get a good doctor!

[eddiemed]

Just felt the need to express my experience with Gastro docs, and the difference in their experience with hep c.
My family doctor originally diagnosed my hep c, and directly referred me to the only local gastro in town.  This doc, (i am trying to be nice here) has no right calling himself a liver specialist. He ran me around in circles for over a year, and never had a liver biopsy done. He treated my symptoms (itching, tiredness, fatigue, etc.) but kept saying that he didn't "feel" that treatment was necessary at this time... He even put me through "therapeutic phlobotomy" (weekly blood donation) to reduce my iron levels, which were extremely high. Nothing was helping...
I had done tons of research myself, and knew that the two new drugs (telapravir/ bocepravir) were available, and being used, but the doc said he needed to "learn more" about these drugs before he could recommend them to anyone... I became upset with him when he kept repeating the same test, with the same bad results, and not doing anything new.  I fired him, and located a gastro in another town 70 miles away with years of hep c experience. He immediately ordered a liver biopsy, and found i am late stage 3 fibrosis.He directly recommended telapravir triple therapy, which i started as soon as i was able to secure the means and money to do so (within 3 months). Needless to say, the first gastro may have waited until i was in stage 4 (chirrosis), or dead before I got tx for hep c! So, in conclusion, if your doctor is wasting time, and has not ordered a biopsy, then you need to find another doctor! time is not on your side, and you must be sure of what stage of damage you are in, and be sure that your doctor knows what he is doing with this treatment! There are very specific rules that apply, and it is crucial that they are followed to the letter...  take charge and good luck to us all!
PS - I am just past week 12 of tx, awaiting my labs, which i expect to be undetectable... liver function has improved dramatically as well. I just wanna punch that first doc in the nose! there... I'm done!

[HectorSF]

'This doc, (i am trying to be nice here) has no right calling himself a liver specialist.'

A Gastroenterologist is not a liver specialist. Gastroenterology is a combination of three Ancient Greek words gastros (stomach), enteron (intestine), and logos (reason).
A Hepatologist is a specialist in diagnosing and treating liver disease and related areas.  Hepato-meaning ' liver' and suffix meaning 'word' or 'speech'

A gastroenterologist is a physician who specializes in the diagnosis and treatment of diseases of the digestive system. A gastroenterologist has undergone a minimum of 13 years of formal classroom education and practical training before becoming a certified gastroenterologist. Their training, education and experience includes a wide variety of diseases and conditions including ulcers, acid reflux, GERD, heartburn, irritable bowel syndrome, Inflammatory Bowel Disease, Crohns, and Colitis, celiac disease, colon cancer, hepatitis, and other liver diseases. What any particular diseases a gastro focuses on is dependent on his or her training, experience, knowledge and personal interest. As many people here can attest, not all gastros have expertise in treating hepatitis C.

As Idyllic mentioned, there are basic questions that should be asked before someone chooses a doctor to treat their hepatitis C.
'What is your experience and knowledge of treating patients with hepatitis C?'
'Have you treated patients with the new antiviral drugs?'
'What side effect can I expect and what will you do to minimize any side effects?'
'Under what conditions would you stop treatment early?'

Without knowing the particular doctor's practice of treating hepatitis C unfortunately misunderstandings or disagreements can occur during treatment when the patient is very dependent on the doctor. It is best to know up front what a doctor is willing to do and not do. For example about anemia. Will he reduce ribavirin, use procrit, a combination of the two and at what blood level will he stop treatment?

Yes, all doctors are not equal. As with any profession, there are the few world-class experts, most are average and a few are terrible. Over the years here we have seen all levels of doctors here on this forum. Some people have great experiences were they feel the doctor supports them in every way possible. Then there are people that have had terrible experiences were the doctor have not followed proper treatment standards and doesn't communicate at all with the patient.

In the end it is' buyer beware'. Committing to 24 or 48 weeks of a sometimes difficult medical treatment is something that no one should take lightly. It is worth shopping around first in hopes of making the treatment experience as supportive and successful as possible.

I am glad you have a good doctor now.

Cheers!

Hector

[eddiemed]

I am sure that I am not the only one with these experiences, and this is a condensed version of my story... in reality i was diagnosed over ten years ago, but the office failed to inform me of the results, afterwhich, that doc left town, so i never got those results until i asked for all of my records years later!  Anyway... things happen for a reason i suppose!

Problem is I live in a smaller town, only about 70k people, so doctors are limited here, and always changing.  With only 1 gastro, he is the man, only problem is, he's a damn fool! (like most docs that end up here).  I felt very alone, should have looked for more online resources, but just didn't know where to start... so now I drive 70mi. each way to see the new doc, but it is well worth it...

[Idyllic]

First Doctor Visit, Dosage and Questions

http://www.medhelp.org/posts/Hepatitis-C/first-doctor-visit---dosage--and-questions/show/1578685

Questions for Newbies on first visit
http://www.medhelp.org/user_journals/show/360204/guestions-for-doctor-for-newbies-to-tx?personal_page_id=17823


I know there are few more that are comprehensive yet simple that might have prevented you from wasting time with such a Bozo!

Hopefully others will contribute and this post as well as the on going posters related to "Good Doctors" will spare others what you went through.
Hang in there♥

[eddiemed]

Posted in your thread, now posting here, the GOOD DOC:

Southern Oregon:

Dr. Gregory Winters, MD

Gastroenterology Consultants, PC
Located in Medford Oregon
[phone]

website:
http://www.gcpcmedford.com/gc_physician6.htm

[beeblessed]

Hi there.  Thank you for sharing your experience.  That bites! !  Since joining this forum, I have seen reports on good docs, stupid docs, guinea pig docs, too busy docs and uneducated (as far as treatment) docs.  What I have learned is that if you feel a 'red flag'....get a 2nd or even 3rd opinion if you need to.  It's YOUR life and if they don't have experience, they should refer you, just as in any other practise.  Years ago, I went through a procedure over and over, only to have the problem reoccur.  Finally went to a different doc, was referred to a surgeon who solved the problem in one procedure and the problem never returned.  So glad you finally got to the right person but it's a shame what some docs put us through for what seems like multiple billing opportunities.  Yeah, I wanna punch your doc in the nose for you!

[Idyllic]

Sorry you had an unpleasant and unproductive experience. I am not sure the percentage of GI's that actually treat HCV but where I live (which is a major city) the number is very low. Maybe they think because they keep up with journal articles or continuing education that they have the chops to actually treat a patient. Who knows.

Back in 2003 my first GI admitted treating HCV patients was not cost effective for her practice. Ironically, 9 years later treating HCV is supposedly one of their specialties. With no new staff addictions I am wondering where and how they gained the experience to promote themselves this way.

There are a few posts titled, "Questions to Ask On Your First Visit"
I think a few people even have it in their journals.
It is really a simple group of questions that enable you to gain an insight of just how experienced the doctor is and how the doctor intends to hande rescue meds as well as establishing a communication channel

I truly regret you learned this all on your own and did not see this post as I am certain it would have saved you a boatload of time, money and frustration.

I will see if I can find a few. I wish this were the type of forum that would allow permanent "Stickie" types of posts that have general info related to to HCV that rarely changes.

[orphanedhawk]

Of course you're right, a good doctor is very important. Sadly there's a lot of bad ones out there.
A couple of months ago I started a thread so we could help people looking for good docs.( Maybe we also need one for the bad ones, who to avoid)

If you want to add your new doctor please, go to the link.

http://www.medhelp.org/posts/Hepatitis-C/Who-is-your-good-doctor-/show/1715783