Pre and Post Liver Transplant

Pre and Post Liver Transplant 

blood moon liver blog
From my sis in law – Blood Moon

I peer into the darkness several times every night. Sleep is hard to come by, so I toss and turn. My first thought is that I’m so very glad to be alive. All the years of waking up with the dread of knowing that my liver was scarred beyond repair and growing cancerous tumors is gone. I have a beautiful new liver now. Well, it’s used, but new to me. When daylight hits, I stretch to work out the pain and stiffness before I sit up. My bones crackle and muscles ache. Today, I lay there rubbing my heels up and down on my shins in a weird self massage thingy I do lately while thinking about life Pre and Post Liver Transplant.

I would massage myself more often, but my hands hurt. So I got this contraption at Goodwill. It was “like new” in the box. The print and picture clearly show that it can relax my neck muscles if I lay my head on it. I lay all over it. I rub it up and down my legs. I twist my arms around it. I faceplant. Basically, I roll around like a dog in the grass on the thing. It’s a private ritual.

Shiatsu massage ihelpc liver blog
6 Bucks! It was worth it.

After my bed yoga and self massage, I stand up and move my bent over self to the bathroom. By the time I hit the kitchen, my body is straightening. It still hurts. Standing in front of the coffee maker, I roll forward as though in caffeine worship, dangling my hands over my toes. Groaning audibly, I take a deep breath and raise my hands high until my arms are near my ears. I cry silently.

I cry because it hurts and I cry because I’m happy to be alive to feel the pain. Sitting in my chair, I have my journal and coffee. Waking up while writing the absolute truth about my life is a big part of my mental wellness. I make notes of my thoughts as they float by. My shoulders hurt and are drooping. (I sit up straighter now) Should I get on facebook or read about nutrition and exercise? Can brushing the cat put me in a meditative state? I need to go for a walk. That counts as prayer. I really want to go back to bed. Dancing to Led Zeppelin’s Wanton Song counts as exercise.

Worrisome thoughts are threaded throughout. Should I have an MRI or a CAT Scan for cancer checks? The insurance thing. My future meds. My careless comment may have hurt someone I love. I don’t want to answer the phone today. I’m afraid. What is the balance on my credit card? Why do I feel like crying?

Most days, I give in to the tears. By attaching an emotion to them, I am able to experience some healing. I’m not talking a big daily boo hoo. Sometimes it’s hard lump in my throat at the enormity of it all. I can and do let it rush out with great noise. The emotions run the gamut from elation at being alive to wonder and awe at the miracle of modern medicine. Then there is the knife in the gut fear associated with the loss of insurance needed to pay for my medicine.

I realize what a vulnerable position we are in post transplant. My surgeon spoke to me about how I was trading one set of problems for another. I’m slowly understanding that and making the transition. I’m going to list a few of the here’s and gone’s that are my life. You may be pre or post transplant, but I’m sure you’ll be able to identify with some aspects of it.

Gone is the fear of liver cancer, bleeding varices, hepatic encephalopathy, intense brain fog, no muscle mass, fatigue, low aerobic capacity, cirrhosis and all it’s related issues like ascites, jaundice, high ALT/AST numbers… to name a few.

Here is fear of rejection, headaches, confusion, long term effects of hepatic encephalopathy, nausea from rejection drugs, shaky hands and knees, deep muscular and bone pain and stiffness, brain fogginess … to name a few.

My thoughts eventually and always wonder toward things that are uplifting. Finding my place in this new world post Hepatitis C treatment and post transplant is like an old church I know. I stayed in a convent in France simply for the silent sacred rest and joy. Many hours were spent in the bottom floor that grew out of the mountain. I ironed priestly vestments every morning before going out. Sitting on the city wall, I was connected to the men and women who had occupied that same space across time.

cordes france liver cirrhosis blog ihelpc
It was this time of year – see the iron in the window?

The thriving convent housed an orphanage during the dark ages. In the 70’s it was rediscovered. Long abandoned, the church had become overgrown with trees and rubbish. A group came in and began the arduous task of cleaning it up. Some of the original paintings on the basement wall were restored. They brought it back to the place where it could once again serve the community.

Gone are the cries of orphans and wounded who were served during the crusades, doors locked to protect from bloodshed, the thick branches that snaked through the cracked garden windows, trash piled in corners, rats and vermin, … to name a few.

Here are bells ringing and songs singing, a baker named Elvis from South America, a young woman from Africa escaping from things I will never understand, the well worn brick oven baking daily bread, the table whose warped and rounded edges make a comfortable place to relax and bow in silent gratitude … to name a few.

Everything comes full circle. Life has never been without pain, sorrow, and fear. Like that old church, we stand the test of time. We always have our place of usefulness, sorrow, and gladness. Some days are dancing, others days are bed warming. A time to run, and a time to rest. Rejoicing to be alive for what is here and thankful for what is gone.

liver translant ihelpc cordes france
Several years before my diagnosis of Hep C. Probably stage 2 cirrhosis.

It’s my story and it heals me to tell it. You too, struggle with the good and bad. Write it out. Let it be what it is. It’s how we feel and it’s all always good. I always love you, xo Karen:)