Hep C treatment and kidney transplant patient

[Hope2689]

I was recently dx with Hep C with a  liver biopsy report showing mild actvity with focal mild periportal fibrosis (grade II, Stage I - II), GGT of 37, Genotype 2B, and a Hep C RNA by PCR of 5.2.  The big dilema is that I've had a kidney transplant about 12 years now and I don't want to jeopardize my kidney for HEP C treatment if I don't need to.  Can anyone lead me in the right direction as to where I can look up similiar cases.  My doctor wants to treat but with lower doses.  PLEASE HELP!!!

[cuteus]

don't let the Rockefeller center cut them!! They are on a killing spree, looking for the oldest, biggest trees around,,grrr.
They should PLANT one and use it every year.
So, do you feel like a squirrel spreading the acorns around?
Maybe you can make a will that will save the trees for the future.

[beamishboy]

Chell: i think "treatment tree" is the absolute perfect name for the tree that keeps on giving(needles) i truly got a thing for trees-i planted 16 oaks,transplanted frm the big woods to a fencerow arrangment..Guy gotta give order to things--'leave" my mark !!! Weekend befor i started trx planted 10 burr oak,20 black walnut,10 horse chestnut--from a local nursery---Planting for the next generation,they should reach maturity inna 100 years....Posterity& i suppose a little vanity,ther is something about a tree..........Soooo reuseing our yuletide xmas stump for treatment Tree isa great& good thing_to my way of thinkin...Tho i haven't cut a tree for xmas since the kids were residing at home.....we useta go cut our own--ax& video camera,,pullin the wee ones on a sled..Always got good&wet&cold&laughed our selves silly!!!!

Tator:spray painting the needles gold!!!!!! priceless&a tad scary--definately a Holloween Tree----i would be spooked--But Goldplating the Last one--i like that idea!!!!!!!!!!!!---Never again!!! i hope for all of us!!!!!---Be Weell---Tommy

[chellski]

you're so funny!  but a great idea
a tx "holiday" tree -  it'll cover any holiday we tx thru!
michelle

[GoofyDad]

<b>'Amazing'</b> - my first choice of words might be more colorful - but nevermind that. Someone - I forget who - has been functioning in the low 7's for months. Argghh. I guess we do what we must, huh?

I really need to get X-mas decorations out today - but we'll see how far I get.

[beamishboy]

what a novel idea--trees the world over will thank you;the arch-druid! yu could even call it a halloween arrangement (dead tree& all,maybe a few orange bulbs)---stick-a-stuffed rabbit under the branches;voila-Easter with trimmings!!   for the 4th of july just add some patriotic bunting,be careful w/ fireworks!! Thoroughly dead trees tend to spontaneously combust and you do wanna have that hardy hemlock around for thanksgiving--couple of squash,some indian corn,bottle wild turkey...Dang girl,i think we're onto something!!!!!! just gotta think outside the box of smashed xmas ornaments....

[GoofyDad]

Nine-point-three?? Why that's a veritable hemoglobin factory, LOL.

Actually, we're all affected differently, aren't we? I'm at 8.3 as of yesterday, from a baseline of 15.5. I definitely huff-n-puff, but I just got back from the home depot with malamine for making a countertop tomorrow. I just move slowly. I felt worst on the way down, at 13 or so. I'm doing 40,00 procrit every 5 days now - hopefully there's relief on the horizon.

[LvdByGod]

i just have a small comment about being 2 of 4 on your test. first of all there "are" different stages of cirhosis. so you should find out if you actually have "cirhosis". they usually use a "meld score" for cirhosis here in the states for cirhosis staging, but i think there could be other tests as well, i'm not sure.

or see if that test was for the grade and stage of the "fibrosis"....something that comes before the cirhosis like john was talking about...

time to get it clear with the hepatologist.

nann, sorry you are having troubles,like the redness in the face and the h.prylori. it's hard to say what going off interferon could be doing to your previous problems...perhaps it was keeping those things at bay? i don't know?...but alot of folks feel lowsy after stopping tx. and then there's also all the fear to factor in..

you could do a search on h.pylori. it does cause stomach aches from what little i read and it can be related to cirhosis too...remember the interferon gets rid of the virus not necessarily the cirhotic liver...although some folks say it can improve after tx...others say no, it will just halt further damage...its one of those debates. perhaps in some cases it seems to go down a stage of cirhosis and in others no.

if you really do have cirhosis as you say then you should remember that going off the treatment doesn't necessarily mean you will not have some liver problems from your cirhotic liver...

this is all an "if", first thing to find out is if you do have cirhosis...

sorry so long...and scattered...just some of my thoughts...

sandi

[MrsOckert]

I don't necessarily think you might be receiving poor care or treatment because your low income.  While I do agree its possible, based on my experience and some other posts I've read so many dr's do things so differently.

I do have ins (not the greatest) and I think I would get the same care from my dr if I was destitute.  LOL  I asked him to do a 4 week PCR and he refused.  He only does them at 12 and 24 weeks.  We haven't even gotten to the discussion about post tx.  I do know of MANY people that have to wait 6 months post TX for another PCR.

[LvdByGod]

as to the redness in the face...it could just be from rosacea...and i did a tiny search but i could not find where that was related to liver disease or hep c. but i did find it can start up from stress...please read below all that can cause a flare up with rosacea.

http://www.rosacea.org/patients/materials/triggersindex.html

so if the stomach aches, and belching, nausea could be caused by the pylori and the redness in the face by rosacea then the things your experiencing could have NOTHING to do with hepatitus c comming back...

SO DON'T LOOSE HOPE...

PRESS THE DR FOR THE MORE SENSITIVE TEST...

AND TRY TO RELAX AND SEE THE DERMATOLOGIST ABOUT THE REDNESS IN YOUR FACE...

LOVE YA HONEY, PRAYING YOU'LL BE KICKIN THIS DRAGON IN THE BUTT!!!
CAN I PRAY THAT?

SANDI

[cuteus]

I always wondered how much HCV was influencing my renal function, I bookmarked this Oxford Journals article
http://ndt.oxfordjournals.org/cgi/content/full/18/8/1573

[DoubleDose]

In regard to the three weeks post-tx when you felt fine, and then began to experience symptoms that caused you to believe that the HCV was back....I think many of us can relate to that experience.  I have read numerous accounts on the forum, of members who were sure the HCV had returned, usually about two to four weeks after ending tx.

My experience was that for three weeks or so after ending a very tough tx of 18 months, I started feeling extremely good.    I felt like I did decades before contracting HCV, and had tremendous energy (even though still anemic), I felt clear headed, enthusiastic, no pains, high libido AND sexual function, motivated, and with zero brain fog, and zero fatigue.  In about three weeks everything changed, and I was hit hard and fast by the freight train....joint pains, depression, brain fog, lots of fatigue, drop in libido and function, stomach distress, eye problems, etc. I continued and still continue to test 'undetected', SVR. All of this has been blamed on post-interferon hangover...but I really wonder.  Why the three incredible weeks????  Why has it taken over two years, after tx, to slowly lose the distressful symptoms (which are still there, but just at a much lower level)???  

In the recent discussion regarding HCV persistence after SVR, I begin to wonder if there is some sort of 'viral rebound' shortly after ending therapy, which relates to the 'persistent infection' sites.  In other words, we all seem to be really SVR by all the PCR tests, but are we really eradicated.  My gut tells me all this long term 'hangover' stuff may relate more to HCV and less to the interferon.  That three week 'window' where I felt like a disease free 'kid' again is strangely a common experience to other SVR's as well. To me it feels more like a viral rebound...just not in the blood or liver.

I really have to wonder what that symptom-free period is all about.  

DoubleDose

[cuteus]

hum! I felt great for the first two wks, then that weird "crash" which lasted a day or two, and back to "normal" after that.  I did get the "flush" look for a while, but that too is gone. The only thing now remaining is the herniated discs and some pre tx joint problems but not too bad. Memory lapses have been quite frequent in the last couple of months. I just got another PCR to make sure, one yr post tx.  How much is just getting old, I wonder?
Keep an eye out for any studies researching and biopsing SVRs hepatic and extra hepatic tissue, just in case. It doesn't hurt to make sure. Since hcv is found in the CNS, maybe it shortcircuited things and it is irreversible? Once they get an extremely good HCV tx going, maybe they will be interested in recruiting the SVR, live ones, and test them thoroughly for HCV.

[couldn't think of a nickname]

To those who suffer from symptoms post-tx, I can't point to any study to back up my opinion, but I believe the meds might be the culprit. It is also possible that the toxins from the meds and virus remain in the body. Maybe a good detox (ACV is one way) and flushing of the lymph system would help.

[FlGuy]

Would you please elaborate on ACV.  Not familiar with the term. Tks

[couldn't think of a nickname]

Sorry, FL, it stands for Apple Cider Vinegar. Some in here, myself included, drink a teaspoon in a full glass of water every day. Some more than once a day. It is good at helping the liver and kidneys eliminate toxins, helps with muscle and joint problems, and it can help precipitate crystals in joints (from arthritis), as well as help disolve gall stones and kidney stones. I have a few books on it, including one with a lot of recipes, and it is widely talked about on the web (using a web search).
The best kind is the unpasteurized, raw ACV with the "mother" (enzymes). It is safe to drink as it kills bacteria and many viruses. It is said if you drink it before a questionable meal, you will not get sick. It also helps the body maintain the proper acid balance. My mom used to tell me that when I was a kid and make me drink it when I was sick, and I hated it, now I drink it every morning with breakfast.

[cuteus]

that is a dissappointment for sure! My PCP just ordered my last PCR, maybe yours can do that for you?  
There is a study that shows the 3 month results to be almost 100% with the 6 mo test, and even with the 4 wk post tx results. Maybe you can print it and show it to your dr.
  My practice does a 4 wk, 3mo, 6mo and 12 mo post PCR.  I too felt weird symptoms about 3 wks post tx and was sure it was back, but it wasn't. You should not have to wait that long to find out, especially if you plan to keep fighting the hcv.

http://hcvadvocate.org/news/reports/AASLD_2004/Posters_AASLD_2004.htm#A62

[vegas777]

you just reminded me I need to go get some more ACV...

thanks *dip*

[johnisme]

Hi there, when you say you have cirrhosis at 2/4 I take that you are stage 2 out of 4. If that is right being stage 2/4 is NOT cirrhosis. Far from it your only half way there. I am stage 4/4, that is cirrhosis. Yes a more sensitive test would be nice but even then i would want to wait till 3 months post tx. See if you can press for one at 3 months. And then if they still do the 615 test and not one more sensitive you should have a better handle on where you stand. Sometimes are minds can play tricks on us and with are the worry and stress we might read more into something. Now im not saying you are im just going my my own personel experience's. Lets just say for now you are svr as you show un-d. But let me just say this, even though im stage 4/4 im still kicking and being kicked..LOL Still fill pretty good. Im geno 1 and getting ready to start tx. If i get svr or not i still plan on being around for along time. For the most part hcv is a slow moving virus. So try not to worry so much. Put a smile on that face and have a happy holiday. Or as i would rather say a very merry xmas to you. Now wheres that smile?. :) Best of luck to ya.

Stay well............John

[couldn't think of a nickname]

Guess I should open an online store since I am advertising for SOMEONE! LOL

[FlGuy]

Thanks. I've read the recent posts on the subject - buzzed out on the term.  I guess when I see the letter C and V together my mind does not harken to to anything beneficial.

[vegas777]

LOL  ya, you'll be beat down for that one for sure  

[vegas777]

count down - last night

yippe eye oh k'eye eh!

[couldn't think of a nickname]

I believe you hit on what really helped you-deep sleep. I am willing to bet many of us with myalgia, or worse symptoms don't get any/enough delta sleep, thus the body can't repair itself, and finds it frequently fatigued, and more susceptible to aches and pains that most people wouldn't.
I am glad to hear you overcame the post tx sx.

[nanniegea]

Hello everyone,
   Thanks for all the input. Just to clarify I do have cirrhosis but was told that my liver was still functioning at the 2 level? I just cannot keep all the different stages right in my head. When the Doc first said the word cirrhosis I stopped him and said do you mean I'm close to having it or do I have it and he said oh, you most definately have cirrhosis. My world just about stopped spinning. I do know that even with that I can still do pretty well as long as I eat right and take care of myself. The reason I am so nervous is because of all the symptoms I was having prior to tx. I do feel changes, some for the better and some for the worse but all or most might be the poisons working their way out of my body. I have a host of other issues so I cannot put it all down to tx or hepc. I will take your advice though and see if I can get the more sensitive test in 3 mo's instead of waiting another 6. I also like what I'm hearing about the ACV, I will give that a try too. Thanks again, you all have made me feel a bit better about things. I'll let you know what happens and in the meantime I wish you all Happy Holidays and(((hugs to all))).