It's All About Waiting!

Well, I thought I would give "blogging" a try. It might be a good way to keep friends and family updated on the status of waiting for the liver transplant.

So, the story begins . . .
My husband is waiting for a liver transplant. He had Hepatitis C before we had tests to diagnose the problems. We don't know when, where, or how he got it. Finding the answer to that question is not important. Receiving a liver is . . . The wait has gone on for five years. It is amazing how complacent we all become, when you don't think you will really reach the point of needing a liver. That always happens to someone else. Well, not anymore. The wait intensified in January when it was discovered that he had liver cancer as well. Now he's higher on the list and the wait continues. Listed in two regions now, we hope the wait will not be too much longer. Since the "wait" began we, as well as our family and friends, have learned a new language. The words in this new language; MELD, Milan Criteria, Status 1, Hepatocellular Carcinoma, Alpha Feta Protein, Triple Phase CT, MRI, Platelets, Plasma, Chemoembolization, Radio Frequency Ablation. . . It wasn't a choice to learn the language, but rather a necessity for survival.

The journey into the medical world is eased (if that's possible) by the immense number of hospital personnel who have kept the "care" in health care. From the cook in the kitchen who was determined to find a lemon for my husband -- to the Transplant Coordinators who patiently answer ever single question asked of them -- even if they have answered it before, everyone we have encountered has played a critical role in this waiting game.

Without family and friends we would have faltered many times, but knowing they are there, and being strong for them has helped us get to the stage we are at now. Will the call come tonight? Will I make it south through five states to be with my husband in time? What about the family who just lost someone and have given my husband a chance at living? Our thoughts are forever changed on organ donation. That, too, would be someone else who had to make that decision, not us. Now, we truly understand the importance, and the unselfish act by families when they make that decision. It's hard to think about, and harder to discuss. Knowing that someone dies to let someone live. The doctor refers to it as survivor's guilt. They feel it too. To have a doctor take the time to explain that to you, makes it easier somehow. Somehow the wait will still continue tomorrow . . .