Hep C Discussion Forum

Hi Rob

I was living with the virus for 30 years before being diagnosed and starting treatment. As mentioned, give up alcohol, I was told it was like adding fuel to a fire, eat healthily and stay positive. After the initial panic wears off you have the time to make a decision that is the best for you and as Tig says, there is never a better time to treat with new treatments emerging rapidly.

Thanks So Much Tig, Aprileee, and Enavigo,

I'm so glad I decided to check out this forum, the support is unreal.  I'm definitely going to be calling tomorrow to see if I can at least find out my Genotype from the Medical Assistant.  The results have definitely got to be in by now. It's been nine days and the lab tech told me it usually takes 3-7 days at most.

This has definitely been the hardest health challenge ever and I can only imagine the journey many folks on this forum have endured throughout the years in comparison to myself.  On a positive note, I have learned a lot about myself and this has already made me stronger.  Material possessions are taking a back seat so I can better appreciate my priorities in life.

I consider myself lucky to have found out about the disease in my blood years earlier than I would have without donating blood.

You guys are a wealth of information!  I appreciate you all.

-Rob

Hi Rob,

I really can't add much more than has already been mentioned. The advice is spot on and from experience of my own, quite accurate. I learned that you can over research some things, to the point it all but drives you nuts! Concentrate on good, current data, from viable sources and you'll rest better at night. I've been there and done that!

Regarding the costs involved, the worry can be daunting, but until you have a course of treatment established, try not to stress on the money. Many insurance companies are starting to realize the value of good, early treatment with these new drugs. While the costs are high and prohibitive in some cases, they are realizing these short, high dollar treatments are actually less expensive than the longer treatments with less expensive drugs. They're learning that there are many more costs involved in long term treatments, like salary loss, additional testing, doctor's and nurses time, additional treatment for side effects, and on and on! There are also newer treatment regimens (drugs) on the near horizon that will change the standards of care again. With each change, the old and current treatments make way for the new and improved. That includes changes in costs and availability as well.

One last thing on costs. We have a thread in the Knowledge section that deals with payment assistance programs currently available. These programs and organizations are there to help with all costs of treatment. We have several members that have utilized these programs and have received considerable financial grants/assistance from them. Take a look and see what's available. I hope the information and help available will help put your mind at ease regarding the finances. These people want to help and they will really go to bat for you. Do your best to be optimistic, there has never been a better time to treat! 

Tig

Hey Rob....

Fairly certain you will get a slew of different responses here. Sorry to hear about your doc going out on vaca, are you able to get your results from a nurse or do they really expect you to wait until he gets back and "catches up"?

As far as "when to treat" ... When my doc offered the option I of course discussed it with my fiance and thought about all the things coming up (building a house, work travel, etc) and basically what I realized is this... There's never really a "convenient" time to treat so I'm just going to jump right in. I understand your concerns with the summer coming up but keep in mind even if you started treatment today, your body doesn't return to normal the day you stop. It takes a while (sometimes a few months) for the drugs (depending on what you're on) to leave your body. Riba for example can linger 3-6 months and while you slowly improve as time goes on, it still takes time. Then after the summer you will have the holidays approaching. See what I mean - there will always be something. BUT, only you can decide when is right.

As far as time frames... I was born with HepC in 1983. I was diagnosed in 1996. My adoptive mom refused treatment for me back then as I believe at the time it was only Interferon for like a year with maybe a 20% success rate. It was ridiculous. As I got older, all the treatments still involved interferon which I really didn't want to do. My LFT's were continuously normal and my docs had no reason to believe I had any damage going on to my liver but my docs also admitted that they didn't have much or really any experience in treating people who were born with it and there wasn't much science or focus on people born with it. The point of that is they outwardly said they didn't know if I was "just a carrier" (which we now know isn't possible) or if my body had adjusted and learned to live WITH it because it never knew how to live WITHOUT it.  I guess that all makes sense but it's still silly how little they knew (or still know about people born with it). I currently see a doc at the Transplant Center in a major US city - these are the people that do nothing but liver disease/transplants. I asked my doc just last visit why there isn't more out there for younger people. You can spend hours online and documentaries/interviews and such are all baby boomers. I understand they are the largest affected population however I feel it somewhat alienates younger people going through the same struggle. My doc's response was just that, the population thing. It's geared toward the greater population. He told me that they have hundreds of patients as they are the place to go for anyone in SW North Carolina or NW South Carolina and while they have a handful of patients in their 30's or under (all of whom contracted it as kids/young adults through medical transmission), I am their only patient confirmed to have been born with it.  Even he said he has no idea if that explains why despite this beast assaulting my insides for the last 31 years, my labs don't reflect that.

I didn't actually find out my genotype until last year, early February 2013.  I again held off treatment in the hopes an interferon free treatment for GT2 would be approved. And sure enough, here we are - I am on treatment.

As for your insurance covering and then not covering - yes that will be plan specific. We do have a member who had months 1 and 2 of 3 approved for off label and then they denied his 3rd month and he had to fight tooth and nail. 

But again, back up your stress train here a bit. You can't stress over what may or may not be approved until you know your treatment protocol. And you can't stress over which treatment you will end up with until you know your genotype. If I may offer one piece of advice when it comes to this entire scenario... there are millions of what ifs, even after you start treatment (what if my WBC count goes up, what if my HGB gets too low, etc).  The best way to slay this dragon is to take it one step/battle at a time. It's the best way to keep your sanity! 

Keep your head up... kiss your babies and go call your doctor and demand someone give you some information!!    (or you don't have to but my Riba rage would be all up on them right now!)