It’s been a wee bit over 2 years since the anniversary of our living liver transplant at USCF. My cousin, and recipient, is still in better physical shape than I am. However, I have a 10 month old baby to show for my time post surgery. So I still feel pretty good about my physical progress. I’m committed to writing for other potential donors our there. So here is what life 2+ years after liver donation is like for me.
I think the scar looks great! I think it’s done fading at this point.
The linea nigra (dark pregnancy line) is also fading. You can see it when it was a lot darker in my post on Baby After Transplant (see sidebar links). I’m not sad to see the linea nigra fade away completely, so I no longer see the mismatched line.
Postpartum, my stomach skin is doing great too. The scar and skin stretched a lot this past year and I wasn’t sure how it’d all “come back together”. Really happy with the aftermath.
The sort of lump above my belly button (the dark area of skin that crosses below the incision scar) is pretty much the same as it was after the surgery swelling went down.
So yeah, I’m guessing even if I got real lean, I’d always have a bit of a lump there. Not worried about it.
Underneath the skin is still a weak core because…I had a second baby and I’ve been lazy. Yes, I will own my poor commitment to my physical therapy exercises. I’ve been prioritizing other things and hope to find a way to incorporate running and fitness back into my life in a reasonable way.
My main symptoms are a locked and achey lower back/lumbar and tight hip flexors. I DO know the exercises and stretches I need to do. I just need to do them. My body is not in as bad of shape as after my first pregnancy, but I’ve taken longer to get with the program.
Two months before the 2 year mark, UCSF messaged me to ask that I fill out a health questionnaire, get my lab tests done, and see my primary care physician.
The questionnaire was pretty short and basic. The labs I got done at a local LabCorps facility. And…I keep forgetting to schedule an appointment with my doctor. Ugh. Which reminds me I’m also due for a teeth cleaning. Whew.
So, I’m guessing I haven’t gotten the results of my lab work because UCSF is still waiting to get my check-up information from my physician. I’m actually going to follow up with them on Monday just to be sure they got the labs.
When potential donors message me, a lot of times they simply want to know if my life was able to continue on “as planned” after recovery. I’d say, pretty much. I don’t really question if the surgery is impacting me anymore; as in…if it is preventing me from being as active as I want or eating what I want.
I donated in Sept 2017.
I got pregnant around June 2018.
Had our second son Feb 2019.
And now we’re making plans for 2020.
I enjoy talking with my cousin on the phone at least once a week. He’s at the gym pretty much daily and loving life more now that Baby Yoda is in it. This year, he insisted it was time to introduce the boys to all things Star Wars, so Christmas will include some excellent lego star wars sets!
Sometimes, when you do something really big, it shakes your whole life up. Maybe some things that were “stuck” fall off you. Maybe some stuff buried deep shifts toward the surface.
I definitely believe going through the liver donation process made me reflect on my life and brought me to a deeper self-awareness that before. Also, the circumstances with my relatives surrounding the liver donation started a domino effect. Things were stressful. People showed their colors.
For me, realized how much of my own healing I need to do in other areas of life; namely in understanding my own adoption story and racial identity. I have had to do a lot of self-reflection, learning and writing and processing over wounds I didn’t know I had.
Maybe in some ways, deciding to let go of my plans for my life in order to become a donor helped me realize there were other things I could let go of as well; like certain toxic relationships or problematic beliefs I had held. My faith was strengthened through the process of the transplant and from that place of assurance in God, I was able to confront scarier things. And so, the growth and healing work continues.
It’s been 21 months since our living liver donor transplant and my cousin is living his best life hitting the gym, reading books, and posting hilarious nonsense on Facebook. Meanwhile, I am approaching 5 months postpartum and figured I should post an update. What was it like having a baby after a liver donation?
Everyone’s body is different. If you’re a potential donor, keep that in mind. I’ve shared my donor journey here because I know I had questions before I donated. I know how difficult it was to find stories of other people’s experiences and long term recovery; especially stories that revealed the details I was curious about.
Therefore, my experience should not be taken as a description of what you could or should expect if you donate. This is just my personal experience.
While recovering from my first pregnancy, I learned that my body’s pelvic and abdominal strength was difficult to get back. I learned that I would struggle with constipation, ear and skin infections, and that the weight loss/ joint re-tightening took 4 or 5 months to kick in.
So it’s no surprise that after the transplant I experienced a lot of similar things. I knew to get in to see a Physical Therapist. I knew to take stool softeners. I had prescription ear drops to prevent ear infection, but I could not prevent that recurring skin rash situation on my abdomen. That stopped when I got pregnant, though. Not sure why. Hormone changes?
4.5 Month Old Baby at 21 Months Since Transplant
This was my second pregnancy and birth. So I was prepared for these same symptoms. I experienced them all again (but prevented most from getting really bad). Now, at 4.5 months out since I gave birth, I have my skin rash and poo situations under control. Yay!
I am still going to Physical Therapy because I need the accountability and motivation to actually do my exercises and get better. And it is getting better.
My 3 year old doing exercises with me! Haha.
I HIGHLY RECOMMEND physical therapy postpartum and after abdominal surgery. What I have learned about my body through these past few years has been incredible. The human body is capable of some amazing things.
In the later stages, I had different aches and pains this time around. My ribs were one of the worst. It reminded me of the pain I felt after surgery where they had lifted my ribs up. However, I’ve also read it’s common for some women to have lower rib pain during pregnancy, especially when in certain positions (usually bad posture). Finding a comfortable position for sleep was easiest with the giant pregnancy pillow. So if you’re pregnant, invest and be blessed.
Occasionally my transplant scar tissue would feel kind of “catchy” as my stomach grew, but it wasn’t painful. I’d say uncomfortable. A little massaging would usually help and that was that.
I definitely wondered, a lot, if my body was going to be able to do and provide everything that baby needed. Was labor going to be more difficult? Was I not as strong as the first time? I won’t say I worried, but I had a few moments where I wondered uneasily.
Yet all my prenatal visits were just fine. Baby was healthy. I gained about the same amount of weight as I did with the first. There were a lot of minor differences between first and second kid, but that’s pretty normal. No pregnancy is ever exactly the same anyway.
Just like with our first, I had a spontaneous vaginal delivery. This time, though, baby came out faster. Which we were prepared for!
To be honest, the worst part was 1) I apparently had the flu but my symptoms hadn’t gotten bad yet and 2) the nurses couldn’t get my IV in or find the baby’s position with their ultrasound equipment. As far as my body’s ability to give birth…everything else went pretty much as expected.
SKIP THIS NEXT PART IF YOU DON’T NEED THE DETAILS
SO, with Baby #1, we had no idea what we were doing. We got to the hospital with about an hour to go before delivery. It was about 5.75 hours from first contraction to baby #1 in my arms, when all was said and done.
With baby #2 we didn’t mess around. I got that first “This is different” contraction at 1:52 am. After the third, at 2:15, I got the husband up and we started getting everyone ready. We dropped the boys (our nephew who lives with us and our toddler) at a friend’s house at 3 am and headed for the hospital.
I was 5-6cm dilated when we arrived so they admitted me to a birthing suite. The contractions were painful but not jump-out-of-my-skin painful. I was walking myself around.
The nurses tried three times to get an IV. Blood was spilled down my arm. I won’t lie. I still get a little bit ‘o the heebie jeebies over the IV. I still remember the transplant hospitalization and all the things I was plugged into that made me feel claustrophobic.
Then the nurses tried to make sure baby’s head was down by digging into my pelvis with an ultrasound wand. I was having contractions this entire time, btw. They could not find him, they said. I was a tiny bit annoyed, especially when the doctor showed up and it took her all of 3 seconds to find him. Ah well.
We’d been at the hospital for about an hour when I was fully dilated and effaced. Just waiting for the water to break. So they offered to make that happen so we could get this show on the road. I gave the go ahead. Then the longest poker needle thing I’ve ever seen in my life was handed to my doctor so she could break my water. I wish I hadn’t seen that needle.
At 4:07 the doctor broke my water.
With Baby #1, I remember my pain as definitely getting to a 10 out of 10. The contractions I was feeling with Baby #2 felt like a 7, comparatively. I felt fully in control and able to be present through the pain.
At 4:21 our little guy was born!
Seriously, just a few contractions later and it was all over. One contraction helped me remember how to push productively. Two contractions to crown. Three contractions for his head to come out and I still had enough time to push out his body. Boom. Done. It was crazy.
You know that feeling when you get something WAY better than what you were expecting and wonder if you’re going to get ‘caught’? So you’re kind of unsure if you should start celebrating because what if fate suddenly realizes that no, you weren’t supposed to have it that good, and corrects the error? You ever have that feeling?
That’s what I felt after he was born. He was 7 lbs, 18.5 inches.
It was 2.5 hours from start to finish. It wasn’t as painful as I was expecting. He was healthy and perfect. I got some pitocin, as pre-planned, to help reduce the bleeding.
Kind of. Later that afternoon, I was feeling like my immune system was crashing. So they decided to test me for the flu. Positive. Guess I wasn’t the first woman to give birth with the flu recently.
This is me trying not to spread the flu to my newborn. He’s gonna think his mother has no nose or mouth. My symptoms are pretty much gone but it’s not even been a week yet so I’d rather stay cautious. Meanwhile the other #postpartum side effects are kicking in. I’m so thankful this little guy is letting us get some sleep by being chill in his crib. Back up to his birth weight too!
They started me on Tamiflu and I had to wear a face mask for the first two weeks when I held and nursed the baby. We also had to get the rest of the family on Tamiflu and wearing masks if they held him, just in case. I’m pretty sure our baby thought his family didn’t have a nose or mouth. Thankfully he won’t remember any of that.
Like I said in the beginning, I knew to expect the “typical” (for me) recovery issues: constipation, ear infection, skin rash, etc. There was also the typical postpartum feels: contractions when nursing as my uterus shrunk, thankfulness for the peri bottle, etcetera.
What about that scar and the recovery of my previously cut open and now thoroughly stretched abdomen?
So, my pregnancy linea nigra showed me that my transplant stomach-stitch-up wasn’t perfectly centered! See where it is above and below the scar? My stomach looks like a weird balancing sculpture.
In the first month or so, right around my incision, the skin/scar tissue certainly felt sticky and uncomfortable in a few spots. So I’d massage it as I had been doing. At this point I don’t feel that anymore. I will say, I still don’t have full skin sensation around my scar and belly button maybe never will. I’m used to it though.
On the right side of my abdomen, below the scar, I occasionally get the feeling that the tissue or maybe even muscle is burn-y or cramp-y. It’s hard to describe. It rarely happens. When it does I’m always like…hmm, this is still happening? Neither my doctor or PT seems concerned. As my organs and nerves and muscle and tissue settle back into non-pregnancy configuration, it seems likely some things would feel odd now and again.
I got pregnant about 8 months after the liver donation. Now we have this guy!
My primary concerns now are rebuilding pelvic floor strength (although I don’t have the leaking issues like I did after pregnancy #1) and making sure my entire core gets back to supporting my upper body like it should.
My lumbar spine isn’t flexing normally. When I bend forward, my lower back doesn’t flex as far as it should, causing some pain and limiting my range of motion. This happened after pregnancy #1 also. So far, it doesn’t seem like the transplant surgery has made that any worse. I just need to be good about my PT exercises and my posture.
In some ways it is easier to understand how the liver transplant worked than how pregnancy and birth work. I’m so thankful for this body of mine. I have two little boys and one full grown cousin that I cannot imagine life without.
I’ve heard from a few potential donors who are curious about the pregnancy and birth after transplant. Please feel free to send me a message if you have specific questions I didn’t address here.
I know that transplant centers are gathering data on living donors who go on to have children. Turns out, a good amount of living donors are women of child-bearing age. So there should be some better and more official data on that in the future. Ask your transplant coordinator if they have updated info.
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!
One year ago this Saturday my cousin and I went into separate operating rooms and came out, several hours later, with two halves of the same liver. When I think about it, it still seems a little “weird science” to me. Did that really happen? Modern medicine can certainly be miraculous.
So, where are we now? How is my cousin doing? How am I? There isn’t a lot of detailed, personal stories out there about the 1 year post-transplant mark. Sharing will hopefully continue to help others with their decision to donate.
First, I’ll update you on my cousin. With his permission, I’m taking a moment to brag on him. Last spring, UCSF contacted him and basically said,
“So hey…we already know all about your body and we know you’re a bone marrow match for an 11 year old cancer patient. Want to donate?”
And my cousin was like, “Hell yeah!”[Not an exact transcript of that conversation, btw.]
That young lady is now doing great and back at school this fall living her life again. I am so proud of my cousin and so happy for that 11 year old!
It is amazing to me how things in life come full circle sometimes.
In the beginning of this journey, I shared how fundraising for the Leukemia & Lymphoma Society via Team In Training led to joining Be The Match, the Bone Marrow Registry. That was the first context in which I thought about being a donor of any kind. I knew then I’d be honored and eager to do that if I could.
While I ended up being a different kind of donor, in the end, saving my cousin’s life enabled him to become a bone marrow match-made-in-heaven, saving a young girl’s life.
So yes, my cousin is a gym rat. Before he got sick he was super fit, doing obstacle course races and all kinds of nonsense like that. With health on his side, he is checking into the gym on the reg (I see it on Facebook) and guilting his friends into joining him.
In fact, he’s doing more workouts per week than I am. GAH! Once I’m done growing a child and back in shape myself, we have plans to do some obstacle course races together. Team Liver Twins!
FUN FACT: My cousin shares my DNA now!
You’d think we would anyway, but I am actually adopted and we are not blood relatives. However, some of my DNA, via my liver, has now “chimera-ed” it’s way into his genetic make up. [Insert evil laughter here.]
My cousin’s results show that his new liver is operating perfectly. No levels are too high or too low. They keep reducing his anti-rejection meds because he doesn’t need them. He is definitely a feel-good success story for the UCSF transplant center.
My lab results are also good. Normal. These are the things my 1 year blood panels tested for.
In case you really want to know….
Did you catch that comment above? I’m 19 weeks pregnant! In 2 weeks we will find out if we’re having a boy or a girl. We were about 8 months post-transplant when we got pregnant. The guideline given was that we wait at least 6 months before getting pregnant to give my body time.
My belly is in the growth phase and I’m curious how my scar will stretch? I’m having some typical pregnancy round ligament pain and I admit it kinda freaked me out at first.
It helped me a lot to read/hear other donor’s experiences when I was going through the donor selection process. It was hard to find a lot of comprehensive stories, though. That’s why I have shared the process on my blog and love that it continues to help others who want to donate.
I’ve consolidated the Frequently Asked Questions I’ve gotten from potential donors and put them in a post here.
Thanks to this blog and my instagram posts, I’ve been contacted by about 10 prospective living liver donors in the past 6 months, several of whom have actually been able to donate. I know having a donor mentor meant a huge deal to me and I love being able to help others who are in the process.
It’s been 6 months since my last update, so I’ll walk you through how recovery and life after transplant has been going since then.
Actually, I tried some short stroller jogging not long after my 3 month update. By the 4 month mark (in January) I was back to my weekly 3-4 mile run/walks with my group. Then I added Zumba and our local co-ed indoor volleyball league.
My body felt capable but I was still a little over-aware of my abdomen, if that makes sense? When I’d do some “sprinting” at the end of the run I was found my mind mentally searching, anticipating a feeling that something wasn’t right. Ready to stop right away if something felt painful. Nothing ever did, though.
I went back to Physical Therapy for a few weeks to recalibrate my body awareness. Prior to my first pregnancy, I’d learned over time what it felt when I had “good form” while lifting or running. After a few years of coaching feedback, I could sense if my hips were tilted too far forward or if I was over-extending my back.
After my first pregnancy, my core was naturally needing to rebuild strength and re-establish what good form felt like. After the transplant, it felt the same way to me. I was starting to feel the same kind of tightness in my right hip flexor, the lower back pain, and the spinal inflexibility, just like I’d felt postpartum.
I tried to stick with the program my physical therapist gave me. I tried to do my exercises religiously, tried to regularly massage the scar tissue, etc.
Some family came to live with us. We sold our house. Moved to 7 acres of wilderness. I began to process my adoption trauma and wrestle with my mixed racial identity. God’s been exposing suppressed and hidden wounds. While I believe excavating wounds is necessary to heal, it’s still spiritually, mentally and emotionally painful.
So for a while I stopped running.
Stopped doing my PT exercises.
Stopped anything extra.
And it was good that I did.
The only weird thing since January has been this recurring rash on my stomach around the incision. Every month, usually around my menstrual cycle, the rash would flair up. I’d apply the clotrimazole I had gotten from UCSF when I had been readmitted. It’d go away after 4 days or so.
My last flair up was early May and I made an appointment with a dermatologist (for two weeks later). Of course it was gone by then but she said that now that she had seen me, when it comes back, they’ll squeeze me in priority. Okay. I figured the rash would come back around soon with my next cycle. Which actually hasn’t happened yet so…we’ll see if that means something….
I had to get a physical and a blood draw at the 6 month mark. I was able to do that locally. No trip to UCSF required.
At my cousin’s check up at UCSF, his surgeon (Dr. Roberts) told him that he now shares some of my genetic makeup. I think that’s hilarious. My adopted cousin now has some of my DNA.
My healing process continues. At this point I’m working on massaging scar tissue and rebuilding core strength. Definitely having lower back pain due to core weakness. So no weight lifting for exercise yet.
My skin still gets rashes off and on. There is still noticeable numbness around the scar as well. However, I can run and pretty much all other aspects of life are back to normal. We could even start planning to have another kiddo….hmm.
The superficial skin layer around my incision are still a little numb. Mostly below the incision line around the belly button. It kind of weirds me out a bit, I won’t lie.
In regards to not having a gallbladder anymore, I am eating dairy and fatty foods with few to no issues. If I do have some digestion issues, it feels like an unrelenting cramp in my lower right abdomen which is super annoying. So that’s not bad just different than before.
I’m on day 4 of a daily mile run + core work. I’m only committing to one mile a day for the first week of #startingoveragain and I go out somewhat begrudgingly but whatever. I’m doing it. It’s helping. Also softball season has started. More activity is good.
But then I’ll see my scar and be like, Oh yeah! Or I’ll see my cousin post something snarky on Facebook and think…dammit I’m glad he’s alive and feeling feisty. Or someone from church will know me as the “liver girl”. Or someone will ask me what it was like to donate a kidney (haha).
I guess what I’m trying to say is life and self-perception has normalized. I no longer think of daily modifications to my diet or physical activity because of the transplant. My cousin is doing so well I’m no longer wondering what his latest test results will reveal. We just keep celebrating each new month’s liver-sharing-anniversary.