So far I’ve had about 10 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.
It helped me a lot to read/hear other donor’s experiences when I was going through the selection process. I hope that sharing these FAQs will continue to help others with their decision to donate.
Of course you can always GO BACK TO THE FIRST POST and read through my donor process chronologically. It’s a bit of a time commitment, though.
FAQs From Potential Liver Donors
Before I get started, let me just remind you that I AM ONLY SHARING MY THOUGHTS. We all have distinct health backgrounds and ways of dealing with stress. My answers 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.
Oh, and this post doesn’t deal with questions about how a liver transplant works or any other medical things you can find through a google search or from the material your transplant center can provide you with.
DEALING WITH THE FEARS
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 covers these basic points:
First, MY way of handling this may not be what you need. However, if hearing my process helps you, that is great! So here it is.
Second, do you have a faith of any kind you can lean on? That helped me as you’ll see below.
To start, I couldn’t push these fears and thoughts aside.
I had to face them down 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, fighting the lies with truths along the way.
Some of my darker thoughts:
- What if I die and my 2 yr old grows up without me? What about my husband?
I let myself grieve over these potential worst-case scenarios. I cried and prayed through these things several times. Eventually I came to a place of trusting that my loved ones would be taken care of even in my absence. No, that would not be my first or even 1000th choice, but in the end, I am not the glue that holds everyone in my world together. God can provide for my family with or without me and He loves them more than I do.
- What if I had lifelong complications that change my ability to be a wife/mom/athlete like I am used to and/or negatively impact our financial situation?
Again, I imagined different choices I could make. I could be angry. I could get depressed. I could find other hobbies. I could make the best of things. Thinking through the scenarios, I realized that many mothers with poor health or different abilities are still rockstar moms, showing their kids that their physical limitations do not define them. Life might be more difficult, but I knew that I could adapt.
- What if I die and my 2 yr old grows up without me? What about my husband?
I had to check my motivations.
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, resentment toward my cousin, and/or unnecessary burdens on my family.
Here are some questions I asked myself to weed out the unhealthy motivations and focus on energy on the healthy motivations.
- Was I just trying to be a hero so others would think I was amazing? If so, going through all this just to impress others was not a good reason to go forward. That reason alone would not sustain me through the difficulty of recovery or if something went wrong. Eventually the WOW factor will fade and people will forget anyway and stop being impressed.
- Was I trying to prove something to myself? If so, that would be a self-focused motivation. Using organ donation to boost my self-worth would only be a temporary boost anyway. If I’m struggling with feeling good about myself, then I needed to deal with that in a healthier way.
- Was I trying to avoid personal guilt/shame over saying no? Putting myself and my family through all of this just because I didn’t want to feel bad about not doing it was still a self-focused motivation and could easily lead to resentment and regret in the end.
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:
- “There is no fear in love, but perfect love casts out fear.” 1 John 4:18. And here is a quote from Desiringgod.com: “Perfected love is the love of God expressing itself in our love to each other.” I know God loves my cousin more than I do. Plus, I’ve never regretted an act of love, even when things didn’t work out the way I had hoped. Love without expectation.
- “There is no greater love than to lay down one’s life for one’s friend.” John 15:13. My cousin’s life mattered. His immediate family’s suffering mattered. If love for them was my truest, deepest motivation, then that provided a strength and motivation more powerful than any fear or doubt I had
Yes, I wrote “in case I die” letters. 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, helped me process.
Yes, I still thought about dying even in pre-op. But 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.” I won’t lie. Getting there was a hard fought emotional and spiritual journey that lasted months.
I tried to help my family deal.
It was going to be hard for my husband and parents to watch me do this, to wait for 7 hours to hear if I was okay or not, to be worried and scared for me. I had to be mindful of that. So here are some things I did:
- I didn’t lay all my emotional fear-processing burdens on any one person. I mainly took it to God and journaled out prayers and thoughts.
- I spread out the verbal processing between my husband, mom and close friends.
- I wrote my husband and mother happy letters to read while I was in surgery.
- I asked them to write a letter to me while they waited so I would know what they were thinking and what was happening while I was out.
- I made the travel arrangements for everyone, booked the hotel, and made sure my husband and mom knew where to find food and how to get around UCSF.
- I asked friends to invite my husband over for dinner while I was away from home the month after the transplant.
WHAT IS IT REALLY LIKE IN THE HOSPITAL?
Even if you have no strong fears per say, visualizing what the hospital experience will really 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 and even who will be on shift while they’re there.
I actually wrote about this before [read it here], but I’ll just recap some of the sights, sounds, tastes, and feelings about my experience to paint a picture.
- Waking up in ICU can make you feel claustrophobic. You’re hooked up to a million machines, your vitals checked every 30 minutes, things beeping all over the place, and barely room for a nurse to turn around. I was there for just about 20 hours and was so, so glad to get to leave and be disconnected from some of the wires/needles.
- The hospital atmosphere can get wearisome. Bad lighting in the hallways. Stale air. The smell of the soap. Constant noise outside your door. The bland foods you are limited too. The mechanical bed which randomly inflates and deflates in different spots to prevent bed sores.
- Rest can be hard to come by. Vitals will need to be checked regularly and a blood draw which sometimes happens in the middle of the night. So if you did manage to fall asleep on the undulating bed, it won’t be long before you’re woken up for lab work or a meal delivery or a transplant team member coming to check on you.
- There are awkward medical things. There was an enema and some anal suppositories. I was at a teaching hospital so there were a few visits by a group of residents coming in and listening to the expert talk about you while they took notes. You are encouraged to get up and walk as much as you can, but you have to cart your IV pole around with you, even to the bathroom, and staying untangled is just a nuisance. In order to shower you have to have our IV unhooked and these crazy adhesive plastic patches to waterproof all your open ports. It’s a process.
It’s not all bad, though.
While all 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.
- Knowing that you’ve done your part to help someone live and that all the big stuff is behind you is a relief.
- You might get a private recovery room if you ask nicely.
- Your nurses and all the medical staff are so happy to see you. Unlike their other patients, you are a HEALTHY person who just did something amazing and generally has a healthy attitude. You are a breath of fresh air for them and they are happy to see you, help you, get to know you a bit, and relieved you are on their rotation.
- If you get visitors or flowers or cards, that’s all a lovely bonus.
- If/when you get to visit your recipient, those are special times you will treasure forever. The good feelings and support definitely carry you through.
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.
SIDE EFFECTS AND RECOVERY
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. Here are some links to those posts:
- 1st Check Up about 1 week after being discharged from the hospital.
- 1 Month-ish post transplant (and the rash story).
- 3 Months out and a video of the pokey suture.
- 6 & 9 Month updates kind of combined into one.
- 1 Year update with pics of my cousin’s scar!
And some progression pics of my scar because it’s crazy.
From Top Left to Bottom Right:
- Freshly glued together, still in ICU.
- 6 days later, the bloating has set in.
- 18 days later, the evil rash in full glory.
- 22 days later, rash starting to subside.
- 5 week mark sans bloating.
- 3 month mark, still reddish.
- 9 month mark, redness has faded
- 1 year and 19 weeks pregnant.
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. So I can’t say that was a direct result of the transplant so much as a result of a 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.
How soon were you able to run again?
Get back to work? Etc.
This really depends on your body and your surgeon’s guidelines.
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24 days post transplant – what exercises CAN I do? How about banded side steps? Or penguin walks. Or whatever you want to call them. I know my glute strength could use some improvement. It may be another month before I get back to running (notice the tank?) but little exercises like this will make it easier to start up again. 👍🏼
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.
Have you had trouble with Insurance?
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!