I’ve had over 20 potential liver donors find my posts and contact me about my experience. How is the recovery process? What does your scar look like now? There aren’t a lot of detailed, personal stories out there about the process for living liver donors. Which is why I started sharing my experience when I knew I was approved to be a donor for my cousin in 2017.
REMEMBER: The best information for you will come directly from the transplant center that your recipient is working with. While my experience is useful to give you an idea of one possible outcome, it is still just my experience. You can’t take it as anything more than that. I’m not a doctor or surgeon or even an expert. I’m just happy to help people think through their plans and feelings about becoming a donor.
We all have distinct health backgrounds and ways of dealing with stress. My “answers” to FAQs may not be useful or helpful for everyone who is considering becoming a donor. That is my disclaimer. If this is helpful to you, I’m glad. If it’s not quite the perspective you need then keep searching and looking for a donor mentor who can help you find the answers you need to make your best decision.
[Another note. I have gotten a lot of questions about how a living liver transplant works. But usually potential donors already know this from their own research. This post doesn’t deal with any of those medical questions that you can find through a google search or from the material your transplant center can provide you with.]
A lot of potential donors are women of child-bearing age. This is a question many want to know; can I have a baby after donating an organ? Will being a living donor increase my chances of pregnancy complications?
Well, the honest truth is that I have no idea what your body can or can’t do. I can only tell you that I was able to have a normal pregnancy and delivery after donating a portion of my liver. At 1 year post transplant, I was 19 weeks pregnant. I wrote about the whole pregnancy and delivery in this post:
What if I die or have life-long complications?
What about my family/loved ones? Am I being selfish?
Is it a bad sign I’m even having these thoughts?
How do you handle these fears? Etc.
In my opinion, these thoughts and fears are a normal reaction to thinking about becoming a living organ donor. My response to this line of questioning usually starts with a reminder that my way of handling this may not be what you need. However, if hearing my process helps you, that is great! Also, if you have a faith of any kind you can lean on, incorporate that!
I had to face them down. I had to chew on and digest them until I found a sense of peace and acceptance of my fate, whatever it might be. I had to ask myself why I was afraid…over and over again…until I drilled down to where each fear was rooted. Many times fears were rooted in a lie that I believed. So I had to work on reshaping my thoughts toward the truths that I believed in.
Some of my darker thoughts:
At UCSF: My kiddo being entertained by my cousin’s boyfriend during our surgery.
I don’t know that there are any motivations that are more “right” than others. There certainly are healthy and unhealthy motivations. If my primary motivation was an unhealthy one, it would not be wise to proceed.
An unhealthy motivation could lead to regretting my donation if things didn’t work out perfectly. It could lead to resentment toward my cousin, and/or unnecessary burdens on my family. An unhealthy motivation feeds fears and doubts.
Here are some questions I asked myself to weed out the unhealthy motivations and focus energy on the healthy motivations.
The only motivation that mattered to me was love. When someone we love is in harm’s way, we are capable of amazing feats of strength and courage. Here are two verses in the Bible that I kept going back to:
I left them on my computer and told my husband where to find them, just in case. That helped me feel like I had said what I needed to say in case the worst happened. Writing that also helped me process.
I won’t pretend I wasn’t nervous after I’d done all this processing work. Even up until the last hour in pre-op the thought crossed my mind that this might be it. And I felt some jitters. But I was quickly able to remind myself of all the inner work I’d done and no, I wasn’t afraid anymore. The thought made me sad, but I was able to say, “Well…then this is it and I can accept that.” Getting there was a hard fought emotional and spiritual journey that lasted months.
A lot of my fears were actually for my family, not me. It was going to be hard for my husband and adoptive parents to watch me do this. They had to wait for 7 hours to hear if I was okay or not. They were worried and scared for me. They had their own fears to deal with. I had to be mindful of that. So here are some things I did:
Even if you have no strong fears per say, visualizing what the hospital experience will be like can help you mentally prepare. If you’ve never spent time in a hospital as a patient, it can be hard to imagine. A few people have asked about this and obviously it is different for everyone based on what hospital they will be at.
These are some of the sights, sounds, tastes, and feelings I remember about my experience in the hospital. I share these things to just paint a picture.
By Tuesday we had both earned our shirts!
While the stuff I just mentioned deserves some mental preparation, there are a lot of good and positive things that make the hospital stay more than tolerable:
That being said, I’m still a little skin-crawly about going into a hospital room again. Just imagining the IV during and catheter after labor and delivery next February and makes me cringe a little.
Now that it has been “X months”, what are your side effects?
What is recovery like? Is life back to normal?
What about your scar?
There isn’t a lot of information on the donor recovery experience past the first couple months. At each new stage of my recovery, potential donors are more and more curious if things are still good or not?
I tried to share about the recovery process in several blog posts in regular intervals. Please reference the list of posts on the left sidebar of this page.
Her are progression pics of my scar because it’s crazy.
From Top Left to Bottom Right:
The only long term side effect I really had was a recurring rash on my abdomen, about once a month, for nearly 7 months. But when I got pregnant that stopped. I can’t say that was a direct result of the transplant. It might have been more about my weakened immune system during recovery and my body’s natural tendency to get skin infections when I’m compromised and hormones are fluctuating.
The skin around my belly button is still a little numb. The nerve endings there may never fully turn back on. I thought it was super weird for a long time. I’m starting to get used to that, though.
This really depends on your body and your surgeon’s guidelines.
My restrictions were not lifting more than 10 lbs or doing any high impact activity for 8 weeks. I am a stay-at-home mom so I didn’t have a job to go back too, but the guidelines given are usually about two weeks, give or take, based on the type if work you do. Obviously if your job is very physically demanding, it may take longer to be able to return to work safely.
I love running but I was aware my body was going to need extra time. So while I waited a few months to really do more than a short jog, I know other donors were able to get back to running earlier. If you know your body, you will know what you can handle and when.
I was told that being an organ donor can be considered a pre-existing condition and make it difficult to get insurance or to have certain things covered by your insurance. That has not been my experience, though. We already life and medical insurance before the transplant and I have not lost any coverage. Yet. My medical insurance company was notified of my transplant and did contact me a couple times asking how I was, if I needed anything, etc. That’s been about it.
Got other questions?
Send me an email at coachhenness [at] gmail.com!