Coming Home After My Liver Transplant
This blog and subsequent ones will undoubtably be a hot mess. Given the batch of meds, steroids, and the anesthesia hangover – I promise nothing in regard to editing or coherency. Nothing except the truth about life post transplant.
The first few weeks coming home after my liver transplant is highly unpredictable…. and that is the understatement of the year. Given the galloping speed with which I always proceed through my daily life, it quickly became evident that I needed to establish some order.
Except I was powerless. I was also in constant pain, downing 30 pills a day, high strung on steroids, and so happy that I couldn’t quit saying Thank You to everyone for everything. I also frequently raised my shirt and gazed with sheer adoration at my scar and the precious gift my donor had given me. Laughter and tears and Joy Joy Joy was my emotional state. But my physical state was in need of a lot of attention. I was not in any shape to handle that. The transplant team knews this and made sure that the caregiver support was in place while I was in the process of being listed.
Yes, I was a hot mess. Oh, but I do have a knack for planning ahead. See, I had been feverishly working on setting up my post transplant plan for months. I took into consideration where to live, what I would need, who would care for me, how I would get around, what the menu would be, how to pay for such stuffs. My transplant team, family, and friends all helped a lot, but the legwork was mine. So my little plan all fell into place just like clockwork. Thank God, because my brain on steroids went a little koo koo.
Landing at Linda’s – For those of you who don’t know, Linda is my friend who got her liver 4 years ago with Dr. Duffy at Nazhi Zuhdi Transplant Center. We have a lot in common. Like we both wear OPI Pompeii Pink toenail polish and we both have a mercedes scar across our tummy. Gazz understands the important stuff about recovering from a liver transplant. Since I can’t string 2 sentences together most of the time, she even anticipates what I’m thinking. This is a lifelong friendship in the making and it’s nothing short of a miracle.
My Jewel of a cousin, Julie, arrived the night before I was dismissed from Integris Baptist. She opened my heart and mind to a new level of healing after the cancer diagnosis, and literally took time from her glamorous job on the West Coast to come live in Oklahoma and walk beside me in recovery. We have been joined at the heart since childhood and our journeys have melted into a warm nourishing pot of mutual respect and unwavering trust.
Before I came home from the hospital, Lovely Linda Lou set up Command Central at her kitchen table. Actually she set up her entire house as healing center for post transplant recovery. I’m going to highlight the most important place. No matter what you are going through physically, you will be able to identify with the idea of a place to make sure that the work of staying alive is accomplished.
Command Central – The kitchen table is the center of all activity. We begin and end our day here. Some of the time it is just me as Julie and Linda move in and out and around doing their own thing, but several times a day we all congregate there to chat, eat, read, or play. The pile of stuff swells to overflowing and then we clean up. Within hours the conglomerate of assorted items grows again. The box of my meds is center stage. Filling a pill pack a week at a time is helpful, but the box also contains Tylenol, Oxycodone, and Xanax for pain and also to chill me out with steroids. I stay comfortable enough to move but slow enough to reduce my tendency to train for the Olympics.
My blood pressure cuff and thermometer are there to record stats 4 times daily. That way my transplant coordinator can follow trends and monitor changes. Any fever could indicate rejection and high blood pressure can mean trouble for my new stitched in hepatic artery. Beside that is a make-up bag, journal, and a continuous flow of liver loving food.
I quickly learned that sinking into a couch can create a situation that requires lots of meds and hands pulling me back up. Straight back kitchen chairs are the most comfortable way to sit when a back spasm strikes. A little pillow at my lower back seems to reduce the grabbing pain that shoots through. My feet don’t touch the floor, so we have a box that serves as a footstool of sorts. I don’t cross my legs and that seems to help with pain too. We keep a towel on the back of the chair just to wrap around a 12 x 20 ice pack. When I press my back into that pillow/ice combo, it gives sweet, if only temporary relief from pain and stiffness.
If you are having any type of surgery, especially a liver transplant, your command central will be tailored to fit your personality and personal likes. It has become the gathering place for us all for most of the day. A large Mason jar is my reminder to drink plenty of fluids. I ’m using Brita to avoid tap water from the sink and am going for about 80 – 100 oz a day just to flush out.
My first day here, Linda brought out a make-up mirror and it has stayed at Command Central. A girl has got to try and look good. My assortment of creams and cosmetics sit beside me on the floor. We all three got our glam on and took pics. We exfoliate and plump, fix hair and try on jewelry. One day I got drugged up and texted pics to my grandkids. They asked their mom about brain damage…..
One day I tilted the mirror and started singing an old Up With People Tune, “Gee I’m Looking Forward to the Future” and of course that made me cry. Linda kept singing to me, “I Feel Pretty Oh So Pretty” to raise my spirits and encourage me to pamper just a bit. Yes, the table also held the songbook for Karaoke night and we sang our butts off. I wore my nightgown and did a little more shaking than I needed to on “I’m So Excited”. I was too sore to fall out of bed the next morning. IDK what I was thinking.
For sure Right Thinking is easier with orange sticky notes. With a journal beside me and a variety of colored pens, I have taken notes on everything from the dosage of immunosupressants to when I last had a bowel movement. A block of bright orange sticky notes have been one of my most valuable tools. At first a way to note any thoughts that I wanted to remember (nothing stays for more than 5 seconds some days) they kind of became my brain. As we 3 girls discuss important matters like how the mind works and whether or not it is possible to retrain your body using willpower and self control using empowering positive thoughts, we made notes.
Yes, I am still capable of higher thought. But some of my notes look like they were written by a 3 year old. For a few days when pain was severe, it was filled with times when I could take hydrocodone. Valuable stuff, these sticky notes. They remind me of who I am at this moment and who I am becoming through this process.
Oh my, what a story to tell of who that is. A woman with a man’s liver. Grateful. Praying. Singing. Dancing. no longer sick. Healing. Reading. Laughing. Celebrating. Loving you, xxoo Karen:)
22 thoughts on “Coming Home After My Liver Transplant”
You are one of the brightest inspiration in this world. Thank you for teaching me patience, persistence, and perserverance.
Susan recently posted…Coming Home After My Liver Transplant
AWWW, thanks so much. So sweet of you, I get a lot of inspiration from people who write in.
You look and sound great Karen!
Dave
This is exactly how I felt when recovering. Except I am diabetic and am quite heavy. Even tho its been 5 plus yrs. After reading your blog…memories came flooding back to me. The ups and downs and meds…oh the meds….have a wonderful husband and family that saw me thru as you have close friends…am glad you are doin great up to this point of your recovery and with the Grace of God you shall continue your journey unscathed. Hugs and prayers…Kara
Hello! Thanks so much for reaching out and for sharing your story. It inspires me to be grateful for every I am given, thanks so much, Dee
Karen, I am so very happy for you. And thank you – for posting an accurate, realistic story about being a Liver Transplant Recipient. It IS major surgery, and takes some getting used to. As you know, I had my TP this last January. After some complications, my recovery continues. AS I enter my 5th month Post Transplant, I am now doing much better. Each of us is in a varying stage of illness when we are called for Transplant, so recovery times and experiences can differ widely. Aside from one diagnostic post-TP Mishap, I would rate my Recovery as “Average”. It would have been nice, to be a Model Patient – one who is doing handsprings across the lawn, 3 weeks post-TP, but such was not my destiny LOL. All in all, I wake up every day, very grateful to be alive, and I also say: Thank You, Thank You, to all who made it happen. At least once, every single day, I MARVEL at the fact that I am alive. Be well, and may your recovery continue to fullness and completion, very soon. RL
Hello, like you I just read Karen’s latest blog. It really lets one know how hard a transplant is and how long the recovery is. I am glad you are doing so well. Thank you for sharing, Dee
Absolutely incredible journey Ty for keeping the share door open… Love you Grace Warrior ❤️
Hey there lady! Gosh Karens story is so amazing! I just finished reading this latest, brought tears to my eyes. Thanks for writing.
It’s great to read your blog and know that you are recovering. I’ve just returned from 10 wonderful days at St Pete Beach, FL. It was a restful, fun time that was much needed and appreciated. God is good! God bless you and your awesome team!
Hey there, just the thought of your trip sounds so very very nice. Wish I could do something like that. Take Care
Good Morning Sunshine! The pillow behind the low back helps me very much Also I just read a book called Stroke of Insight about a woman who had a stroke and she was able to retrain her brain.
I know that everything will come back for you. Surgery takes a lot out of you. It took me months to feel better after my back surgery and you will do it as you are much more proactive and positive than I am LOL
I am keeping track as well as I can here in applacia
I know that is not the way it is spelled but they don’t have spell check here haha
Love you bunches, Dee
Dee Ernst recently posted…Coming Home After My Liver Transplant
Appalacia (sp?)
Dee Ernst recently posted…Coming Home After My Liver Transplant
Karen,
I have been thinking about you and checking your blog daily. Please relax and recover fast. We love you so much 🙂
Hi Karen…it will get better, being almost 12 years out I can hardly remember all of these issues, and I was in the hospital,for two weeks…one thing I do remember is my Mom and sister taking me in the wheelchair to the cafeteria in the hospital and after 5 minutes my heart was pounding from anxiety and wanting to get the hell out of there, too many people and tooooooo much noise.
I also remember not being able to sleep in a regular bed in the hotel after being released, the lazy boy chair was my best friend!!!
Life is great after transplant!!!!
Everything you said described me, except the makeup and girly stuff. lol
I had my transplant on August 31, 2015. I often wonder if i will ever feel good again.
What meds did you end having to take? I am just trying to get an idea..
Thank you.
Hi there! This Dee, Karen is away until Tuesday. I know she was taking 80 pills a day at first, lots of steroids and antibiotics as well as anti rejection drugs. Over time the steroids have been reduced. One thing I know is that she had a lot of back pain. The doctor said this was normal because her stomach muscles were cut so her back had to do all of the work. I hope you will write again Tuesday evening and I will point out your question. Her transplant was April 13th. I know she has worked hard to recover but it takes time. At least six months to a year. Take care. Dee
This is crazy. Back pain, neck pain. She was describing me…lol
Thank you. I really pick her mind. We are all supposed to pass this on. She took the lead. What a cool woman.
Do you live in tulsa?
Hi there, this is Dee, Karen is away right now, she is doing good works. I’m sorry I can’t confirm or deny where she lives. That would not be safe for her. Thanks for your interest
Hi Karen, “Coming Home After My Liver Transplant” post is really good. You really great. Thanks for sharing your experience.
I’m so glad that you found it helpful. If you need anything, please let me know. God bless you.
xo Karen
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