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please help
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please help

I see you guys talking about tx alot could you please explain to me what this is? anyone, I was diognosed with Hep C five years ago. I also have thallasemea which means I am not eligable for the interferon or the rivo.
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Avatar_n_tn
trx is short for treatment and generally refers to Interferon&ribavrin combo...couple of people here share your condition and are trx'ing( izat right?? lol) Mr BeagleBaily,,IceBOY   may be able to advise& direct to info...GOODLUCK,tell us more about stats??
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Avatar_n_tn
ok this is what what my paper work say's; Hep c RNA Detected A, HCV Quant,IU/ML-43500 H, HCV Quant,Log IU/ML-4.64 H.
My ultrs sound says liver and spleen are normal in size. No liver masses or ascites are found. the gallbladder shows no stones or wall thickening. the bile ducts are not dilated. Common duct measures up to 4.8 mm in diameter. the pancreas, kidneys and aorta are unremarkable. whatever that means, I really dont know exactly how acurate a ulta sound is. I had a liver biopsy in 2004 and they said only a small amount of the liver was affected and because of thallasemea somthing that descises itself as anemea or is a part of that family they say I am not able to take interferon or riba and the only thing I could do was change my lifestyle start taking milk thistle and pray. I have changed my lifestyle and its hard to believe that I can not be cured starting to ask alot of questions now and become more aware..please help
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Avatar_m_tn
welcome,

Don't let them tell you that you can't treat.  I'm a 2B with Thalassemia and will do shot # 15 tonight with 9 to go. It's not easy but I'm doing it.  About 4 weeks ago my HGB dropped to 7.1 and I opt for a transfusion so I could stay on full meds.  I also take procrit which is what we call a recue drug to get our HGB up.  Many on tx are on some kind of recue drug.  my HGB is now 8.3 and it need be I'll get another transfusion.
You need to find the right Dr. either a gasto or one that specializes in hepatitis.  What state do you live in?  You said you were A,but what geno type are you?  Geno's are 1A 1B, 2A 2B,  3A 3B, or 4A 4B.  Also what is your viral load in numbers?  mine before tx was 318,000 and at 12 weeks I'm undetectable.

Here is a list of some of the words we use and their meaning:
PCR: viral count
WBC: white blood count
ALT: liver enzyme
AST: liver enzyme
TX: treatment
SX: side effects
BX: biopsy
HX: history
VL: viral load
EVR: early viral response
RVR: rapid viral response
SVR: what you want  = substained viral response

Write these down so you'll know what we are talking about.

beagle
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Avatar_n_tn
my results say I am 1a/1b geno type. I think my viral load is 4300 HCV Quant, IU/ML???? if not could you please tell me where to find my viral load?
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Avatar_n_tn
my viral load I thikd is 43500
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Avatar_m_tn
That could be your VL,  it would say viral load.  Where do you live?  Also what kind of Dr. are you seeing?

Beagle
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Avatar_n_tn
I live in Eugene, Oregon. My doctor works at a clinic and specializes in internal sports medicice, and right on the same grounds is a urologist institute and a gastrology office downstairs.However I did just change doctors and this one does seem to be give more clarity than the last and did addmit to not really specializing in this particular field but mentions not hesitating to refer to the gastrology downstairs or anywhere else if nessesary. I was going to go ahead and check him out to see what happens but wont hesitate if I need to move on.
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Avatar_n_tn
What kind of a doc would you recommend in my area ? is there discrimination against poverty, or am I able to be treated regardless of income?
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Avatar_m_tn
There better not be discrimination againist poverty.  I live on the east coast so that's out.
You need a good gastrologist or hepatitis clinic.  I have a gastrologist that also specializes in hepatitis. This is what you need and we need to find out the web site to find one in your area.  There are hepatis clinics all over the country.

To all-- we need a web site to find a Dr. in this area of the country (Eugene, Oregon) or any other help you guys can offer.

Beagle
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Avatar_m_tn
Portland has a teaching hospital that has a couple trials going on. Not quite sure where in Eugene, Oregon your from. But i think its a good hour and 15 minutes. If possible that would be your best bet at least for a hepatologist for a consult.
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Avatar_m_tn
Kalio thanks for the info on commitment to care, brain fog couldn't remember.

Spirit-- here is is the web site for free procrit to keep your HGB up. and phone #-- 1-800-553-3851
                   www.procritline.com
the dr. you chose will have you see a blood speacialist to watch the Thalassemia and you will need the procrit.

beagle
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Avatar_m_tn
Heres a link to the trials.

http://www.clinicaltrials.gov/    If you go to that site just type in hcv,portland.

If nothing else they may be able to provide you with a good hepatologist... Best to you
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Avatar_m_tn
Is that the area your from? Always thought it was California.
How are you doing tonight?  Still can't get rid of this swollen ankle and NYGirl e-mailed me that she hurt her ankle falling up the stairs.

beagle
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Avatar_m_tn
nope im from the midwest, Indiana. Why i don't know
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Avatar_n_tn
Thank you everyone for being so generous! and I hope that ankle heals too, I will pray. I love the openness and clarity in this place It's a breath of fresh air!
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Avatar_m_tn
Ha guys, was wonderin about d-ray. He is from tennesee, after the tornados ,I,m hopin he is ok.

Dale where are ya?

Dyce
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Avatar_m_tn
yup, doing the ice thing for 2 days now.  Will be back in NY tomorrow, if not better will have to see the dr. I guess.
Only NY could fall up the stairs, she's been having a tough few weeks.  Hope she's doing better tonight.  
So it's Indiana, don't know where I got Ca. from, but with me any thing is possible.

Beagle
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Avatar_m_tn
hey guy, heard nashville got hit the hardest. Don't know where dale is at in tenn. So how you doing?
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Avatar_m_tn
Your right and now that I think about it he hasn't posted in days.  Saw cajun sent out a message to him to see if he's alright but he never answered.

Dale if your out there write home and let us know your alright.

Beagle
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Avatar_m_tn
I.m doin better sir thankyou. Dale is from memphis area, man this is bummin me out. Maybe the phone lines are knocked out or somethin, hope that cat is ok.

How are the sx's today?

Dyce
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Avatar_n_tn
speakin a which, where you been can man??  Hope you actually had some fun.... Getting close to dairy days here (kid you not!!), triathalon- they run through the hatchery, then bike somewhere,then they have a race across the lake in milkcarton boats....

I think Dale_Ray is in memphis.... my dog is from nashville... or is it the other way around.... lets just hope at worst its a power thing.

my boy moved to Manhattan ks (military), and they just had the first siren- he's in his OB-gyn rotation- had a woman they were inducing that DID NOT WANT TO GIVE IT UP, when they had to evacuate all patients to the basement, halls, etc.  Guess my grandbabies were pretty scared at first...

Indiana... huh, spent some time at Ft. Ben harrison, they hired us as pinkertons for drag racing (of course, I was not a fan)... 1976 nhra finals... big daddy don garlitz and cha cha ...still have the tshirt...Oh yeah, I was "watching" tickets for the reserve seating... some how, my section was just filled with young cute men.... magine that...



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Avatar_m_tn
Been busy, did grt a few laughs on the drinking to much water an only drinking 1/4 your body weight on tx. The best was the dangers of toothpaste by The Mouth Physician. Some people thinks cause its on the net then it must be true.
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Avatar_m_tn
Man yur right, if I listened to everthing on the net, I'd have to get in 1 of them bubbles and have the wife sterlize everything before it's given to me. I drink tap water , eat ggreasy food and I'm pluggin along just fine!

Dyce
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Avatar_n_tn
your from Portland? Hey we are  (used to be) neighbors!!
I grew in Seattle!!!!!!!!!!!Puget Sound, all the islands, fishermans market, and lots of hippies and street musicians.
Please dont ask how I ended up here,...sure do miss the NorthWest.
Glad to see you postin, I miss you when your not stirring the pot!!
lilmoma gotta go to bed: I took my Lunesta (loony I call it)this stuff knocks me on my butt, and I never have any recollection of what I say or do once it hits. I read where it can cause amnesia, I tell you true,...I get it every night. Next morning prolly wont even remember postin this
neener-nite
lilmoma
PS Thank you everybody for all your great advice about my water intake, I will be very careful, as this was a miserable week-end.(if any of you would) I could use a prayer for tomorrow, I really am a fraid to go back to work. Maybe I am just over reacting,.................still
lilmoma
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Avatar_m_tn
Lilmoma, take care there tomarrow at work and maybe ya should talk to your doc on the bloating your experiencing. your included n my prayer everynite but I'll do a double prayer fer ya tonite!

Dyce
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Avatar_m_tn
You keeping that ankle propped up with some ice on it?

Poor nygirl shes taking it tough, only she would fall UP the stairs. Shes a sweetie.
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Avatar_m_tn
Just saw on the news they got hit again last night and there up to 320 tornados that touched down.  Still no word from dale and the others that are MIA, I don't like what I'm seeing on TV.  This is scary all the damage and who knows how many lives have been lost till they start to clean up.

Anyone from the area hit please check in. dale hope your able to post.

Beagle

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73878_tn?1214056807
Gosh I know the feeling oh to well waiting to hear from folks in a disater area.  It was 4 days before I heard from my family in Biloxi after Katrina ( not knowing if they were hurt or what was AWFUL!) and that was only because one wonderful person came thru the neighborhood w/a working cell phone and let them call me.  I hope they are alright too.........

How is your ankle today? Well you jinxed me, I woke up w/a swollen left wrist and my left ankle keeps catching and also aches.  Just took 2 Motrin, hope that helps.

Have a good day and hope we hear from Dale & others today!  They are all in my prayers..........

Fisheress
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Avatar_f_tn
what stage and grade was the score on your 2004 biopsy? If you are not past stage two, you can probably safely wait for drugs that might come within 5 yrs. If you are approaching 45, so far the studies show a lower chance at a cure with the current tx. you could search for a trial at the site given already, or look for a hepatologist in one of these
http://www.hepcmatch.com/service/index.php?page=doctors
http://www.hepcprimer.com/patient/doctors.html
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Avatar_m_tn
Sorry to hear about your wrist and ankle.  NYgirl also has a ankle problem.  What is happening to us.  Mine is still swollen even with all the ice.  If it's not better by tomorrow will go see the dr. as it's been 4 days now.

Dale posted in the thread above and he's fine.

Hope you have a great day.

Beagle

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Avatar_n_tn
New here, just had to reply.  Little over 2 months since finishing trx, and I would never have done it knowing what I know now...not saying what someone else should or should not do, but I lost my job, health insurance, and I have so many "new" health problems I can't begin to describe.  Having been completely beat up by the trx, doc said when it was over my life should and would go back to normal, 40 hrs of work, feel better, etc.  just a bunch of medical propoganda.  I love how they can tell me I should be feeling great, and if not, just take a bunch more drugs...I am so pissed off!  So, don't be too disappointed you cannot receive treatment...
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96938_tn?1189803458
Sorry to hear you feel so lousey.  You're right, treatment can be a real butt-kicker.  The effects of the meds can take a while to get out of your system. But, there are folks here, like you, who seem to have lingering effects too.  Were you at least able to clear the virus? Hope so.
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