Ok, Ok..I'm going to the Doctor

[Yellowfin]

Well, I just called a Hepatologist in Portland, OR, which is about 7 hours away, but that is closest specialist.  Anyway, they are going to wait for the medical records from my family physician and them make an appointment.  I have an appointment for tomorrow morning with my family physician.   Kind of scarey, but here goes.  The last time I had blood work was about a year ago and my viral load was 19,000,000.  

Thanks everyone.

[wed1942]

Glad you got your appointment lined up. Hey, get copies of all of your labs, etc and then you won't have to wait for your doc to get it to the other doc. I go with all of mine in hand, including a typed up history of my life. I even have gotten copies of the CTs, MRI's etc. They can put them on CD's now so you can take them to your doc. I was able to show my liver spec. things from as far back as 1969 when I had those transfusions. I've never had elevated liver enzymes until last year and they were only slightly elevated then. I was blaming it on some medicine that I have been on for my heart. Sure never expected to find out it was the Hep C. My enzymes had quadrupled in a year so they did the other testing and now here I am.  Helps to give them as much info as you can.
I guess I was really lucky. I got an appt with this liver guy really quick. The GI doc I was seeing already had ordered all of the labs, ultrasound, etc. so I just took results to the other doc. I'm going to actually take him the slide from the lab that is the liver specimen from the biopsy so he can see it himself. He asked for that.
I sure hope it doesn't take 6 months to get started on treatment. Wonder how come merryBe thought it would be that long. It's been almost two months now for me just getting all of the tests done. I think the GI doc would have started me on treatment now but I want to see what the liver guy says and will probably stick with him he might be more up on the new info out there and I want to be with whoever knows the most. He was even talking about starting a new study soon using that Telaprevir. Something that I told my GI doc I'd like to at least find out about.
I hope you like the new doc. Maybe he can work something out that he works with your family doc so you can get all of your lab work done at home and he just makes the major decisions. He can run the show from a distance maybe. Hate that you have to go 7 hours to get to him.
I guess you and I are going to be just about on the same time frame with all of this. It is scary. I'll be doing this alone cause all of my kids have moved out of state so that makes it even scarier. Although I don't want to put them through this anyway so maybe it's a blessing that they have moved. Keep me posted. We'll have to keep each other up on what's going on and what we find out. I go to the liver spec on the 21st so I'll let you know what he says now that I've had the biopsy done. It turned out to be exactly what he predicted so I'm sure the next step for me will be treatment. Just hope they can get the ball rolling fast. Talk to you later.

[loosenup]

SVR.....sustained viralogical response.  (I think I spelled the viral word right?)  What this means is it's a long term positive result of treatment.  I call it cured !!!

[Yellowfin]

So it sounds like you thought Schwartz was ok, right?  Forgiveme, but I don't know all the acronyms yet...what is SRV?

How long do you think I should expect to be on treatment?

Thanks again.

[merryBe]

that's who I choose for my 2nd opinion when Benner wanted to stop treatment. He was nice but not able to be very helpful as my clinic had not sent him all the files they were supposed to...so like he didn't have my biopsy etc.

However, he did have a more positive attitude about extending tx than my doc had...he said that 20% of late responders still go on to SRV in a recent study he hadn't had time to read...but at least he admitted new research was on his desk.

since most docs are stuck on numbers from years ago and are not fully abreast  (liver guys are the most busy specialists of all right now) it's not surprising therefore, but it was good for someone to at least admit the earlier numbers maybe wrong.
So that was good at least. Shwartz did tell me that the waiting list to begin treatment with him was at least 6 months, which is similar to everywhere else in town.  So meanwhile get your dental work, shot's for pneumonia, flu, hep A and B, and anything else done that needs doing. You will want all this out of the way before starting tx.
mary

[loosenup]

I don't even know how to get email on here.  I'll try and figure it out, but I'm blonde.  Hey, that excuse has worked multiple times!   My main sides have been fever, out of breath easily, have yummy sores on my face, sides of lips cracked, sores in my mouth come and go, can't eat spicy foods any more, blah blah blah.  For the end result, it's worth every bit of it.  Prior to tx, I worked over 50 hours a week, dropped to 30 hrs and now down to 15 - 20 hrs.  Work at least takes my mind of my sides, but some days I can barely make it to the mail box.  I am lucky that I don't financially have to work full time, especially that I'm alone as I don't know how I'd manage if it were different.  Not everyone has the same sides, and some people don't have it bad at all.  I probably falter in the middle.  I know the unknown is scary, we all felt the same way at the beginning.  You're not alone, just keep coming back here!  We'll get you through this.
Diana

[Yellowfin]

Dr. Jonathan Schwartz, M.D., 3181 SW Sam Jackson Park Rd

I looked him up on the internet.  Let me know if you have information.  It will likely be a few weeks before I get the blood work doen here and sent to him to review before going there.

Thanks

[merryBe]

so who did you get??? I'm in Portland, so know a few names.
Can help you with clinic info/ins and outs if it turns out to be the same  place.
you can write me privately if you like concerning this.
mary

[Yellowfin]

I just sent you an email, but you can ignore it.  Tomorrow's appointment is only with my family doctor and I want new blood work as it has been over a year since it was done.  

I am worried about being able to work during treatment.  Have you had severe side effects?

Guess I am concerned about the unknown.

Thanks

[loosenup]

Awesome you made an appt.  Hopefully your hepatologist will be able to work with your family physician so you won't need as many 7 hour trips.  From what I've learned here, a hepatologist is the best to see as they are more current.  I was referred to a gastroenterologist and at that time didn't know the difference.  I'm still with him, reluctantly, but at onset had I known the difference, I would have made the 5 hour trip to Seattle.  Let me know how tomorrow's appt goes.  Best wishes!!!
Diana