HEPATITIS C COMMUNITY
decision time

decision time

I have been watching the forum for awhile, and get a lot of info from it, and have posted a couple of time's, and now is probably decision time, have had the c for about 30 years, dx 2 years ago, my vl
was 13,000,000 a year ago, now 5,000,000 but from what I have read probably not relevent, grade 2 stage 2, I quit drinking a year ago after finding out I had diabettis also, lost 40 lbs, my feet and toes have been bothering me for awhile, and found out it was neuropathy, my number's have gotten better since stopped drinking and started the healthy life, but all these other thing's keep sneaking up, maybe
I should go back to drinking,lol, anyway my questions if you folk's would be so kind as to give your opinions, can I tx with diabettis and this neuropathy stuff, and does anyone know the a good hep doc in oregon, and I have read that this treatment is pretty tough, what can I expect, nausea, fogetfulness, fatique, trying to figure what I can expect for work, I am in construction, but not much manual labor, but have to deal with the public, and do some thinking..and the life long sx,
I am pretty easy going and have a pretty good sense of humor and like to laugh and enjoy life, if this txing is going to make me real sick and grumpy even if I clear, then I might just want to wait, but if I have a chance of clearing and coming back to somewhat of my same old self, would like to see the grandkid's grow up and give their parent's the h*** they put me thru..lol with my vl load and grade, am I misinformed that the odds are only about 10 percent of going on to getting severe liver disease?
and what other unexpected health surprises am I in for? another problem I am from a fairly small town, and from all the screw-ups the labs and docs have with just my blood work and tests, am not sure they could handle getting my meds to me on time, from what I have read they have to be a certain tempature, and taken on time, and this thing has to be done right, not sure the medical community here can handle that, anyway would appreciate all the info I can get on this, and cost, I have insurance but what is the rough monthly cost's for the meds? again all good advice appreciated..
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233616_tn?1312790796
where in Oregon are you?
you can write to me privately about this if you want. I'm also in Oregon.
So glad you quit the drink, that's half the battle right there. It is harder to treat with your diabetic condition, the tx can mess with blood sugar and push you into more dangerous levels.
the 2 needs you'll have to address is A. can you make any dietary changes to help regulate blood sugar that you haven't already. Like no sugar, no simple carbohydrate, only complex ones.
2. can you get a doc to prescribe for you Byetta, which will help slow starch absorption even further.
If you can adjust your weight down, it will greatly benefit both the tx, and your overall health.
Byetta is only approvable for those diebetics with liver disease to help with weight loss.
However you can only get it if your sugars are not controlable by diet.

Also, the meds are shipped in ice-packed packages so unless you are extremely rural they should reach you OK. You may need to check with which carrier could deliver quickest to you, but most specialty pharmacies (which is where we all must get this as per our insurances) ship these drugs overnight express. Meaning their timely delivery is mandatory.

It's great that you enjoy life, and you will after tx too. the tx can make things more difficult, as I'm sure you've read, but these are temporary set backs we all face in an effort to rid ourselves of a naughty little virus.  Makes you wish Santa could just put some coal in all those viral stockings!!
Cost depends on your insurance, mine costs 20 a month...not bad for 3,000 in drugs.

I'm not sure where you heard those odds that sounds very questionable. I've never heard them before do you recall your source or what study you read that said this??? Or,maybe someone else can help you there.

hope this helps, and like I said, I'm in Oregon, so write to me by clicking on my name in here, and I'll see if I can help you any further.
Have a Blessed Christmas
maryB
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206807_tn?1331939784
I am a Construction Superintendent and like you, I don’t do much physical labor anymore (I’ve paid my dues). I am into my 3rd week of tx now and the 2 main things that I have to watch out for are the Brain Fog and the Riba Rage.
The Brain Fog-I can be discussing a problem with an Architect, Engineer, or Sub- Contractor and forget what we are talking about in mid sentence. We could be looking at the detail on the plans and it doesn’t matter, my mind goes blank. I have found that if I change the subject and tell some unrelated, futile story, it comes back to me.
Riba Rage- This is a tough one. The only advice I can give on this is “try to keep your mouth shut.” When I feel my blood starting to boil (9 times out of 10, it is over nothing), I try to excuse myself from the issue and address it after I calm down. I must be honest; I only have about an 80% success rate at controlling it. Some people take Anti Depressants but I prefer Xanax. So far, I haven’t physically attacked anyone yet. I am saving that for the next @sshole that blows their horn at me.

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Avatar_n_tn
well first off it sounds like you have been poisoning yourself for most of the last 30 years which means you probably have some price to pay for that so i suggest get a liver biopsey or an ultrasound and see what damage has been done......that will help you decide.  I could not find anyone in oregon to deal with my hep c but i did not push the issue either......i am now in florida, had hep c for 20 years, finally i am doing treatment.  I am doing ok but i have a great support group, especially at work.  My employer is now more of a benefactor really and i am very lucky.  good luck to you.....and i think ill keep my palm trees for now while you guys can keep your mudslides:)----signed Startek2....former oregon duck
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173975_tn?1216261375
What is your genotype and do you have any idea of how long you'd be scheduled to treat?

For example, if you are anything except genotype 1, and treatment naive, you might get away with the shorter 24 week TX.

Not that THAT'S any piece-of-cake;  From reading the 24 week stories on Forum it sometimes seems like many have magnified SX, at least in the first couple of months, but really it is an individual thing, DT.  (I'm 1A on week 55 of 72)

The best you are looking at is your SX will be mild, the TX short, the meds successful and you will put all this behind you and go on with your life.

But I'm not going to lie to you;  A lot of folk on Forum have had SX on the other end of the spectrum, or maybe it's that those who don't have as many side effects don't post as often?  I really don't know.

The meds should come to you via UPS or Fed-Ex and be dropped in your mailbox in an ice-bag.  

You are right that the meds HAVE to be taken as scheduled for the best chance of UND and SVR.

Best of luck with your decision,

wyntre
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Avatar_n_tn
thanks for the info, I am geno type 1a, the 40 lbs I lost pretty well got me back to what I should weigh for my height,(6' 2"-200lbs), I am no brain surgeon, but stopping drinking, and eating somewhat
healthy seem's to have had a lot of  affect, bought my gluclose levels back to almost normal, dropped vl in half, got my alt and ast down close to normal, triglyceride's down from 1200 to 300, and brought my fun level down to O,lol but still do not have a good  hep doc, when I went to my local hep doc to discuss my biopsy result's,(after almost tripping over her two dog's and almost sitting on her cat) we were just beginning to dicuss the results while she was examining me, and she was looking in my throat, (at which place I am not sure my liver is located) she found a lesion, and refered me to a ENT, well had it removed and benign,but haven't heard back from her and would like to get a good opinion from a experinced hep doc in the pacific northwest (preferably Oregon) to work with my pc doc, but still somewhat concerned about txing, after knowing several people with different
kind's of cancer(not hep c related) doing treatment or surgery only to have it get worse earlier, I have read a little about the treatment affecting bone marrow and immune system,can txing open up a new can of worm's, and if so how often does it happen?  my biopsy, I am stage 2 grade 2, portal expansion by fibrosis with periportal fibrosis present, with some ductopenia with portal tracts, (and this is underlined no distinct bile duct visualized) sections of cores of hepatic parenchyma, portal tracts expanded by fibrosis and chronic inflamation (inflammation), comprised of lymphocites, piecemeal necrosis,
extension of lymphocytes beyond limiting plate to surround periportal hepatocites, degenerating periportal hepatocytes are noted,lymphoid aggregates are present. -hcv qua h 5,520,000-6.74, well that is about it, and if you would help me with the english version of this it would be greatly appreciated, by the way, I do know that compared with what some of you have been thru this is fairly mild, and your advice and help to novice's like me is a good thing, it is 12-01 Christmas morning, have a merry christmas,,thanks..
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Avatar_m_tn
Yes, sounds like you will need someone to work with your local doctor unless her dogs and cat are more  knowledgaeble than most.  Hopefully, MerryBe will help -- and I assume she will give you the name of her consult and not her treatment doctor.

Also, don't  be afraid of an overnight plane trip, because  it may only be a one-time consult with the local doctor doing all the leg work once tx begins and corresponding with the consulting doc via phone and email. Important thing besides picking the right doctor is to make sure both doc will work together as you want. Best way to do this is simply to ask them in advance, and preferably before you hop on that plane.

As to the decision itself, as a geno 1, stage 2, you have choices, especially with newer drugs in the trial pipeline that are already delivering a better SVR rate in half the time.

No one can absolutely answer the questions you pose as to what you can expect from treatment in terms of side effects. Some here have a relatively easy time, some a very difficult time, most inbetween. Some feel better after treatment, some feel worse, and many about the same.

At least to get a consensus here, best to take a couple of days (not an hour) and back read posts both in this and the "Community Forum" . That should give you a very good idea how people are handling both treatment and post treatment.

All the best,

--Jim
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Avatar_m_tn
Also a diabetic here and did extended tx. sides wasn't to bad for me, at least not as bad as ive seen here. That one thing about HCV, one never knows about being able to work or how bad the sxs will be.

But there is one thing HCV can't take from you if you don't let it and thats your sense of humor.

You said.........would like to see the grandkid's grow up and give their parent's the h*** they put me thru.

Great thinking there, thats what i've been doing and loving every minute of it. Just keep on keeping on and enjoy life and things will work out.

Wishing you the very best.

can man heading to the can

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233616_tn?1312790796
Merry Chrismas

I have a doc appt tomorrow and will ask who is good near you, if you tell me where you are.

Kick B on grnadkids...my sentiments exactly...in between spoiling sessions

your liver profile doesn't sound like any stage 2 I've read of. It concerns me that your ducts are compromised, as this means bile can sit/stay in the liver longer than it should, and that could effect how quickly you progress through more stages. So I'd be prone to get more explaination of your biopsy....biopsy is the good standard but can be off by a stage, depends on who is reading it.

glad to hear you are making all the changes. Great drop on the TriG's...My triglycerides are down to 111....the lower you can get to and hold all those numbers, and liver enymes the better your chances either in treatment or waiting for better ones.
mary

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