out in the past month of so. So asked him if he was talking about Sovaldi, and he said yes. He could tell that I did my research. Anyway, He is willing to start me on it, BUT..... since its a new drug their office hasn't developed a protocol for labs to be drawn etc....They are still working on that and he told me there's no rush, that I will come back in two months and they should have a better idea on what to do. I told him that I was in a hurry because I want to have another baby and I know that I have to wait at least 6 months after treatment ends. So he looked at me and said. Ok, Ill see you in two months. arghhhhh. he also said that we have to check and see if insurance covers it...I said yes, I already checked. They do. On my way out he said he'll look into the insurance end and he'll see me in two months. I left happy because I am able to do the sovaldi treatment. i also left pissed because I felt sort of dismissed and Im ready to get the show on the road.

deleted_user 01/09/2014

I actually think your doctor did you a favor by giving you two months before you start treatment. He is right that there is no rush. I understand your particular timing as far as wanting to have a baby but starting treatment is not to be rushed into. Let him get his office in order before you start because they are going to be your support and they need to know what they're doing. They need to have their protocol in order and the nurses need to know everything about it so that when you call with questions they know what to do. His office is your support team and you will need them to be at their best.

Hang onto the positive that you will get the new treatment. This is all good.

vabuttafly 01/09/2014

Thanks karymelly. You make a good point. That's why Im glad I joined this goup. Im glad you pointed that out.

CassyKate 01/09/2014

I just want to add, that I think it is safest to wait a whole year (the protocol says 6 months to a year, after ribavirin, before getting preg) after taking the Hep C Treatment, because the Riba is known to cause serious defects to the babies limbs, etc. It is very much worth it, to wait, to avoid a sadness like that.

Trissa01 01/10/2014

Happy for you! You will be starting treatment soon enough.
The labs & other tests do all the talking, but I am sorry he did not spend a little more time with you.Did he perform an exam? Check your liver/abdomen?
Keep the positive attitude going, you're doing great so far, its a long road with few short cuts.
I'm hoping maybe before 2015 there will be another treatment for me, it didn't work in 2009 & I'm a little older than you are, with cirrhosis, my clock is ticking too LOL
Best wishes

deleted_user 01/10/2014

Karamelly's answer is perfect.

Waiting an hour & a half, not so perfect. Did you mention this to him? Sometimes it's not their fault but the nurses or front desk people, and they're not aware of it unless you tell them.

Most of the time it's just 'tough darts', sit & wait!

thatwhichremains 01/10/2014

I am so happy for you, but also relate that feeling of sent to the end of the line, so to speak. At least you do get some time to prepare yourself physically, emotionally and mentally. It sounds like the new meds are much easier to withstand, but will still be taxing to some degree.

Just gotta keep thinking positive- in a year we'll (90% chance) both be cured!

=)

MrOSO 01/10/2014

I have mixed feelings on this. Sovaldi was not a highly kept secret that was just announced and now all the doctors are scrambling to try to figure out protocols, etc. Most of the information should be readily available since it's been in testing phase for a while. And others have started the treatment, so there are doctors out there that are ready. Seems to me the doc is behind the curve, but I may be wrong.

I also expect more than 4 minutes of a doctors time. You made the appointment and between your copay and insurance, paid the doctor a fair amount of money for a fair amount of time. In my opinion, 4 minutes is not enough for him to fully access your situation and answer your questions.

But I also agree that treatment is a serious consideration, and should not be rushed into.

Just a suggestion, but is there another doctor in your area? Most insurance companies have a doctor referral program, you might want to start there. A second opinion never hurts, and you just might find a doc that you connect with better.

Good luck,

Bob

deleted_user 01/10/2014

MrOSO, I completely agree that people should consider a 2nd opinion if they are not comfortable with the first doc they see. When I saw my first GI doc, I felt terribly uncomfortable with him but yet I was anxious to get the show on the road with treatment so I was foolishly willing to overlook all the negatives I was getting from that doc. Luckily, I was given encouragement by online support groups, such as this one, to get a second opinion and I did just that. My second GI doc was so much more informed and made me feel much more comfortable with the whole process so I "fired" the first one and I never looked back.

So, vabuttafly, if you were not comfortable with this first doc and if you have another choice close enough to your area, do not be afraid to get a second opinion.

Good luck!! :)

vabuttafly 01/10/2014

I have to agree that these drs should have been a little more prepared with a plan for treatment. As you said sovaldi is not a surprise. They knew it was in the pipeline. I have a major issue with drs sometimes because I feel that they constantly overbook. Sometimes I think we are all just a paycheck. Cash cows. I think he is knowlegeable, but perhaps he or his office is behind the curve. My regular dr told me about her friend who specifically deals with hep c. At my last appt I asked about her and today I received a note in the mail saying she set me up with an appt with her. Should I go speak with her? Am I just being an impatient brat? This dr is a gastro and the other lady specializes in hep c. Perhaps that would be a better choice? What would you do?

Trissa01 01/10/2014

Sure, why not meet with the other dr? Maybe you'll feel more comfortable. The time to change would ideally be before you start treatment.

deleted_user 01/10/2014

Since the appointment is all set up and she specializes in hep c, I say it's a definite yes, go talk to her. :)

thatwhichremains 01/10/2014

I see a specialist for my Hep C. I hope they're better informed, lol.

I say go for, too, if you can.

deleted_user 01/10/2014

I would definitely see the hep dr buttafly. It's hard enough to do tx, but to have one rush you & not be up on things makes everything worse.

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