Survivor

[samfla]

This isn't a question, just an intro & 1st timer to this forum.  

I'm a female of 56 with genotype 1a.  Diagnosed in 2001 for Hep C which had to have been working on me for @35 years.  Yes, risky lifesyle (late '60 & "70's!).  So little was known @ hep c and that's still seems to be the case.  We're all guinnea pigs if you're going to western doc's.  That's why the call it "practicing".  

I tried the int/rbv mix and was removed from the treatment after 3 months because of white cells dropping so low the doctor called me himself and the labs were read.  Thank God he did take me off because there was no functioning for me.  2002 the tx completely put me on my butt.  I couldn't function.  They told me later they had overdosed me.  I was 120 lbs then and they gave the same dose as a 175 lb man.  From what I've read and experience, men do much better with the treatment that women.  And if you have a genotype of 1A it's really a slight chance the tx will do anything to help the hep c.  The success stories are all great to hear, but never is that virus gone from your blood, never!  I don't care what anyone says.  Bleach will cure hep c and HIV, but it'll kill you too.

I was diagnosed with a liver tumor in 2004, had a chemo embolization to zap it to below 5ml so I could get on the transplant list.  The chemo worked!  Great news!  And after many laborious tests and social interviews, I was on the list.  I'm lucky in that I am near a transplant center in FL - Lifelink.  In less that 2 weeks I got the call to get to the hospital for the transplant.  Surgery went great, no issues.  Post transplant I was immediately flush with pink vs. grey skin and just starving in ICU recovery.  I was out of the hospital in 6 days...usually they keep you two weeks.  Lucky for me a hurricane was coming right at the hospital so they removed all but the critically ill.  Which, because of steriods given I was practically doing jumping jacks!  I had so much energy I didn't sleep for days.  I was ready to go!

Lot's of labs and biopsies post transplant, every week then every month then 6 mo's then yearly.  It's been 6 1/2 years now & the last biop showed 3rd stage fibrosis.  Hey, better than cirrhosis.  

Today I'm on hemodialys for kidney disease.  It cropped up from a combo of Hep C & antirejection drugs &/or high blood pressure.  Take your pick or roll the dice, the doctor's couldn't say.  So there are a few things I learned along this journey, (that I'm happy to be on (still here!).  Hep C doesn't just mess with your liver, it does some damage in other places too.  And no one ruled out the cause of the cancer could have started with the initial tx plan.  

Glad to see this exists and just wanted to put this out there!  

There is always someone off much worse and a positive outlook is the only way to get through this!  Everyday is gravy!

Thanks!!!!!

[his3707]

you have nothing to apologize for.  Your a courageous person for trying treatment and getting a liver transplant is no small feat!  You certainly are a survivor.  Look around on the forum and go into the archives and start reading up on all the latest news.  Dont ever give up, you never know what the future may hold for you!    

[samfla]

I guess I was out of the loop for the last six years on the tx for hcv, I'm glad they are making such great progress.  And sorry if I sounded too negative on the tx, there is a much smaller rate of success, sustained or temporary for type 1 a genotype, which is what I have.  My doctor confirmed this to me on my last visit, but it's the only thing they have right now.  My choice is quality vs quanity of life.  With my medical history and status it isn't an option for me now.  

Early detection is key to this disease.  I was fortunate to not have any worse issues from having hcv for 35+ years.

My wishes to all who try the tx, we're all different and react differently.  It would be a miracle for many if this is a cure.  This was just a bit of my story.  

[his3707]

Thanks for posting your journey. Sounds like you have really been through a lot and with your knowledge and experience you could be a big help to those newly diagnosed in coming to terms with this disease.   Bill1954 and wilbb explained so well about some facts you are misinformed about HCV treatment.  Hopefully others hear will also guide you, and get you some updated information about the current effects, treatments, and SVR  cure rates for this disease.   I am so far from expert but am here to learn everything I can.  There are a lot of knowledgable people here who have an ernest desire to educate!  

[samfla]

I should have clarified that the tx has a very low percentage of success if it did not work the first time 'round, which happened to me.  My body was unable to tolerate it.  

As far as the transmittal, I was married for 17 years during which time I had hep c but didn't know it. He was tested after I told him I had zero virus.  I also have a 31 year old son with no traces of the virus.  It's really not that easily transmitted, it's a blood to blood situation, which in my case was iv recreational use with others sharing.  A mistake, but who knew 40 years ago?  A lifelong friend also has hep c - in fact we contracted it at the same time, her husband of 20+ years doesn't have it either.

I'm totally blessed and happy that I received the transplant, very unusual for the time frame as well. Yes, the wester medicine I used saved my life, they were wonderful angels.  I now will need a dual transplant if it happens for a new liver and kidney.  Realistically not counting on this, but I live everday to the fullest I can.  No more hep c tx because of a few factors, one being the kidney failure.

Another point, in case you come across this situation, after transplant, the liver will be attacked by the hep c at an ever faster rate than the original organ.  I didn't know that until recently, but along with antirejection meds there are a lot of issues with my body, too numerous to mention.  And everyone of us is different, different symptoms, results, etc..  I'm just stating my story.  I'm @ 93 lbs right now, so another hep c tx even if I wanted it would make me float away. I was totally unable to eat during that treatment and it was also a quality of life issue since I couldn't move or do much of anything when I was on the tx, it was a continous horrendous flu and every bone in my body ached to where I could barely even walk.

I was told by my Hepotologist that the new tx also includes the peg interferon and Ribvarin with an added med.  

It's the only tx that they have right now, so good luck to all who can tolerate it & hopefully they will have more money to contine the research.  More people have this disease than is fully realized & the push for testing should really be standard at this point in time.

[Fnzol]

" The success stories are all great to hear, but never is that virus gone from your blood, never!  I don't care what anyone says.

Uh, whatever.  

[willbb]

Thanks for posting about your long ,, and sounds like sometimes difficult journey. Your last sentence says alot..yes there is always someone worse off and a positive  attitude will carry us thru much adversity at times,as I imagine it did for you  on many days.

I briefly would like to mention that most of us here are, treated by western medical practitioners and we have to try and put our faith in them,while at the same time being as aware as we possibly can,as I  imagine you did when they performed your transplant and your current hemodialysis.

Thanks again   and good luck to you going forward,   and yes..every day is gravy!

WILL

[Susan_1a_CC]

I hope that your story isn't only of survival but of flourishing and I wish you well.  I do want to address one statement you made:

"And if you have a genotype of 1A it's really a slight chance the tx will do anything to help the hep c.  The success stories are all great to hear, but never is that virus gone from your blood, never!  I don't care what anyone says."

So long as you realize this is your *belief* and not *fact* than you may choose to believe as you will.

[Bill1954]

Hey, good to hear you received transplant. I have to say I think you’re misinformed about the outcome of HCV treatment though:

“From what I've read and experience, men do much better with the treatment that women.  And if you have a genotype of 1A it's really a slight chance the tx will do anything to help the hep c.  The success stories are all great to hear, but never is that virus gone from your blood, never!”

Actually, I believe women respond slightly better to HCV therapy than men, although I think the distinction is slight.

If you treated in 2002, genotype 1 patients had low odds of success. Since then, the addition of pegylated interferon and the oral drug ribavirin has increased statistical odds of long term success (SVR) from roughly 12% to nearly 50%.

While the virus may or may not remain in either blood or other compartments of the body, the fact is that whatever remnants don’t seem to pose a health risk, nor is the patient contagious once SVR has been achieved. This has been proven for twenty years now. The durability of SVR continues to persist; virtually no clinicians challenge this point any longer. It is, in fact a cure from a clinical perspective.

You’ve apparently developed progressive liver disease in your new organ. If you want to prevent further fibrosis, it will be essential to treat your HCV. I’m sure your TP team has discussed this with you; perhaps the kidney disease prevents further treatment efforts?

Good luck and take care-

--Bill