Liver Transplant?

[Purple52]

Hi all: My name is Jack and live in St. Pete Fl. I'm a 61 y/o male who was diagnosed with Hep C 10 years ago and was put on Interferon @ Rebatrol. After 3 months I became intolerant due to mental issues. Yesterday I saw my GI Dr and was told I have F4 cirrhosis with the following blood test results:

HCV RNA : 907149

Hepascore: 0.99

Hyaluronic Acid: 149

Alpha 2 Macroglobulin: 481

AST: 68

ALT: 63

My GI wants to put on Solvaldi. I don't understand why because the damage is already done and a transplant may be an option. Solvaldi is 1000.00 per tablet! Does this make sense to anyone else?

Thanks,

Jack

[orphanedhawk]

I just read where you say you haven't asked many questions of your GI but prefer to do treatment first.

It is very important to be as informed as possible. You have to be your own advocate. Write down all your questions and bring them to your doctor's appointments.

Here is a list I composed a while back for those getting ready to do treatment. I hope it helps.

Questions for doctor for newbies to tx
May 05, 2012 - 4 comments - (Public)

It is always preferable to have a hepatologist, a liver specialist and not simply a GI to help you with treatment. A GP is not trained in liver issues and should be the one to refer you to the specialist.

Questions for the doctor:

How experienced are you in dealing with Hep C ?
Do I need a biopsy before treatment?
How often will I be doing labs during treatment?
What is your protocol for dealing with low wbc or rbc?
What about other side effects?
How often will I be seeing you during treatment?
Who do I contact in an emergency ?

http://www.medhelp.org/posts/Hepatitis-C/Going-back-in/show/1785793#post_8220897

Will I be able to have copies of all my labs and tests ?
Will you be available via phone or email to answer my questions ?

[orphanedhawk]

I want to agree with what livelife said~ a MELD score of 6 is very good and nothing to make you think about a transplant anything in the near future.

It's true that getting a transplant does not get rid of the virus. The sooner you do the treatment and get rid of this nasty virus, the better.

Good luck.

[Livelife777]

Hi again.   Meld 6 is a great score.   When I started my Hep C treatment  my meld score was an 8.   I just found out this week that I am cured  (thru treatment) and no longer have Hep C.   I did have blood drawn also this week and my meld score is now a 6.  I was on the transplant list 10 months ago and was removed from the list a few months ago.   What that means is my liver now has improved so much that my docs say its showing signs of regeneration.   I go to Mayo Clinic.   They said that they wouldn't be surprised that in 1year from now it could be, an F2.   What that says to me is "Get Treatment ".    Enough said!         Good Luck.      Kim.  

[heart_in_the_keyes]

If you are a transplant list they want to be rid of the HCV before the transplant if you can because after the transplant you will be getting use to immenos and other drugs.  

Plus just because you get a transplant it doesn't rid you of the HCV.  The HCV a disease of your blood and  will eventually start effecting your new liver.  

I am on transplant list.  Diagnosed officially '96.  At that time had no cirrhosis.  Was a non-responder on 4 different trails in late '90's earlier 2000's.  Had major problems with the interferon or even a peg or any kind of mix that had interferon.  

There is a difference in levels of cirrhosis.  There is compensated and decompensated.  Each type has 4 stages and each stage has 3 levels of low, moderate, high.  

Compensated is good.  A compensated liver can rejuvenate once you rid your body of what is attacking the liver.  
Decompensated is not good. It is when your liver is actually starts to die.

Each level and each stage can take different periods of time for different people.

I am stage 4 ... decompensated / moderate level...my MELD score is 12.  I am currently being treated with sovaldi and riba to kill off the HCV.  

HCV cells are in a strand.  The sovaldi comes in and snips the cells apart in the HCV strand and the riba comes in like little warships and attack the now free floating HCV blood cells.  If you are put on this you will have weekly blood tests to watch your blood platelets;  

Yes it is expensive.  Once I was okayed and put on a list the medical company that handles the distribution of sovaldi in our state contacted me and we went over costs.  My only income is Medicare at this time.  I have Medicare and a supplemental medical policy and a supplemental drug policy.  There was no way I could do a copay for 13,500 a month and they went through a foundation and covered all expenses for the medication.  I am not on Medicaid.  Can't get it because I make a few hundred bucks too much each month on my Medicare check out of which I pay rent, bills, supplemental insurance, car insurance, medicine co-pays.  Had always planned to work forever,  

Whether you want to start this or not is up to you.  But guidelines for someone with active HCV when they get transplanted is they get transplanted with a liver of a active HCV donor.  If you get rid of the HCV before you get the transplant they will be transplanting you with a liver without HCV.  

Wow really a meld of 6??? That's very low and now would be a good time to start treatment.  Remember what I said...there are different stages and levels of cirrhosis.  I ask my doc who is well known and an expert in this field about a year ago what percentage of my liver was still alive.   he said zero.  I said that made no sense since I was walking, talking, etc...he said I was stage 4, DEcompensated, moderate level with low MELD but high HCV load.   I need a liver,...but so do approximately 16,900 people who are sitting on the liver transplant list too.  So in the meantime have made major adjustments to diet and life style.

I use to take a break for about 10 days every year....last two weeks of April and stay on St. Pete Beach.  Back then I walked that strip of sand from north to south and back....making many tiki bar stops....there was this one that had a real HUGE exotic bird who was on a stand and would talk to you while the bartender would make fresh grapefruit or oj drink for me.  Also thought I'd end up working at the Don...I love that hotel... or being a waitress at the Howard Johnson's.....love St Pete Beach.  

[FlGuy]

Seems to that there's a doctor disconnect somewhere.  You should do a liitle more research by accessing the interweb, this site or other sources.  Here's a start.  Doc said MELD = 6?

http://www.cpmc.org/advanced/liver/patients/topics/MELD.html#What is MELD? How will it be used?

[Purple52]

Thanks Nan, I plan is to start the Sovaldi ASAP.
Jack

[nan535]

Jack,

The reason I asked for your genotype and whether you had symptoms of decompensation is that will help your doctors decide what hep C treatment is best recommended for you.
http://www.hcvguidelines.org/fullreport  see page 44 of the report.

My husband is post transplant (2 years) and has recurrent Hep C (along with bile duct complications) which have now caused cirrhosis of the new liver.
Based on his experience,  my advice to you is if you are able to be treated safely, do so asap.   My husband is on treatment now, week 20 of 24 weeks. It has been a very tough road for the both of us. I wish he had been able to clear this virus before transplant. It you have that opportunity, then do it. You will avoid so much, if your do need a transplant.

Best of luck to you.

Nan

[Purple52]

New Blood Test:
Hepascore - 0.99
Hyaluronic Acid - 149
Alpha 2 Macroglobulin – 481
Glucose- 103
BUN – 26
Alkaline Phosphatase – 118
AST – 68
ALT – 63
Red Blood Count – 4.07
Hemoglobin – 13.0
%Saturation – 16
Alpha Fetoprotein Tumor Marker – 9.7

I don't understand what these levels mean?

[patra_]

I agree with all that was said above.  The main point is that the virus is blood borne and would reinfect a new liver quickly and virulently.  Treatment now will, at the least give your liver a chance to work its magic and maybe improve to where you won't need the transplant - at least for a while - and by then the new drug in trials now - which appears to have a 90%+ fire rate will be available.  

Second point: as Livelife said, there are people on this site who had NO insurance and got treatment for very little or NO co-pay; also many of us with insurance, co-pays and still needed help, which we got.

Third point: IF it came down to a transplant:  my husband and I had lunch with some friends just this week.  I knew he was a liver transplant survivor (19+ years now) so I asked about his history, if he did mind me getting personal.  Well, he told me a lot, but the ONE thing that really got my attention was that he was advanced over 2 other candidates because they had Hepcandm AND HAD NOT HAD TREATMENT FOR IT, so their survival chances we not as good as his.  Remember this was 19 years ago, BUT taking the treatment - Hopefully to SVR - improves chances at transplants, also.

I am not trying to frighten you - only to point out that there is every reason to treat now.  The BIGGEST is that you may neve need a transplant.

Glad you decided to go with treatment.  Hope to meet you, and everyone, at SVR I'm on Day 11 of 168, but whose counting?).

[Purple52]

MELD score was 6?

[FlGuy]

Studies have shown that damage to liver can be reversed, over time, in the absence of HCV.  Meaning that fibrosis and be reveresed.  Without a complete evaluation of the liver (biopsy) your doc does not know fully what he's working with.  It's always best to reatin the original equipemt that came installed and if successful treament can eliminate the need for a transplant you would be much better off.  Keep in mind that if you get a liver transaplant you will still have HCV unless you are "cured" before the transplant

[Purple52]

I don't know how they came up with with F4. All they had was blood tests, ultrasound, and endoscopy.  Said the genotype was 1A. I did not have a liver biopsy. I have not yet had a evaluated by a transplant center. These are my questions I need to ask my GI. I never thought what to ask.  I have decided to try the TX first.

Thanks to all for the responses.

Jack

[Livelife777]

Hi and it's good you posted as your questions are valid.  If you treat now your liver may recover enough that a transplant is not needed.  If you should wait and get a new liver, you will still have Hep C and will still need the meds to clear it.  When or if, you get a new liver the virus attacks quickly and can be destroyed if you do t treat.   So, either way the virus needs to go.   Yes it's costly, but how much does a transplant cost with anti rejection meds that you take your whole life.   We can help you to get assistance covering the cost of the hep c meds.  It's a personal decision as to treat now or later, but in my mind,  sooner then later would be a better option.
Take care.    Kim

[dontworry_behappy1]

The person posting for answers is "Purple52".  I don't have cirrhosis and I already treated my hepatitis C.  Your suggestions are really good tho for
"Purple52".  I hope they take your advice.

Best to you

[streamline569]

If you have a hep c support group in your area I would suggest going to meetings.  

[streamline569]

I treated successfully,  3 years in Dec. SVR . I was early cirrhosis, platelets were at 70, I couldn't hold weight, I was down to 100 lbs.Fatigue, no appetite, I think I was close to not be able to treat, if my platelets dropped any lower. Well I am happy to report that after the first year I started to see my platelets climb. Last weeks blood test they were up to 148...I'm just amazed at what the virus was doing to my liver. You're so very lucky that you can start the latest drug, side effect free. Triple therapy was hard...

[dontworry_behappy1]

$1000 a pill does sound like a crazy amount but it's nothing new that hepatitis C treatment is very expense.   I treated a few years ago and that drug treatment  also cost a whole lot of $$$$$.   There is assistance with the financial part of treatment.   Sound like your doctor wants you to get going and treat your hepatitis C.  Many treat their hepatitis C who have cirrhosis.
You can treat it now or when it comes back after a liver transplant.  A liver transplant doesn't get rid of your Hepatitis C.  

Best to you

[nan535]

Welcome to the forum.

Could you answer a couple of questions for us?

1.  What is your genotype?
2.  How did your doctor determine you had F4 Cirrhosis? Did you have a liver biopsy?
3.  Do you have any signs of decompensated cirrhosis (including portal hypertension, esophageal/stomach  varices, edema, ascites, or hepatic encephalopathy).
4.  Have you been evaluated for transplant at a transplant center by a hepatologist?

The answers to these questions may better help us to offer you some advice based on our own experiences.

Nan

[orphanedhawk]

If you are serious about thinking you need a transplant than the number you want is something called your MELD score. Google it, and you'll find how to figure out what yours is and whether or not you are anywhere close to needing a transplant.

Your viral load means nothing other than while doing treatment as it shows whether treatment is working. You can have a low viral load and massive liver damage, or a high one and have no damage. It's an illogical virus.

BTW; Many people have beat the virus with beginning cirrhosis and in time, their livers have healed. It's an amazing organ.

[AWorriedMom]

Cirrhosis does not mean that you cannot treat. In fact, even people with cirrhosis can have improvement in liver histology and over the years get rid of cirrhosis. It does not sound like it is too late to me. If you do not have insurance, the pharmaceutical companies often give you the drugs. I would seriously consider treatment if I were you. It is a thousand times easier than interferon and ribavirin.

[FlGuy]

How did the doc determine F4 cirrhosis?  Was the lab work accompanied by a current biopsy?

[mona400]

Jake,
Just wanted to say welcome to the forum and let you know there are a lot of knowledgeable people on here that can give you way more info than I can. I do know that even with a transplant you still have to get rid of the virus and now is the best time.
Good luck to you, Mona