This is the week of our first Chemo treatment | yosoyrosa's Blog

Today were were back on routine, went to church this morning where we looked around and found ourselves surrounded by folks that had been active in the church several years ago when we first became members of the congregation.   Today we sat listening to a sermon about how to pray like we were getting step by step instructions for this week.   Next we were off to breakfast at the local cafe, and then grocery shopping for the week.  Only 3 days left, and we'll be at the hospital and begin treatment in earnest.  

Its funny how we're preparing to do battle, arming ourselves with faith, facts and friends. We're making those calls to those we haven't talked to in a while, and letting them know about the diagnosis.  The word is getting out, more people are telling me they are aware of our situation, and that we're dealing with my husband's cancer.  Some reactions are till 'Oh my Gosh!' to 'yeah, I heard, how bad?' When asked what we need, the answer is 'to keep us in your prayers'.

We refer everyone to the blog as the messenger of progress, what we find out, hoping that nobody will take it as a sign that we don't want to talk.  In fact, its quite the opposite, we love to talk to our friends and family and are eager to answer questions, however we do try to steer conversation about regular things too.  

The last piece of our support foundation is information about the disease, the treatment, and the expectations.  As we go through step-by-step, we refer back to the information give by our doctor for our particular situation, and then search for more answers through published resources, and of course the internet postings and support groups.

If I was asked for what to read, my #1 recommendation at the moment is: 100 Questions & Answers about Hepatitis C, a Lahey Clinic Guide by Stephen C Fabry, MD and R Anarand Narasimhan, MD.  This book covers the Hep C virus, screening, info, liver cancer, and transplant.  So far, this is the closest 'how to' guide I've found for what we're going through.  

Other resource books I've kept in my library include The Liver Disorders and Hepatitis Sourcebook by Howard J. Worman, MD and Living with Hepatitis C, A Survivors Guide by Gregory T Everson, MD, FACP and Hedy Weinberg.

The big question we find ourselves asking this weekend is how rankings are used to match donors to patients needing a transplant, and how long to expect to wait.

It turns out that there is an organization called The United Network for Organ Sharing (UNOS) that operates the procurement & transplantation services under federal contract for US Health & Human Services.  There is a statistical formula that is used called the MELD, or Model for End Stage Liver Disease for candidates 12 and older, while younger patients use the Pediatric model (PELD).  The MELD is a numeric score between 6 (sick) to 40 (gravely ill) based on how urgently (s)he needs a transplant within the next 3 months.  

The number is calculated by using current blood test results for bilirubin (bile production), prothombin time (liver blood clotting factor production) and creatine (kidney function), and the score changes up or down over time waiting on the list.  There is an exception, called Severity 1 patients with sudden onset of liver failure (not already known) that only have a few days to transplant, which is less than 1% of all transplant patients.

It turns out that waiting time is used to 'break a tie' when two candidates have the same match characteristics and same MELD score.  The service also tries to service Status 1 patients locally then regionally, so these patients will always be given an opportunity to do a a transplant if there is a match before us.

If the donor is 18 or older, and no local/regional candidates are found, then the liver is offered to candidates with MELD score of > 15 first locally, then regionally.  If the liver is still available, then it is considered for local then regional candidates with MELD < 15.  Only after all these regional patients are checked as candidates is the liver made available across the US, starting with Status 1 etc.

I used the online tool to plug in test results I have from labs done earlier in the year, and the immediate result is a really low MELD score.  Makes sense to me, as my hubby is otherwise a happy healthy guy with no obvious effects of the cancer.  It would seem we'd never be high enough on the list to qualify which would is a bummer, however there is some statistical adjusting that is done for liver cancer patients in early stage.  There was just that battery of testing done last Wednesday, so we will wait for our results, and ask for our score.  Even then, we're still not sure how long we'll have to wait.