Hep C Discussion Forum

Hi Dave,

Thanks for your post. It makes us treasure the treatment advances and best wishes for your future. Keep us informed. Cheers, mate.

Hi Dave and thank you for sharing your story. I'm sorry you're having to go through this, but it sounds like you've got a very good attitude and are preparing for the eventual transplant correctly and honestly. I wish you the very best and am impressed with your knowledge, preparation and the commitment of your support group. I appreciate your willingness to share your story. You're in a good place to share and receive information, I hope you continue to check in and keep us informed of your progress. Good luck Dave!

Hello all,

Just wanted to say thanks for the positive words and info as is always welcomed.

Today is Thursday October 17, as I read through some of the responses, I see

reference to the Gilead treatment, however since I have had the barbaric

interferon tx back in 2000, and just finished the incivek triple combo treatment

within the past year, I'm told that I wouldn't be able to treat with it and the

outlook is full transplant, however as of this writing I just completed the required

testing workup for transplant, other than the bad liver, I could be considered a very

healthy 50 yr old, now that the test have been completed, my coordinator is going to try

and take it to committee on Tuesday 10/22, if not then definitely the following week,

based on my most current blood work my meld score is 14, and they won't even begin

to consider transplant until a meld of 25 with 28-35 being the most preferred, and 35

being most severe, I'm also told that in my region transplant candidates with A+ blood

tend to take longer on the waiting list, unfortunately I'm A+, on a better note while I met

with the transplant surgeon and went over my blood work, my HCV quantitative shows

a <12, which according to his comment, he isn't sure how that could even been detected,

so I'm sure the committee will want fresh blood to test again before placement on the list,

however it would be a blessing if the virus is gone, these are the requirements in my area,

other transplant facilities may have more or less restrictive requirements, but they are

all on the same UNOS network. 

For anyone who may be entering this endeavor, be prepared for one of the most rigorous

round of test you've ever experienced, you will see everyone from psychology to dietary,

financial, support group, and after that you begin everything from chest x ray, stress test,

liver ct scan, arterial gas test, breathing test, etc.. etc..,so by the time their finished with you,

you will definitely know if there are any underlying issues, hence my comment for knowing

aside from liver being very healthy.

Also anyone who is a candidate for transplant or may soon have to travel that road, conformance

is priority 1 to the transplant program, so all smokers, drinkers beware, you must quit and stay

quit and here is the reason why, there are many others that are waiting for an organ, they will

not transplant you until you have been totally clean of nicotine, alcohol, THC, etc..  for a minimum

of 6 months, if you can't abstain you will be dropped from the list, after your transplant you

will be on immunosuppressant's for 6 mos, along with the anti rejection drugs, so you have no

immune system otherwise it would fight the new liver as an invasive organ, using any of the above

could cause bacterial/viral infection and I'm sure it doesn't need explanation on what that could do.

Another very important part of the transplant is your support group, they will want to know that

someone can be with you for the first six months around the clock as they say you can't be left

alone in case of rejection problems or any form of illness, also as mentioned you will be taking

3 drugs, the first is the immunosuppressant, the other 2 are the anti rejection drugs, (these 2

you will take for the rest of your life) in my area the drug prices are a combined $178 a month

falling off to 78 after the 6 months, they will want to know and may even require that someone

provide them with a credit card number or financial statement, stating that if for any reason you

can't afford your drugs they will pay for them for you.

Also once your on the list be prepared for that phone call, they will try 3 times or 3 numbers you

supplied them then you have a set amount of time to call them back if time expires they move to

next candidate, also you could be called in and be prepped and they come back and cancel because

the organ was bad, then you go back home and wait, I met a double lung transplant patient and

he was in OR prepped twice and had to go back home because something was wrong with the

donor lungs, most likely you won't know definitely if your getting the transplant until they put you

under.

For anyone that would like to know what their MELD score is, just Google meld calculator and you

will be able to find your score by entering the Bilirubin, Creatinine, & INR, below is a guide on lab

test once your meld score reaches a certain range, also meld stands for Model for End-Stage Liver Disease.

Lab Test Frequency

• MELD score greater than or equal to 25; Labs needed every 7 days
• MELD score 24-19; Labs needed every 30 days
• MELD score 18-11; Labs needed every 90 days
• MELD score less than or equal to 10; Labs needed every year

I'm really sorry that this is so long, but I feel the need to give this info so that it may help someone else or

their family, the link is actually for family members to be able to understand what their loved one is

experiencing, I have already been diagnosed with HEPATIC ENCEPHALOPATHY which is damage to the brain

caused from damaged liver, the provided link is http://www.hesback.com/, informative for families who

has someone that is starting to experience this, my diagnosis while still mild still has it's effects on me,

one minute I can be happy go lucky, the next mad as hell, or mean and nasty, or sorrowful and crying,

my short term memory seems to be getting worse, I can walk from one room to the other to tell my

wife or kids something and by the time I get there I've forgotten what I was going to say, while in a

conversation, if there is any disruption or I get interrupted I'll completely forget what I was even saying,

so please as a family member that has a loved one who may be going through this, watch this video,

at those times when things are the most trying it will help you understand it isn't the one you love, its

their illness that is doing it to them.

I wish everyone going through these battles the very best of luck, hang in there, my doctors are telling

me that new eradicators are coming and they're not packing the side effects we've had to endure so far.

Again thanks to those that have responded and look forward to hearing from you.

Dave

Save a life, be an organ donor, a donor may one day save your life!!

-- Edited by Dover514 on Thursday 17th of October 2013 10:24:51 AM

hi Dave

hope you gonna kick it out for good this time with Gileads combo ;)

btw, apparently green tea has a nice properties against hcv reinfection in liver tranpslatation patients.

http://www.hepatitis-central.com/mt/archives/2011/12/green_tea_and_h.html

might consider drinking it after liver transplatation? might damn monster wont be able to reinfect new liver

all the best

Hi again Dave, very sorry to hear about your current situation.  It makes good sense to try and get into a study at this point and, as Malcolm pointed out, Gilead`s new drug trials are likely to be the most suitable for you now.  Do keep in touch and let us know how you get on, we`ll be here for you.

Wishing you the best of luck, keep moving forward.  ~ Jill

Hi Dave,

Welcome back, but sorry you've got to come back. From your previous posts, I see you were on triple Rx, possibly with Incivek, Peg and Riba. You are a bit restricted with the new drugs as you won't be able to use another antiprotease, but the new Gilead combination looks good ( NS5A and NS5B) blockers. Have you had a recent biopsy? Good luck.