Whew! My Lab Results Improve

Last week it was time to have blood work done again and I'm SO pleased to say that, for the most part, the numbers look much better. My MELD score, which was 9 two months ago and 12 last month, dropped to 8. What a relief!

My AFP test rose from 106 to 137, but I'm still not worried at this point. It would have to rise to the 400 to 500+ before I start wringing my hands.

My heptologist, a fabulous doctor, called me personally to tell me the results and discuss what's next. First, I'm going to take metformin again to help control my blood sugar. And in a month or so, I'll probably switch from prograf to cyclosporine. This change will make it possible for me to take one of the new Hep C meds, if they become available to transplant patients. I'm not sure whether I'll want to take the meds, but I'll ponder that matter if and when the opportunity arises.

In the meantime the docs will monitor my MELD score and AFP test results, and I'll be on the lookout for any signs of ascites (edema), varices (esophageal bleeding) and encephalopathy (I refer to it as "liver dementia"), which are indications of advanced cirrhosis. Mostly, though, I will enjoy this world and the people in it.

No! I Wasn't Ready for This!

Nine.

That's my meld score. My transplant coordinator told me and my husband in early July, as my release from the hospital for hernia surgery was being coordinated. (It was repeat surgery to try to fix the incisional hernia that developed during my original transplant: The surgery didn't work then and doesn't seem to have worked this time, either. But that's another story.)

We had my surgeon do a liver biopsy while he was in the neighborhood, so to speak, and the lab review showed that my transplanted liver is cirrhotic. So my coordinator did some math and I'm a nine.

I've spent the past month trying to find a graceful way to share this news and I'm still struggling. The hardest part - and oh, my God it was so hard - was telling my kids. They are older teens, but they still need a Mom. It's almost certain that I won't be around long enough to see them graduate from college, or marry or have granchildren. That's just not fair.

There's also so much I want to do with my wonderful husband.

I'd handle this better if I could reach a point where I'd focus on the many tasks that need to be tackled, like a will and organizing papers. However, the past five weeks have been spend recouperating. Beyond that, I still can't talk about it without crying.

What about clinical trials? Those new Hep C meds? A second liver transplant? All very unlikely for many reasons, which I'll explain in future posts.

Please excuse the pity party. I'll find helpful info to share soon. I wish every person reading this blog good luck because there's a lot of it to be found.

Photo by Alaina Cherup

Emailing Friends and Family

My family and I are blessed with the most loving, caring, kind and generous group of friends and relatives in the world. Without them, we couldn't have survived our struggle. To keep the gang informed, we sent emails before, during and after my transplant. My husband, Gene – bless him – was Chief Communicator during my prolonged hospital stay. And my sister, Dene, printed out the emails and gave them to me once I was home, which helped me piece together what happened during and after my transplant. Here is the first of the transplant emails, which I sent to our friends Dec. 1, 2006 – less than 24 hours before we received THE CALL.

Dear Family and Friends - It's official! Weds., Nov. 29, my name was placed on the liver transplant list. After months of screens and tests, meetings, doctors' appointments, medicine, red tape, side effects and lots of WAITING, I'm excited and anxious to finally reach this milestone.

Along with this good news, we learned that my blood work results show that my liver functions are deteriorating at a pretty rapid pace. Here's the scoop - a MELD (Model for End-stage Liver Disease) score is used to prioritize transplant patients; three components of a blood test are used to calculate the score. For the past five months or so my MELD score has been 20 (which is fairly elevated); but in the past four weeks the score has jumped to 24. While this is disconcerting, it significantly increases my priority for transplant.

So... it looks like Santa will bring me the gift I want for Christmas: A new liver! At least, it is my hope that the operation will occur very soon. Gene will become the official communicator for a while and will keep you posted about the transplant.

Thanks so much for all of your good wishes and prayers, which I can use now more than ever. And thanks also for spreading the word about becoming an organ donor and donating blood. It surely means a lot to me and other people who need organs, blood, etc.

Have a great holiday season! We'll be in touch. xo - Jay & Gene

The Transplant Waiting List

Waiting for surgery that will save your life. Unsure when THE CALL will come. Realizing that someone must die in order for you to survive. This part of the transplant process is hell.

Not knowing drives me nuts. I’d rather have too much information than too little. Yet most of the waiting process for transplants is, literally, in God’s hands. The docs might know a little something but they aren't very forthcoming.

I don't know how other transplant centers share information about their transplant waiting lists, but my center didn't disclose details about how many people were on its list, how sick they were, where I ranked, etc. So in the absence of information, I obsessed and searched the Internet for answers.

One thing I learned is that transplant priority is now determined by how ill a patient is, not by how long he or she has been on the waiting list. The protocol for ranking liver transplant patients changed in 2002 when the MELD score (Model for End-stage Liver Disease) became part of the calculation to determine priority among candidates. In general, MELD uses blood test results to determine the three-month mortality rate for each person awaiting liver transplant - the higher the score, the more ill the patient. (More about MELD scores another day).

I was able to fairly accurately determine my MELD score by using an online MELD calculator. Knowing my score, however, didn't answer my questions. But I got lucky.

During one of my Internet searches I stumbled upon a tremendous resource, the key to my questions, the portal to liver transplant waiting lists, aka: http://www.optn.org/ (the website for the Organ Procurement and Transplantation Network). Thirty minutes of experimenting and one advanced data report later, I had my answer: I was able to determine the number of liver transplant patients on the waiting list at my center, broken in detail by gender, race, age range, blood type, disease and more. Updated weekly, the reports kept me informed about other people on the waiting list and allowed me to better anticipate how long my wait might be once I was officially added. Simply knowing this info helped me manage my expectations and put my mind a bit more at ease.

FYI for patients awaiting other types of transplants: The website includes info for all types of organ transplants, not just liver, and includes centers throughout the US. Access is free and available to anyone.