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Avatar universal

Type 1a, prepping for tx alone

Hi all. I've been reading your posts for some time now. It's been very helpful. I'm new to the whole communicating with strangers thing. I feel like I sort of know some of you.

I live with my black lab, Gretchenn. My 2 kids are grown & on their own. I have sort of isolated myself these past 3 years. I had a bunch of bloodwork done. Was dx & Kaiser sent me to a hepC class. Stopped all alcohol then. My VL is 3.8M. In May I weighed in at 181 (at 5'2") & my cholesterol was 296. A few years ago I was 120 & chol. 165-180. I've decided that I should put myself in better shape before starting tx to hopefully improve my odds of beating this. So far I've lost 15 lbs. I tell myself if I can't endure dieting, how will I handle tx? On the one hand I'm afraid of tx: the dismal odds, the endurance, potential permanent sx. On the other hand I'm afraid waiting might make the liver worse. I'm afraid to do the biopsy because I'm a bleeder.  Will my liver get better or worse while I "prep"? Am I doing the right thing?
15 Responses
Avatar universal
Hi Lynda...sorry to have to meet under the circumstances but at least we all have a place to come and gain knowledge and support. I was just diagnosed about a month ago. I am a 51 year old female type 1a...I will have my biopsy this week and then the gi says that we will begin treatment.I am terrified but this forum has been a godsend for me....these people here are terrific!!! There are alot of us just beginning and as you read posts you will laugh...cry and begin to realize that we are not alone. I am so thankful to be able to come here and get peace of mind and friendship. God Bless.
Avatar universal
Need more information but generally getting down to your correct weight will increase your chance of clearing the virus. Sounds like 120 would be a good goal.

Also, do you know your genotype, liver enzymes, and abou how long you have had the virus? Have you had a biopsy?  A biopsy will tell you how much liver damage you have or don't have. Without all this information, you really can't make an informed treatment decision.
Avatar universal
I'm a 51 year old female type 1a, ALT=89, AST=63, dx 2002 (but nobody said anything until 2003). Don't know how long I've had it. I haven't had the biopsy yet. I know I don't clot very well & am hoping to get a little healthier before the biopsy because the main sx of biopsy is hemorrhaging.

I had hepB at age 12 (1967 "serum" hep) and finally got the antibodies at age 38. I was told no hard liquor at age 21 after vomitting volumes of red blood. I was told a few beers was ok, just don't get drunk. At age 33 my ALT was 300 & I was told no alcohol. After 5 years of no alcohol, my ALT was down to 10. They said I'd cleared the virus & I started drinking a little, thinking I was cured. Started prozac & quit drinking 6 weeks ago.

I tell you all of this because it's part of the liver picture. I have always had high hemoglobin (>15) & high-end wbc. My iron storage is normal. I'm targetting 10 lbs/mo wt loss until I'm down to 135 & thinking of starting treatment then. It sounds like I'll lose some on tx. I need to figure out the right ammount of protein to take (overload stresses the liver, but need enough to make new cells). I've decided not to worry about iron overload, just no suppliments, but spinach, soy, etc ok.

I had a laproscopy for endometriosis (major hemorrhaging) at 40 & started HRT until a friend had liver failure from estrogen. So I have the whole hot flash thing, etc. Last year I was dx w/ HPV & had a series of biopsies (hemorrhaged after each one for weeks, of coarse) and was declaired cleared (for now) a few weeks ago. I had cancer cells in my cervex, but the "biopsy" took out most of my cervex. My mammogram showed 2 lumps and they have been dx benign fibrous cysts.

GEESE! I had though I was pretty healthy & was just getting STD tested after a very bad marriage along with the standard 50 year/100,000 mile check-up & whoopie - now were rocking!

I appreciate your comments & if anyone has info about protein (45-65 gm/day?), iron overload or estrogen as they relate to liver function it would help me. Also, what exactly does milk thistle do?  Should I take it or anything else?
Avatar universal
Lynda,maybe the fibrosure non-invasive test would work for you if they can't do biopsy.For now the weight loss would be good and milk thistle could'nt hurt. I hope some of the others give you advice too but it can be a little slow on the weekend.Diet and exercise are good simply to be in the best shape you can before starting tx.Hang in there-it sounds like you've weathered a few storms already-you're due some luck now I'd say. frank
Avatar universal
Amazing! Thank you so much. I did a search on fibrosure to see what it is. It's an algorithm and they let you run it on their site for free if you register. You have to have the lab info to input.
This is the site:

http://www.biopredictive.com/services/tests/fibrotestactitest/en

FibroTestFibroTest is a surrogate marker of liver fibrosis. FibroTest combines alpha2-macroglobulin, haptoglobin, apolipoprotein A1, total bilirubin and gamma glutamyl transpeptidase.

ActiTestActiTest is a surrogate marker of liver activity (necrosis and inflammation). ActiTest combines the same 5 markers used in FibroTest plus ALT (Alanine Amino Transferase).
Avatar universal
But we can certainly get smogged.
Avatar universal
A lot to deal with, but your approach seems very thorough and methodical, a one step at a time approach that will serve you very well over the long run.   It's so easy to get overwhelmed with all of this, so I just want to commend you for your good attitude and clear head.  Just keep doing what you're doing.

You might want to check out the <a href=http://www.hepcchallenge.org></a> site  and download their "Hep C Choices" material.   The section on nutrition and diet is excellent.    As for determining protein intake, UNLESS you have cirrhosis (confirmed by biopsy), there is no need to limit quantity.  My understanding is that with chronic viral infection, we actually want to keep our intake as high as possible.   A good combined liver health/weight loss approach would include the use of whey protein.  Personally I like the Jarrow brand, as it tastes quite decent--so many of these things don't--and it has high percentages of all the right things.  Whey increases glutathione production, and a relatively small amount of the powder will contribute an easy 20 gms of protein with each serving.  

Best of luck to you, Lynda.  You've come to a good place.
Avatar universal
there are two blood tests out there to measure liver damage, Fibrosure is the one to the closest results to a biopsy.

Sorry to hear that the wear and tear in your "vehicle" is so extensive, too bad we can't replace any parts or change any fluids.
take care
Avatar universal
yes - we certainly can and some of us do get smogged!! yes - indeed...  
Lynda - you have been through so much... wow.. good luck to you -you seem to have a calm attitude and educated plan.  Seems we almost have to be our own doctors these days!!!  I also live alone with my 2 cats..  I think sometimes it is a blessing being alone, going through the day-to-day grind of tx..  I can rest and go to bed as early as I want, and be absolutely grouchy with no one noticing!!  My animals are my sleeping aids, companions, and healers all unto themselves.  I wish you all the best...
Avatar universal
You guys are sure swell!

About the whey protein thing - I've been using MetRx protein bars as sort of an indulging-type "diet aid". mmmmmmmmmm chocolate roasted peanut with caramel. 320 calories, 32 grams of protein. I also like to eat edame (soy beans) & hummus & boca burgers & basically I try to keep it down to 65g/day, but often go over 90g. Protein is required for the liver to regenerate, but since all protein gets processed in the liver, excess amount can put stress on the liver.
My question: Is it important for me to replace some of my protein intake with whey protein?  I'll do a search on glutathione production. Maybe the answer is there.

Also, high hemoglobin is an indicator for poor tx results (along with my wt & age & 38 yr liver history) I don't know if I can really get it down. Only time it was below 15 was when I was hemorrhaging or giving birth. Not even pregnancy or periods lowered it. I always thought it was a good thing, like healthy! Now I wish it was lower. It is 15.4 now. All I do about this is avoid suppliments, not iron containing foods.

I wish I had real live people like you guys in my life. Thanks for being in my cyber-world. My kids are great, but they have their own lives & struggles. I sort of got rid of most everybody else. I'm starting to come around.
Avatar universal
WE ARE REAL!


you will be fine
Avatar universal
Just watch out for our acid reflux contingent  all belching and farting and stumbling over their remotes.   Very bad influence.  You know, sometimes with digestive diseases, virtual relationships can be a improvement over the other kind.    (Another example of reality being highly over-rated, yadda yadda....)

Well damn, woman, sounds like a typical Bay Area diet to me.   That edame reference is a definite giveaway.   I'm not suggesting you replace anything you're already consuming with the whey protein--if anything, I would try to get your protein up even higher.   I mean, don't assume that your liver can't handle the "stress" of  assimilating protein.   Do you have good reason to suspect cirrhosis?  You haven't yet mentioned what your liver function tests look like.   For example, my liver is no exactly picture perfect--I'd probably send it back to the kitchen if it appeared on a plate in front of me--but my liver function has always been A+, in spite of constant inflammatory pain, and so on.   Weak, but doing its job more than adequately.   The bottom line is avoiding stress, even stressing out about the proper liver-friendly diet.   And ironically enough, if your cholesterol is high you know that your liver is doing its job.   I'd say that basically you're on the right track.
Avatar universal
yeah, my dog Gretchenn never complains when I toss & turn all night or all that other stuff you mentioned. the edame is Safeway brand frozen. I boil it in salt & it's a great snack.

What site were you referring to, this one? I don't know the condition of my liver. I want to see if I can get the fibrosure instead.

I think in many ways living alone is good.  Certainly beats my last relationship. It makes it easier to take care of myself.  I've been doing it all for so long, now I'm taking it easier. I just don't know what to expect as far as the treatment & will I need help. I figure I'll be ok. Thanks.
Avatar universal
Weird, the link I so carefully HTML'd in  appeared as a blank space in my 1st post.   Let's try that again w/o the link:

http://www.hepcchallenge.org/choices/coverpagep.htm

Does your dog pal know yet about the mastodon bone discovery in San Jose?  :)

Avatar universal
She stands around with her nose in the air, pointing. She tries to tell me that ALL the other dogs have a mastedon bone, so how come she can't have one. I told her 'cuz we're poor'.
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