I have touched on this subject before with an earlier blog, but have witnessed more miscommunications and failures when it comes to to treating patients properly. It is time to dig deeper into the subject matter.

What exactly do we expect when we go to a doctors office?  This is a topic I feel we all really need to get clear in our minds. Going in for treatment of a common cold versus going in for treatment of a life-threatening disease may be viewed in our minds on different scales. Would we be more understanding of just what we as patients can expect?

When going through the mental acceptance of a diagnosis, you may also experience the stress of figuring out what to do next. You may wonder if your doctor fully understands waht hepatitis C and its treatment does to the body. Our trust in them and their “expert” advice is what we depend on.  After all, they have the M.D. behind their names.

If one was to step back from this thought and fully think about all the possible diseases, viruses and all the various aliments that could be going on with in our bodies, is it really possible to expect a doctor to be knowledgeable and up-to-date about every possible diagnosis? 

I saw a post on facebook not but a few weeks ago that read... “searching your symptoms on line is the fastest way to get a cancer diagnosis.” By the same token, if we are going to a bone doctor for a heart issue I really don’t think the treatment outcome or diagnosis would be the same.  Is it really fair for us as patients to expect our family doctors to be experts at every diagnosis?  The answer is NO! 

When we go into our doctors and have a problem that is out of their expertise, we usually get referred to someone within that specialty. But lately, I’ve witnessed patients who get diagnosed with hep C by a family doctor, followed by a long trail of unknowns, and not getting proper information about hep C. They may only get vague information, such as cut back on drinking (not suggesting to  them to fully suspend it), eat right, and get rest. Basically they are telling these newly diagnosed in so many words,“Take two and call me in the morning.” Yes I know that is a figure of speech but when these patients are contacting my foundation in tears, feeling alone with no help, support or guidance from their doctors, it gets rather frustrating on our end. These individuals are getting lost in the shuffle. Many are remaining there not knowing there are new treatments to cure hep C. They may be unaware that what they are drinking or eating could be doing more harm to their livers.

Now with more advertisements about hep C. local medical offices are getting bombarded with people wanting to be tested. Their primary care providers may not have the capabilities or expertise to treat these patients properly. Some are in rural areas where there isn’t a nearby specialist. Some local doctors are having to figure out just how to treat these patients and many don’t have the time or resources to fully learn the importance of these new treatments. Some crazy treatment options are being prescribed; misinformation is getting into the hands of those seeking a cure and treatment. I have witnessed a few being placed on treatment with out proper physicals before hand, leaving life-threatening issues that could have been caught if that doctor would have known a “pre-treatment” physical was needed.
There are now many organizations out there seeing this issue and doing their best to go out and train and help these medical professionals by educating them with the up to date treatments, proper usage of these treatments and helping them with the demands being placed on them.

What can a patient do if they feel they are caught up in this vicious circle of events?  It is my suggestion and please note: I am NO Medical doctor, I have NO medical degree of any sort but I am a PATIENT as well and I DO have experience within the liver community and am in contact daily with those suffering from this disease.) It is my opinion and suggestion to seek out a support group whether you can find one in person or one online.  The Bonnie Morgan Foundation for HCV has several sponsored support groups that are private.  There are also those through Hep Mag and the American Liver Foundation that I highly recommend as well. Begin learning and reading up on the new treatments, learning what is the best diet, what works best for the fatigue and joint/muscle pain.  Basically becoming your own advocate.

If you find that your doctor just really is not “up” with information about HEP C, seek out another doctor immediately.  I suggest seeking out a specialist such as a hepatologist or gastroenterologist that specialize in the liver.

Stand up for your health and your cure. Don’t settle with information that can’t be backed up.  Ask questions, seek the answers. What you will find is that most online support groups offer personal experience and advice that can provide you with a direction.  Many have lived through this nightmare and can offer experience that would make your path shorter. Many have been going through this for years and already know more about the disease than many doctors. By no means am I saying take all the advice to heart and avoid what your doctor is saying but be your own advocate and learn all you can.  Be prepared for those doctor visits with questions you have, make sure you are getting the answers as well. If something is not registering clear in your mind, be your own voice for your personal care... Stand up and demand answers.

“Not without a FIGHT! ~HCV~(c)”  Together WE are STRONG!