doctor??

[Yellowfin]

I am in Brookings Oregon.  About 5 – 6 years ago I went to give blood and was later told they were not able to accept my blood donation because it tested positive for Hepatitis C.  I went to my local family doctor and was told to not worry about it as lots of people have hepatitis and never have complications.  About a year ago I went back to him because I feeling fatigued and just not normal.  When he did not find anything wrong I asked again about the hepatitis C (keep in mind I knew nothing about the disease then) and I had to remind him of our discussion a few years back.  He did not recollect the discussion but was seriously concerned and told me many people end up with liver infectious and possibly could be fatal.  I went through the blood test and the meantime began reading about the disease.  The result was that it was positive and had a count of 19,000,000 whatever.  At the time there was some changes going on in my life and chose to ignore the problem.  I have continued to live a normal live since.

Now the fatigue is getting worst and I think I may have no choice to get it taken care of.  I have little trust in my local doctor for serious medical advice.  Medford, Grants Pass, Coos Bay or Roseburg are the closest medical communities.  Does anyone have any suggestion on where to go or someone in southern Oregon I can contact to ask?  

[acaba]

I'm also a southern Oregon resident and have dealt with Oregon docs from  Ashland/Medford to Portland.   You can find a gastroenrologist most anywhere who can do a biopsy at a local hospital (the hospital will produce a report - start collecting a copy of every test etc. that you do, along this journey).  The only hepatologist docs you will find  in Oregon are in Portland, practicing out of  O.H.S.U., which is also the transplant facility, and they are adjacent to the VA hospital and work together, so that may be of great benefit to you.

My experience with O.H.S.U. was  dissappointing at best, and became life threatening, but hey, that was me; I've never spoken to anyone else who  has been treated there, but I imagine they have a good reputation.  I  know that they have just started doing tx treatments there.  So, that is one path for treatment that you might consider.

Get the biopsy; they're really no big ,and it's the only way that anyone will be able to determine where you are at.  If you are in relatively good shape (according to the biopsy, not by how you feel, or your labs) then you might consider waiting a year for the interferon/ribavirin-free treatments that sound  as if 'they are just around the corner'.

As for me, O.H.S.U., in their infinite wisdom, did not list me at MELD-15 and instead told me to come back in 6-months; 6-weeks later I found myself in a hepatic coma in Tennessee!  4-weeks after that I was not only listed there but transplanted as well.   My post-transplant, after care switched back to O.H.S.U. for the past 2-years and unfortunately it's been sketchy, at best.  Now, I'm facing recurrent HepC and also need to treat, sooner rather than later.  I'll be moving to the Bay area to do so...

All that horror  could have been avoided by more timely intervention; so don't freak out, but I'd get on becoming informed and find yourself some excellent docs to work with.

Best of luck to you

[ericalin]

10 days after my 20th b-day i was in a serious car accident but i lived,layed in a cement culvert for about 2 hrs. befoe we finnally got a ride---lol. without too many details i must mention david johnson who i had met thru a friend that night,that night was his last,God Bless. i had a few problems mainly they removed my spleen and I broke my left hip,femur,and  knee. o.k so the doctors were excited about all the breaks in my body and what i was able to teach!!!  After a few months i go home with screws in my hip--they did not hold. i went to give blood for a total hip replacement. in the mail i recieve a letter saying my blood was not going to be used i tested pos. for hep.C. i call my only doc. at the time(orthopedic)  he told me he also would be positive,a false positive,o.k. o.k. after a few surgeries like you,i was having problems with my blood clotting and the numbers u spoke of were off the charts as well. normal might be 100? so i left the teaching hospital with a life long test. i chose to ignore it,about 8 years later 93ish i had a biopsy-they said my liver was looking good. i told the intern my doc. i did not want treatment the side effects,and feeling fine,ah. my doctor told me if i was going to do nothing at least take milk thistle. anyway here i am 28 years later ready to return and get some control back in my life. even if your feeling wonderful in the back of your mind you know,i know. so plz.with all the knew treatments at least get your biopsy and go from there.Always try your best to be positive that will take you a long way!! Bless you i`ll be thinking about you wondering..... take care to everyone with this silent killer .....ericaX

[Bill1954]

Hmmm… it’s hard to get anywhere from Brookings!

Regarding locating a treatment doc; I assume you were diagnosed by your Primary Care Physician? Has he offered you a referral yet? That would be my first suggestion. You’ll want to schedule a consult with either a Gastroenterologist of a Hepatologist, who will guide you through this process.

If neither of those specialties are available in Brookings, and they may not be, you might have to go over the hill to Portland or Eugene. Another option would be to contact the University of Oregon, Eugene, and ask for Gastroenterology. See if they have a Hepatologist that would be willing to sign on as your treatment doctor “remotely”; overseeing the nuts and bolts of treatment, with a local physician coordinating the labs, and providing local support.

As for as obtaining life insurance at this point, you will probably experience difficulty. Additionally, if you’re solely concerned about you’re wife’s welfare, you’re probably getting ahead of yourself. This disease is only fatal for a small percentage of patients, and you don’t have enough info yet to determine if you even need to undergo treatment.

You might also try my doctor’s office in San Francisco, and see if they would consider “remote” treatment. They are a cutting-edge treatment and transplant facility; they also have outreach offices throughout Northern California, including, I believe, Redding.

Here is their contact number in SF:

California Pacific Medical Center
[phone]
http://www.cpmc.org/advanced/liver/

Additionally, review the following site; this will give you an excellent overview of this disease. Just scroll down and click on any item of interest in the blue box:

http://www.janis7hepc.com/

Best of luck to you in your travels; read and educate yourself prior to making any decisions regarding the management of this disease.

Take care,

Bill

[fightit]

I wouldn't be too concerned with the VL (19,000,000) right now, that number goes up and down. While it is important, the condition of the liver (done with a biopsy) is of greater importance. A Gastroenterologist or a Hepatologist (liver specialist) is who you need to see. Keep reading all you can, the more you know the better off you will be. Ultimately there are many decisions you will have to make

[Yellowfin]

Sounds like most everyone thinks I need to get a biopsy.  I am going to attempt to purchase some life insurance first.  

I really don't know much about this disease yet, except waht I have been able to find on the internet. Can any tell me is 19,000,000 ?? really high or average or what?

[DoinTheTime]

I am from roseburg, have checked out the docs here and close by, in my opinion you will have to look to larger city portland, eugene, I like my pc doc, and am willing to go anywhere in the U.S with biopsy and med records, then hopefully find a real good hep specialist,s that will work with my p.c.
doc thru e-mail, fax phone whatever to treat, so any ideas from the forum might help us both out,

[buzz01]

As kcrandy said, you cant change what happened long ago...  Your local fmaily doctor is ignorant....drop him.
Get the yellow pages out, or start online searches for "HCV in Oregon" or "Hep C in Oregon" or again like kcrandy said, contact teching hospitals near you. You need to get in to see a Gastroenterologist (GI) doctor ASAP. Do not delay.....

[kcrandy]

i am sorry to hear your doc was not that good.  you can not change that issue but you can start by seeing if there is a teaching hospital in your area they might be able to either treat you or get started in the right direction.  you need to find a gi specialist in hep c.  i am not from your area so i can not help with the oregon area but if you wait somone will read your post and will respond this is a good group and we all are either getting treated or have been treated or starting treatment or just like yourself looking for answers on how to get treatment. dont give up you are on the right path.

almost forgot if you are a veteran you can get tx thru va.  also you can do a search for hep c studies and then do it by your location in your area that might help to.