I’m a bad blogger – I vacillate between wanting to document my journey on a daily basis and the fear of being “that person” who goes on and on about the most mundane things. My situation doesn’t change much daily and some of my personal struggles I prefer to keep personal. My biggest challenge right now is finding the time and energy to work, serve in the church, spend quality time with my husband and family and maintain our home.
Lately, the defeaning silence of not knowing anything about the living donor process has been wearing on me. A part of me wishes I had never gone down this path; after all, hope deferred makes the heart sick (Proverbs 13:12). Two years ago, all I had to do was wait for my MELD to rise high enough to get the call. I’m still wondering when (or if) that day will come with the added concern whether anyone who’s come forward is a match. Every facet of this is out of my control, yet my mind thinks about it all the time. “Last call for Futility, party of one…”
In the meantime, my body continues to fail in spectacular fashion. I have osteoporosis of the spine, portal hypertension, splenomegaly, anemia (low red/white blood cell counts, platelets, hematocrit & hemoglobin). Most of these things you can’t see. But there’s also the dazzling jaundice, white vertical lines on my toenails, petechiae on my feet and lower legs and constantly itching skin.
I’m also hungry ALL the time. If I didn’t have liver disease, I’d easily weigh 100 pounds more than I do now based on how much I eat. If I have a transplant, I’ll need to learn how to eat normal portions again. How do you go from eating something every hour or two back down to 3 meals per day? I snack so much it’s ridiculous. That’s the only silver lining of this disease. I literally can eat anything I want and not gain weight.
The key word in the paragraph above is “eat anything I want.” To my horror, I discovered that 3-1/2 days of continuously administered IV saline is another story. I gained 10 lbs in 74 hours the last time I was in the hospital. And that was eating 2 small meals per day. I nearly fainted when they brought in the scale and weighed me. I was more depressed about the number than the disease itself. So I’ve discovered I can be sick, weak, tired, yellow as corn, brittle and fragile but I better not be fat. That will be the straw that breaks this camel’s back. Pathetic, I know.
In the spirit of always closing on a positive note, I want to give thanks to the Lord for all He has provided for me. I’m thankful for the relative health I enjoy, including the feral hunger that keeps me nourished enough to keep going. I’m so grateful for my husband, our family and home, the church, my job and health care benefits. I’m thankful for my pets, clothing, clean water, food on the table and a car that runs. And always, I’m grateful for the time God appointed for me to be on the earth. Thanks for walking this journey with me.
All Hail the Queen! Brenda