Pre and Post Liver Transplant
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.
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.
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.
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:)
14 thoughts on “Pre and Post Liver Transplant”
Hey Karen sounds like you are starting to heal spiritually and physically. You’re an inspiration to all of us who are experiencing this disease. Only the ones who get this disease understand what we go through. I think there needs to be more awareness in schools, only way we’ll prevent it from becoming an epidemic in our fast pace society. I’m pretty sure I’m going through it too. It’s a terrible thing to go through but if you get a transplant it will make you stronger! You’re an excellent example of strength through the most darkest days. There is light at the end of the tunnel. I’m sober finally and attending AA. First time in years I feel like myself again but without booze. Lost myself somehow but gettin back there, happy to be alive too!
Hay Rob,
It’s so much easier when we can share our inner stuff with someone who gets it. You’re right about education. I wish we could teach more about life skills in place of some of the math! We do see the light, but we’re aware that the tunnel is still a dark and scary place. Moving forward my friend, Thanks so much! I love comments! xo Karen:)
Hi Karen –
I am very grateful that you not only have a gift for writing, but that you are willing to share the good, the bad, and the ugly so freely. But ….. as someone facing a liver transplant, possibly in the spring, I have to admit that a lot of what you said scares the you-know-what out of me. Aren’t you about six months post-transplant? And you are still in this much pain, struggling to sleep, struggling to get out of bed? I had been told it was more like a three month recovery – but, if it’s more, I’d rather know now than be surprised – and discouraged – if it takes a lot longer. Also, the comment about trading one set of problems for another — that’s a punch in the gut, too. I have been told I will feel wonderful, like a new person. I am not looking for the pat answers or the soft sell – I want to know the truth! Thanks.
Lynn ❤️
Lynn,
So glad you asked. It’s hard to write about it ALL. I am a post menopausal woman who lost her estrogen after transplant because it can cause blood clots. That’s part of the sleeplessness and meds can help that. I try and minimize the use of sleep meds though.
The pain in my legs has been there since 48 weeks on Interferon, Ribavirin, and Telaprivir. It’s worse now. Maybe a combination of lack of estrogen, bone density issues, and immunosuppressants? Time will tell.
Do I feel wonderful? Like a new person? YES. And I shout my joy daily at the top of my lungs. I also experience all of the above emotions. I’m told it will take time. Every day I look for signs of feeling better.
Also realize that I work out. Daily. Today was yoga only because I worked out with low weights yesterday. I only walked a mile today. Then I slept. A lot of fellow transplantees marvel at my comeback. We each have to set our own pace.
Today my daughter was sick with a fever and went home after work. I picked up my granddaughter after school and we made my famous potato soup. It was amazing to hear her chatter about how she looks forward to every fall because of potato soup and Ugg boots. I’m SO glad to be here celebrating a new season this year. It is also a new season of life.
I hope this comforts you. I try to frame the darker side of liver disease with my sunny outlook. But I also have to look at my reality, and that of others.
Thanks for the chance to fill in that part. Give me some feedback, ok? Love you, xoKaren
Thanks for your reply, Karen. I somehow missed it until today…
That is interesting about the estrogen. I am also menopausal (about 12 years.) I will have to check with my doctor about the estrogen removal. I hadn’t heard anything about that yet. I have struggled with sleep and used to take meds regularly. I tried diffusing lavender oil and use other essential oils and that helps.
It is hard to hear you went through 48 weeks of that horrific Hep C treatment and still ended up with a transplant. That stinks! I tried that treatment VERY briefly, but just couldn’t hack it. And, at that time (2003) the success rates weren’t that high and, as you know, the treatment was hell.
After living symptom-free with Hep C for over 40 years, I am trying to grasp the reality over the past seven months that my liver is in trouble – cancerous tumor, some ascites, portal hypertension and a real drop in my energy level. Plus my digestive tract is doing some funky things. It is time to put this behind me — but it probably won’t be until the spring. My MELD score is 25. What was yours when they transplanted?
I can so relate to being there for your family! I had grandchild #7 born this past week. I want to see them grow up! I especially am praying that I will be feeling good and fully present during the holidays. So, yes, although I am not afraid of death because I know where I’m going, but…. I WANT TO LIVE!
Grateful for your listening ear. May God bless you with His tangible presence today.
❤️❤️❤️
Hi there! So nice to hear from you. Are you under the care of a transplant hospital? That is so important. 48 weeks of treatment was bad but there are new treatments now. There is one called Harvoni and it can cure you in 12 weeks. Can you imagine 12 weeks? I have a lot of articles on here about my transplant I hope you can take the time to read through them. My blog goes from the Hepatitis C through to my transplant and after. I hope you are getting some help dear one. I understand all about the lack of energy, it is almost as if you have to wake in the morning and decide where you will spend it. I find I have to take a nap every day. I will go like gangbusters and then get so tired and just have to take a nap or a snap as my Aunt would say. Seven grandchildren? You are truly blessed. Please take time to take care of yourself. There is a blog on what meal planning on here. Just go up to the right side of the page under living loving recipes. Please try to drink water to help your liver work well. Keep in touch my dear
A really interesting post, Thanks for mentioning me alongside some great bloggers.your strategies are really mind blowing…
Thank you so much for writing in, I really appreciate hearing from everyone 🙂
Great post,Helpful article for blogger like me thanks for sharing.Keep posting.
I am sorry I did not see your first note to me. I have been trying to recover from a stomach bug
Thanks so much for sharing Karen. I’ve been following your story over the years and my heart goes out to you. Drink in the GRACE!
Hello there! I am sure Karen will be pleased to see your comment. You are so nice to say this, many thanks, Dee
Thank you for all the comments that I have needed to hear. I was told last week that a liver transplant is what I will have in 6 months. If there is any info you all could continue to share..I would be so Grateful..I am fearful of the unknown..of course..I have heard good n bad things about a transplant….
The bad things you hear…. like fatigue, or side effects from meds, or infections, or low immune system blah de blah…. NONE of those things are experienced by someone who is dead. Every day when I face something, I am also joyfully, grateful to be alive. Always… xo Karen
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