4 Years After Transplant Donation

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2021-09-12

Oh man, it’s been four years. That’s a bit wild. The surgery feels like a distant memory, until I read through my posts and then it all comes back. Those currently researching if they want to donate or not may want to know what it’s (health, life, etc) like 4 years after donating. So here are my updates.

The one lasting side effect.

Aside from the scar itself and the slight rippling of skin around it, the only last side-effect I’m aware of is the numbness of my skin around the center of my belly where the scar is. Those nerve-endings just never quite got back to full sensation afterward. Maybe it would’ve helped if I’d been better about massaging the area during recovery to break up scar tissue. Maybe some of that it to be expected when your abdominal wall is cut through.

It’s true, I’m not as physically fit….

Several people have wanted to know if I was able to go back to “normal”. Like, could I still run and lift like I used to and feel like nothing ever happened. The answer to that is…probably?

I didn’t go back to my pre-surgery fitness levels but I don’t think had to do with the transplant at all. I think that had more to do with life circumstances. Two months after the transplant, we added a child to our house. Five months after, my niece came to live with us briefly as well. So transitioning to a toddler, teen and twenty-something in the house was hard. I put some of my self-care on the back burner.

Then, about eight months after, I got pregnant with our second and we moved to our beautiful home in the forest. My abdominal muscles stretched as the baby grew. I continued to confront personal issues related to my adoption which you can read about here. I should have done better with pre-natal exercises but, again, life.

I began the pandemic of 2020 with a lot of in-home stress and relational pain. Between anti-asian hate, my own adoption related trauma, and increasing divides from family and church, I had my first ever panic-attack that March. I started seeing a therapist, over the phone, but I’ve felt like I’m in survival mode ever since.

So I’ve given myself grace in the area of physical fitness. As long as I’m motivated to eat, I don’t stress over the extra treats that make it into my mouth. Occasionally I’ll run and feel like, yeah, I’m out of shape, but my body is capable. I know this is a difficult life season. But I’m confident I’ll find my way back to those things when the time is right and that my body will be able.

My cousin, however, is in tip top shape.

Here he is at his home gym.

Randy works out almost daily. He’s tapped into my former-fitness-trainer knowledge database a few times as he’s tried to perfect his workout routines. Since he’s so damn healthy, they’ve reduced the medications he needs to take. Dr. Ascher has pronounced him a model recipient and sends him people to mentor as recipients.

But wait, there’s more!

Since getting his health back, he has also:

  • Donated bone marrow, saving an 11 yr old leukemia patient
  • Rescued a kitten from the streets and now she’s fancy
  • Taken care of his grandmother as her health declines
  • Even handling medical stuff and selling her home
  • Started law school
  • Been making $$$ selling amazing LEGO build designs
  • Been giving me a hard time about wearing coveralls

Yes. I like to brag on him.

But if we’re being real real, none of these things are as important as the fact that he is alive and he living his life.

He’s still with us. That’s all we wanted. That’s the best-case scenario.

What would we change?

I asked my cousin if there is anything he’d change about the transplant experience. He said,

“No, it was actually pretty smooth aside from the nearly dying part.”

Which reminds me, he had a surgeon (not from UCSF) who completely butchered his intestines and contributed to the issues that were causing him to bleed out and nearly die. In the month between our cancelled transplant and the actual transplant, Randy had to have a about 60 blood transfusions. That’s like two PER DAY.

When UCSF opened him up for the transplant, they saw what that other surgeon had done. They paused everything to document because they new it was bad. I honestly think that whack surgeon just figured Randy was a lost cause and going to die anyway. There were many things he could’ve done to prevent or reduce suffering and didn’t.

Of course, these weren’t necessarily things within our control. I think…yeah, we feel pretty good about the choices we made and what stemmed from that.

Heading toward year 5.

I anticipate writing another update for the 5 year mark. By then, maybe I’ll finally have whipped this body back into shape. By then, maybe COVID will be under control enough to allow my cousin and I to actually do an obstacle course race together! Who knows?!

Randy says he’ll take an abdominal scar update photo for year 5 as well. Maybe we’ll even take one side-by-side. Then after that, I may stop the yearly updates. I’ll always make myself available for people who have questions. I hope this series of blog posts will always be helpful for potential donors.

3 Years Later

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2021-09-12

What is there to say, really? As I write this, I’m always thinking about those who are just now starting their journey toward donating. At that point, we do really want to know what the long term outcomes are and feel reassured.

Well, for me it’s been 3 years and it does seem like my life has been able to proceed as normal, at least physically. I definitely think that the experience of donation, all through the planning and on to the recovery, changed some things about how I see life and what kind of decisions we make as a family.

I learned to create space.

Choosing to donate meant kind of wiping the slate of my future plans. As I prepared I had to change a lot of my plans and then I had to dedicate time to recovery. I opened up my schedule, so to say, to be available to help someone else.

And right after I went home from the hospital, right as I was just beginning to formulate a plan for my future again, another need in my extended family came up. For various reasons which I won’t get into, my nephew needed a place to live. About 2 months after the transplant, he came to live with us.

Since I didn’t have any plans it wasn’t hard to proceed with shaping my new plans to allow us to meet this need. I’d already created space in my life and I realized I didn’t need to just fill up that space with self-focused endeavors. It was good to have a lot of margin to allow me to actively care for others in more time-consuming way.

I learned to ask for help.

I feel like there is a certain level of help I’m willing to ask for and accept. Post-transplant, some of the barriers came down and I recognized that asking for a little bit more help as ok. It didn’t make me a mooch or a lazy person. In fact, it meant I connected more deeply with some people than I had before.

Sometimes, the resistance toward asking for help is a resistance against not being in control. Three afters after the transplant, I’m able to let go a lot easier. Especially with things that I couldn’t really control in the first place, but was still tempted to try.

Nothing is the same.

I realize I’m being somewhat vague, but there are details about my life you just don’t want to hear. Trust me. I think the valuable takeaway, regarding this transplant, is that the experience was life-changing. The physical aspect of it was definitely challenging, but my body handled it well and recovered well.

The other stuff, the relational stuff, has all changed. On the upside, I speak to my liver twin all the time. He calls. We text each other silly memes. We send each other gifts. He’s like a brother.

On the rollercoaster side (because it went down and then up again), the experience of donating created opportunities to see the issues that existed in other relationships. That forced me to explore some things about my life that I hadn’t excavated; namely my adoption and my multiracial identity. And in the world of ever-widening cultural divides, that led to me making big changes as to who I allow to have access to my life.

So in that regard, the past 3 years have been hard. For sure. But I believe it has been healing, overall, and I wouldn’t change it.

2 Years Later

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2021-07-11

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.

The Scar & Skin

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.

Health & Fitness

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.

Final Labs & Check-Up

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.

All The Little Joys

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!

How I’ve changed since the transplant.

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.

Baby After Transplant

by , on
2021-07-11

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?

My Experience Is Distinctly Mine

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.

Learning About My Body

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?

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.

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.

Pregnancy Post Transplant

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.

Labor Post Transplant

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.

T.M.I. ALERT

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.

Breaking The Water

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.

So Labor Was Weird Fast.

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.

Well, the other shoe did eventually drop.

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.

Postpartum Abdominal Stuff

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.

Any questions?

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.

FAQs from Potential Donors

by , on
2021-07-11

I’ve had over 25 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.

FAQs From Potential Liver Donors

[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.]

HOW WAS HAVING A BABY AFTER?

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:

Having a Baby After A Liver Donation

HOW DO YOU DEAL 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 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 couldn’t push the fears and dark thoughts aside.

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:

  • 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 if this happened. I could be angry. I could get depressed. I could find other hobbies. Or 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. If any of these fears came true, life might be more difficult, but after sitting with it, I realized it wouldn’t be the end of the world. There would still be love and life on the other side.

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. 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.

  • 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 would still be a self-focused motivation. That 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:

  1. “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.
  2. 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 in case the worst happened. Writing that also helped me process.

Yes, I still thought about dying even in pre-op. 

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. 

I tried to help my family deal.

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:

  • 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, adoptive mom and close friends.
  • I wrote them 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. It gave them something to do.
  • I made the travel arrangements for everyone so they didn’t have to think about that.
  • I made sure my husband and mom knew where to find food and how to get around UCSF. I felt better knowing they had their bearings.
  • I asked friends to invite my husband over for dinner while I was away from home during the month after the transplant. It felt good to know others would be supporting him.

WHAT IS IT REALLY LIKE IN THE HOSPITAL?

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.

  • 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.

By Tuesday we had both earned our shirts!

It’s not all bad, though.

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:

  • Knowing that you’ve done your part to help someone live brings peace.
  • Knowing 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. Please reference the list of posts on the left sidebar of this page.

The Scar Progression

From Top Left to Bottom Right:

  1. Freshly glued together, still in ICU.
  2. 6 days later, the bloating has set in.
  3. 18 days later, the evil rash in full glory.
  4. 22 days later, rash starting to subside.
  5. 5 week mark sans bloating.
  6. 3 month mark, still reddish.
  7. 9 month mark, redness has faded
  8. 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. 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.

How soon were you able to run again?
Get back to work? Etc.

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.

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!