Going Back to Bed after Surgery
After the surgery, my transplant coordinators, friends, and family all conspired to make me rest. Then they got me all jacked up on steroids which made it totally impossible for me to sit still. It was quite a conundrum. In the end, they had to employ some crazy tactics to convince this girl that going back to bed after transplant is a good idea.
The smartest move they made was to call my bed The Nest. It is spoken with a sense of comfort and love. Speaking of love, I am a lover of bird’s nests. I have them all over the house and in my classroom. I’ve given them as gifts and take a lot of delight in placing my feather collection in them. They are an amazing blend of grass, twigs, dog hair, feathers, and pieces of paper. One year I found a snake skin woven into it! With no hand or fingers, the birds engineer this tiny and cozy place for their eggs to grow into maturity.
When Julie and Linda first referred to my bed as The Nest, it made me think of the fledgling Blue Jays in our yard at the farm. One spring day a few years back, I was standing under the pecan tree and a little blue ball of fluffy feathers dropped within inches of my feet! As he hopped and flopped around, I took pictures, dodged the flustered and angry parents, and called Joe. He assured me that this was a common occurrence with this species.
It upset me for days. I ran around the yard at night with my infrared flashlight trying to shoo the little guy into the barn so the coyotes, cats, or hawks wouldn’t get him. I dashed outside first thing in the morning and combed the pasture til I found him. I had to admire his pluck in thinking he was ready to fly. So bravely he jumped….. but too soon perhaps? He was not equipped to fly yet. The beautiful feathers were of no use to him. He simply was not strong enough. All he could do was hop and flop. And cry. His parents fed him several times a day and I was so glad to see him hungrily eat and gain strength.
Linda and Julie had feathered my nest as painstakingly as the baby Blue Jay’s parents had. It started with a mattress pad and really high thread count sheets. Across the head were four or five pillows including my own snuggy one and one from a transplant survivor who makes them for all of the liver transplant patients at Nazih Zuhdi. These are an absolute necessity for stuffing between your legs, behind your back, under your knees and also good to bury your face in when the steroids hit.
The really good pillow was the one that had gotten Linda through her transplant. It was one of those cushions with arms. Except she learned a trick and improvised by putting it upside down. You’ll have to see the pic above. See, it is not easy to lie down flat with staples in your stomach. So this pillow kept me semi-sitting up, but mostly lying down. It was perfect.
Settling me into The Nest could take up to 30 minutes those first few weeks. But once there, I was safe and comfortable. We had a glow-in-the-dark flashlight that looked like something Linda had picked up at a Stones concert. I ratted away some food like granola, organic fruit chews, and of course my box of wheat chex cereal along with some water to chug it down with. Sometimes I holed up with chips and hummus or salsa. I had 2 bottles of water and a little box of the of pain meds. When I quit taking them, they set an alarm and gave them to me to just keep me in The Nest. I finally learned the value of meds for sleep.
Underneath all of this was a plastic pad. I did not know how valuable this would be until the 2nd night there. I was lying on a disposable pad they got at the drug store, but it wasn’t quite enough. Linda knew that and had The Nest double padded. My doctors pulled my right drain tube the day after surgery. The one on my left came out 4 days later before I left the hospital. It was the one on the right that kept draining. Even with those gauze pads, it oozed everywhere. All Julie and Linda had to do was pull the pads and change my PJs and I was right back in bed.
Nests can be boring. My blood was pumping like a drum. My pulse had been kept at 65 bpm to prevent a varices bleed for years. Now my pulse was running 100+ bpm at times. My thoughts went faster than my brain. My mouth went faster than my thoughts. That is when they would encourage me to go to The Nest. Even in the middle of the day!
Every time I tried to go outside for a walk, Linda would say, “Go lay down.” Poor Louis and I never knew quite sure who she was talking to so we both went to The Nest. Me on the bed and Louis under it as my protector.
It seemed like a little much at first, especially given my state of mind. I am not an unreasonable person, but it may have appeared that way to the powers that be. See, I thought it seemed like a good idea to do yoga, wash dishes, and walk around the block 6 days post op. I was deep breathing to prevent pneumonia and it was just easier if I was walking, right? I had been training for this surgery for months. I was not used to laying in the bed….. nest…. Oh. Now I get it. I was like that little Blue Jay.
One evening I had watched my little guy hop up the steep bank of the pond dam. He headed toward some tall grass by the elm tree. He was too far from the barn. His parents agreed with my silent cry and protested loudly from the pecan tree. I said a prayer and walked slowly back to the house. The next morning, I couldn’t find him. I was mad at him for foolishly jumping from The Nest too soon.
Thanks to The Nest, and a fledgling Blue Jay, I learned the lesson about doing too much too soon after a transplant. I had worked hard and long to take care of my body. I had to learn how to stop the Olympic path to transplant. All I was responsible for was going to bed. I hope if you are post op or even if you are on treatment, you will learn how to rest in The Nest.
All my love at Nap Time and Always, xoxo Karen
12 thoughts on “Going Back to Bed after Transplant”
Good one and sooooooo true
Karen, I know all too well about doing to much post transplant. That’s why I said to you, that you need to take time to rest. You body needs to heal, and taking care of it post transplant will allow you to have that liver for many years to come. My first transplant was Dec 10th, and I got out of the hospital on Dec 15th or 16th..well you guessed it, I had Christmas shopping to do! So I over did it…ended up with a HAT, a blood clot in the Hepatic Artery! Had to have a redo. Please, please, slow down. there is plenty of time to rebuild your health…after all, you had a head start by being healthy to begin with!
Love you girl!
Emma
Dear Karen, I am so happy to see you writing. I loved this story. You are so right, you have to rest, it hasn’t been that long since you had surgery. Adding in the steroids has to be so hard. I think of you daily and hope you are improving every day.
The story of your nest was so beautiful. I hope they are reducing your steroids little by little. Hang in there.
All my love, D
Dee Ernst recently posted…Going Back to Bed after Transplant
Thank you God for Karen, bless her and keep her! Make her strong!
Karen, I am so happy to see you doing so well. As I have said before you are such an inspiration to me. My situation is a little different than yours. We started out the same…Hep C , cirrhosis and then HCC. I had no other extenuating problems though…no varices, HE, or any of that. I am now waiting for a transplant. The difference there is I have a live donor. I worry about this. She really wants to do this. I worry about something happening to her. She is young, but knows what she is getting into. She is an RN. I really would like an opportunity to talk with you about this whole transplant procedure. I think it is sometimes better to talk with someone who has been there, not just someone (transplant team) who has studied it. Is there any way for me to contact you?
Again, I am so excited about your whole journey. You certainly have proven yourself to be a Warrior. Please continue to heal and be an inspiration to all facing any liver disease. You have covered just about all facets of it. You are my hero and I thank you.
Kathleen (Boston)
Hi there Kathleen. I don’t know if you have read or not but Karen has many thoughts on transplants here on her blog. I can understand your concern about someone giving you part of their liver. The good part is that this person is a RN so she is well aware of what she is offering you. In addition to her medical knowledge she has probably done a lot of research about transplants. Did you know that her liver will regrow the part that is given to you? I know I am not phrasing this right, I hope you know my heart is in the right place even if my words are awkward. I think you are very blessed to know someone who would give you part of their liver. You will feel so much better after your transplant. If I were you I would try to be prepared to rest. Make some meals and freeze them ahead of time. As Karen said she had a hard time resting because the steroids made her a little speedy but she is doing really well. If you would like to contact her directly she has an email address on here where it says contact best friends. I will get it for you, back soon. Take care of yourself, Dee
Hey there, ok, Karen’s email address is ihelpc.com@gmail.com
You can write to her in private and ask anything you would like to know.
Before transplant Karen tried to gain some weight as she is a tiny little person and the doctor said she would lose weight. Then she also tried to start moving more to get in good shape before the surgery. Did you see the blog she wrote about the trampoline she bought?
Try to drink lots of water, cut out read meat, fried food, processed, etc to help your body recover as quickly as possible.
Tomorrow will be two months since Karen had her transplant. I am so proud of how well she is doing. She is my hero.
Dee
Hi Dee,
Thank you for replying. Things are moving pretty fast here. We think the transplant will be in July. My donor is an awesome young lady. She wants to do this so badly. She knows what she is getting into. I thank God for her every day.
I am so happy to see that Karen is doing so well. I wish I had had time to get to know her better before all this happened. She seems like an incredible lady…one I would love to be friends with.
Again thanks,
Kathleen
Good Morning Kathleen! Oh my gosh you are right July is just around the corner. I am praying that everything will go well for you and for your friend. What a great friend she must be to offer you part of her liver. Yesterday Karen shared a letter that she wrote to her donor’s family
It is a beautiful letter and she shared it with all of us in the hope it would help us to thank someone who helped us so much.
I am sure there is so much that you have to do before your transplant. Remember to rest, eat, walk a little if possible. Karen was told to try to gain some weight since they said she would lose some after surgery. Try to hydrate yourself before surgery. Gosh it must be so overwhelming. I know I would be overwhelmed
Hugs and prayers, Dee
Kathleen,
I am so thrilled for you. I hope this blog was helpful for your planning phase. You won’t have to deal with the waiting and that is good. Having your support in place is the best advice I can give. My daughter came this morning and we went to the pharmacy and doctor office. By the time we stopped at the beauty supply, I was glad it was not me driving!
But Let me tell you this: It’s not that bad. It is doable. You’re going to feel better immediately in many ways. It’s a mental game and you just hold on for the ride. Don’t allow yourself to get discouraged. You are getting ready to become a new person….
xoxo Karen:)
ps. Any specific questions? Just shoot. I’ll be looking for them ok?
Kathleen,
my email is ihelpc.com@gmail.com
Karen..wow, I didn’t know that you recently got transplanted. I will be praying for you. Laurie J. (MN)
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