Two things. Red palms is more distinguised by the redness at the heel of your palm. And, in case this hasn't been mentioned before, deciding to begin tx now without the benefit of a biopsy could be a very big mistake. Reconsider, see a hepatologist and get a biopsy before you begin.
Hi. Meds ordered - pharmacy cld - waiting for delivery date - both Peg & Riba coming together, tried for earlier appt w/Dr. no good - how are you? - read one of your posts about taking out your tx clothes. I went through attic and found my "divorce clothes" They are ready just in case I become the shrinking women. Mentally feel a little better and calmer.
SAid: They are ready just in case I become the shrinking women
LOL it's the people who WANT to lose weight that don't and the people who DONT want to lose who do!
Does anything ever go the way you WANT TO in life? Just weigh yourself once in a while and if you notice you are losing weight.....why go out and buy the BEST belgian chocolates and ice cream you can find - and have a good time! ;)
I'm on week 53 I think (of 72) and although I was very very thin to start I lost 20 pounds in the first few months. I think a LOT had to do with my thyroid though. Now.......I'm back to normal weight again.
So don't start starving or pigging out until you SEE what is what cause you can never be sure what's gonna happen!
I was hoping that it would change me drastically enough to be a supermodel but...I found out treatment doesn't turn back the hands of time! hahahahahahahahahaha
Hi Debby, I have been eating everything in site. ice-cream almost every day trying to put on those few last lbs. How are you? I am better this week. I stopped taking all the herbs and suppements except for Vitamin C. I stopped the Milk Thistle too. Don't want any of it still in my system b4 tx.
Geno 2 and 3 are often advised to start treating without a biopsy this is common practice due to the high odds of eradicating the virus for geno 2 and 3. You cant get a biopsy done unless the doc sees a reason to take that risk.
Going into this adventure with a clear head is an advantage and I'm glad that you've calmed a bit. I just called the 'speciality' pharmacy (insurance require I get meds from them), they have the rx from the doc and it's going through certification and approval stuff. Still 3 weeks to start so no crisis to deal with. Need to run by Quest for a pcr and TSH sometime this week and those are the last things. Make sure you enjoy the next three weeks, do some Christmas shopping.
This is a problem when we don't have biopsies. We don't know if we have cirrhosis. My doc didn't order a biopsy before tx because he said there are risks and if I was going to tx anyway, why do one? Well, I listened to him and now I wish I had insisted on one. Can you get a biopsy before you start tx? I would if I could.
Glad to hear you are joining us on the tx train! I know you have been trying lots of other things.
I've kinda missed Jim too but I'm glad he's going on with his post SVR life.....I hope he's having some fun, relaxation and a bit of positive productivity, he deserves it! If he's not on here too much, might mean that his post tx issues have started to ease up, which would be great!
Niceguy..its good you are starting tx soon. Try to relax, I think maybe you are worrying too much. You are young and that is on your side for a good recovery from tx. Wish you the best!
Hi Kalio, nice to see you... missed not seeing you around...and Jim too...he's missing in action. Hope you're feeling better.
I was told by one of the doctors just what you said also, as far as 2 and 3 not having to biopsy. I haven't biopsied, starting tx soon, I hope,but I still go back and forth as to whether or not to biospy.
If I wasn't going to tx at present time, I would bx, but since I plan on tx, I figure what would be the sense. If I dont svr,God forbid, then doc would and I would want her too, but as it stands now, I don't think I am going to. Then again I change with the wind.
The one hep doc told me it is a high risk procedure. Most of the time all goes well with people, but it still is risky.I'll discuss it more with my doctor next visit to make sure that I am comfortable with my decision.
Have you ever had a biopsy? I thought the same as you did before tx...that I didn't need one. NOW I want one. I want to know the stage my liver is in and how much more I should worry! LOL No, seriously, it is a good tool to have when issues come up during tx that might effect your decision whether or not to continue tx'ing. If your stage is low and you are REALLY sick with something and there was a decision to be made about whether to continue, it would be easier if you had a biopsy to refer to. So far this hasn't been an issue for me, although at one point the doc wanted me to reduce meds. Anyway, just my 2 cents, from one who doesn't have a biopsy either!
No, never had a bx. I know what your saying and I go back and forth as to whether get one, but as I told the doctor, I don't want to be the 0.03 person who drops dead from something going wrong and then they say...."oh look, her liver was like that of a baby, perfect."lol
I don't know maybe...somebody on forum once posted that the doc hit the gallbladder and they were in extreme pain and had to get gallbladder taken out then and there. Rare, maybe, but rareity doesn't matter to the one screaming on screaming in pain.
So, i don't know. I am a 2, the doctor said 2 does have a good chance of svr...but who knows..because this cryoglobulins thing I may have does not look like fun.
Found Boston girl in archives and I believe she said she is having to stay on low dose interferon. Nightmare to me.
When my doc mentioned "the risk" I didn't bat an eyelid about not having a biopsy. I had one 5 years ago and the horrible part was laying on my side for 4 hrs. Really painful, but nothing after that. Now I think, geez, I could get hit by a car walking across my deserted street with those kinds of odds, wish I would have had one. I WANT TO KNOW and now I can't get one. I am hoping to get a catscan that will tell if I have cirrhosis, although my stage was only stage 1 a few years ago, I don't feel as well now.
hi, i may be wrong about the 38% but that is what i thought. it may have been the other way around, that it is wrong 38% of the time. i think the jist of the one article i read was that because of small sample size in a biopsy you can not get a complete dx of the "whole" liver. if you are gonna have it done ask the doc to sample 2 or 3 areas to be sure. i will try and find the link about this. dont get me wrong i think a biopsy is a valuable tool but only in certain patients including geno 1's that have other signs of liver damage. there are so many markers and sx that a "good experienced" liver doc can decide if a bx is necessary based on them. i hope you agree that docs are slowly getting away from biopsies?
Myown; The cat scan should give you approx. stage. Kalio had one and it was great she says! Her dr. didn't give her a biopsy either.
I just have this feeling something is wrong. I can be a real worry wart and just wish I knew. Don't know about biopsy afterwards, hope so, or a cat scan. I just hope I have ins. after this!
Kalio! Hey girl! I haven't talked to you in a while. I thought you were getting better with the antibiotics, no? What's going on? Hope you are okay now. Is the strep gone?
Thanks, your info makes me feel better since I haven't bx. I've been reading the same.
I watched the slide presentation by Dr. Shiff(?) and he also said that if your "not" planing on tx, you SHOULD bx....but if you are going to tx, don't necessarily need one. I don't remember his exact wording, but that is the jist of what he said.
Yes, that makes not getting a bx a little easier. I think that Cat Scan can give good info. on your liver.
I know I shouldn't worry, but that is sure easier said than done. When I hear about dx like cirrhosis, I wonder if I have it too. My dr. said he won't do a cat scan because I am curious. Dang!! LOL But my Ultra Sound says I have swollen pancreas ducts? Perhaps he will do one now. I hope so. I don't feel much pain, but it would be nice to know. I am a curious george!
after much research biopsies are being performed much less now then ever, even on geno 1's. the exception is if the labs & other markers indicate there may be damage then it will be done. it is being said that the "gold standard" biopsy is not all that accurate after all. i think some of the articles i have read said they may be only 38% accurate for the "whole" liver, just that part where the sample was taken from. also considering size of sample & how good the pathologist reading the slides. i think the new non invasive tests will be the gold standard in the near future and biopsies will be the thing of the past. like many top doctors are saying now, if you are gonna treat anyway why do the biopsy. a good hep doctor that has seen 100's maybe 1000's of liver patients can tell by your labs and other noninvasive tests what your liver status is. if they do not suspect any damage or minimal damage why put you through a biopsy. this is just another one of those procedures that docs order automatically when most of the time it is not necessary.
Thanks for info. I also had a ultra sound at urologist and the tech said my liver looked good, but who knows? But at least he didn't say it looked bad.
Sometimes those feelings and negative thoughts we have are just in our minds, we imagine the worst. Hopefully, you are worrying for no reason. I have a feeling your fine.
When I was going to a holistic doc, she did a parasite test, standard test with holistic doctors.
Well, forget it,... I then started checking my stool before results came back and I swore I had parasites,and baby orphan worms (didn't see big worms which would have been the parents, so I figured I only had the baby microscopic ones,ya know, the ones that only me and possibly Superman could see with our naked eyes.)lol
I shouldn't put a "lol" after the above paragraph, because I was telling the doctor up and down that I had parasties. Of course, the test came back negative and I gave the doctor a Rosanne-Rosanneadana, "nevermind." lol
So sometimes we worry so much and then find out it was for nothing. I think the diagnoses we all received with having hep c changes our view on the "what if's" in life.
We found a "what if" that came true. But alot of the "what ifs" never come true, its just our fears.
Some days we are strong, other days everything gets to us and we think the worst. We all do it.
I thank God we have this forum to come to and let it all out when we feel that way. Who else would better understand.No one.
Kalio..glad to hear you starting to feel better.
Swollen ducts.. Could that be a stones? The only way you'll feel better is to get the cat scan, insist. I don't uderstand these doctors, they aren't paying for the tests, why is it like pulling teeth sometimes to get tests ordered?
No, the wait is worse (believe it or not) than the tx.
Well that's good news. I am afraid, but not lkie I was originally. I feel lazy about the whole thing too.
The lab that I have to go to is always so so crowded, no matter what time you go. It seems like so much work, running back and forth to labs, then doctors, yet I never hear anyone complaining about it. I'm complaining before I even start.
Yeah, the doctor didn't want ot start in summer cuz of sun.
I don't work anymore, so I am trying to think of what is the best days to do shots. I was thinking about Thursday nite. For some reason it seems to be a popular night chosen by the brethren here lol.
I guess you can call me a copy cat. But actually, if something goes wrong with shot, God forbid, at least the next day the doctor is open. Then if I go Mon or Tues for labs and I guess the following day to doctor. I don't know. I guess I will figure it all out.
The doc had said she does weekly pcr, so I guess that's one thing I won't have to wait for.
If you have any suggestions about when to do shots and stuff, let me know when you get a chance. Thanks
He said he can't ask the ins. co to pay for a test because I am curious. I can understand that. If I were the ins. co, I don't know if I would approve it for curiousity! Now that maybe something is real, I can get it (I hope). It hurts sometimes, not much, but I am willing to play it up to get that CAT SCAN. Geez, what am I doing? We used to fake being sick to stay home from school. Now I fake a lot of pain to get a cat scan? Our lives sure seem to change priority on tx (and before).
No, the wait is worse (believe it or not) than the tx. Once you make up your mind you are gonna do it, I just wanted to start NOW! I can't believe how long you have waited. One month was too long for me! Even if you get bad sx from the first shot, you will feel relieved that you are on the road. I know the going on the vacation anology isn't going to fly here...LOL But the wait is similar!
I don't work (much) now except at home reading briefs and editing, so I am pretty flexible and it is not often. Thank goodness, I have a housekeeper, cuz' my house would probably be condemned by now! lOL
I take my shot on Wed. noon, so my sx don't hit me on the weekends. It is working out pretty well. I may get some sx on Thurs or Fri. This week I went to a mock trial on Thurs. (shot day!) and made it through. Sx hit me before 8;30 am and then I was okay. I wanted my weekends sx free (if possible) cuz' I love to see my grandkids on the weekend.
The best thing is to figure out what days you don't mind being laid up, if it comes to that, and go from there. A forty-eight hour window may work. Of course, you won't know when they hit you until you start tx. Amazing how different it hits us all.
the problem with not biopsing is in the case where tx is not working and you need to know how aggressive you should be. I don't know where the 38% comes from, but the articles I read state that nothing is as accurate as the biopsy when determining the damage before cirrhosis sets in. The only thing that is coming close to it is the fibroscan. The actual tissue also can be tested for other things, can't remember what at the moment, that add to a more complete picture of the state of health of the liver. An ultrasound guided biopsy, has very few complications.
a web search of the term 'benefits of a biopsy" should offer all the reasons, other than staging, that will be assessed by the pathologist. there is no substitute for looking at the actual tissue. all the other tests can do is offer a good guess.
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