Being a Living Organ Donor: My Journey and What I Learned
Some people choose to be organ donors in the event of their death. But what about those who choose to donate an organ while they’re still alive? And what about transplanting part of yourself to someone you hardly know?
When my college friend Heather reached out to say her friend Tiffany may be interested in sharing her story of being a living organ donor this year, I was interested and very curious.
Other than Heather’s Facebook posts about Tiffany’s living donor journey and the need for help with some of the expenses (all well-documented in Tiffany’s blog), I had no clue what goes into donating an organ while you’re alive, besides bravery and selflessness. After finding out about Tiffany’s experience and decision to donate, I know more about the process, but her bravery and selflessness stand out even more.
It started in February when Tiffany saw her aunt post a plea to Facebook about her cousin Randy needing a life-saving liver transplant. He wasn’t high enough on a list to receive a cadaver liver and was running out of time and options.
Tiffany, 33, talks more in her blog about what her cousin needed and what happened next:
They needed someone with Type O blood, between 18 and 65, and really healthy. They hadn’t found a match yet and this letter was a last-ditch effort.
If anyone was willing and able, then Step 1 would be filling out a health history questionnaire from the University of California San Francisco (UCSF).
What’s going through my mind?
First there was sorrow for my cousin’s situation. I had no idea he had been so sick for so long. Then there was surprise that I was a blood match and a feeling that I’d be a good candidate. I figured I should at least fill out the questionnaire, right?
The decision to act is often the most difficult step. I needed more information. I googled his diagnosis, looked him up on Facebook, and searched for living liver donor stories. Some stories were terrifying, some were heart-warming and magical. That’s the internet for you. I also called mom to see if she knew anything more about how my cousin was doing.
It’s worth noting that Tiffany had only met her cousin Randy once 8 years ago. It can be scary enough thinking of donating an organ to someone you know well, but Tiffany moved forward with conviction and on September 15 she gave part of her liver to her cousin.
It’s also worth noting Tiffany is the mom of a 16-month old, who would have been 9 months old when Tiffany’s living donor journey began. Tiffany is a running and fitness coach who has done several marathons, but this really brings the term “badass” to mind.
So what drove Tiffany’s decision to donate part of her liver? How did she prepare for being a living donor, what helped her get through it, and what happens now?
This is Tiffany’s story.
Did you ever think you would be a living organ donor?
I knew I'd be willing but never thought the opportunity would be there.
What influenced you to become a living organ donor for your cousin?
A lot of things. Primarily, my faith and the belief that I should be willing to lay down my life for another. By the time I heard about my cousin's situation, he had already run out of potential donors among friends and family closer to him. His window of opportunity was closing. I felt this was something I was meant to do and had peace about the outcome.
You wrote about how you or your husband could have gotten tested to see if you could be your cousin’s donor. Why did you choose to get tested first?
My cousin and my husband had not yet met in person. In searching our motives, we realized that my motivation was rooted in love for my cousin, while my husband's motivation was out of love for me and a desire to spare me from going through the process. While I love him for that, we both recognized it wasn't the right reason for him proceed. If I could be the donor, then it should be me.
How did you, your husband, and your family react to the possibility (and then reality) of you being a living organ donor?
My husband was supportive but he couldn't think too much about it until he came with me to the surgical consults. My family's reactions [were] mixed. Some thought it was amazing, some thought it was too risky, some questioned my motives (am I trying to be a savior?), some were cautiously kind about it. But when it came to it, everyone was willing to help however they could.
What fears and questions did you have going into the living donor process? Were those addressed?
Donor risks range from death to a minor incision infection. The UCSF transplant center did a good job of explaining the probability of those risks and answering questions. But then, I had to face my fears about those risks to get to a place where I could say "Even if ______ happens, I wouldn't regret my decision." Sometimes the bigger fears were about my cousin; would he make it to the transplant, through the transplant, would it be successful?
How did you prepare (mentally, physically and emotionally) to be a living donor?
Mentally, I researched living liver donor transplants. I watched a video on YouTube of a donor surgery, removing the liver. I found a donor mentor who'd gone through all this at UCSF 3 years ago and listened to his experience. I got a full picture from start to finish of what this process was like and visualized going through it, step by step. It's just like visualizing a goal race, seeing myself run each section of the course and handling each obstacles as I come to it.
Physically, I kept running and also saw a PT (physical therapist) for my mommy back pains. My postpartum core muscles still weren't firing the way they should. Knowing that my abdominal muscles were going to be bisected, I wanted to get my core as strong as it could be beforehand. Seeing a PT was the single best pre-transplant decision I made.
Emotionally, I did a lot of prayer and soul searching early on. By the time we arrived at UCSF for the actual surgery, though, I was so excited and so eager to do this. I'd dealt with my fears and worries and, as I said, had a complete peace about it. I knew it was going to be hard not to carry my son for a month. Saying goodbye to him in pre-op was the only heart-sink moment I had before the transplant.
The initial surgery date was postponed, as you shared. Why was it postponed and what was that like for you, your cousin and family to have to wait longer?
My cousin's body was retaining fluid, especially in and around his lungs. There was a possibility that he had an infection and their tests couldn't rule it out in time. Organ recipients have to take immunosuppressants, so their body doesn't reject the organ. However, if he had an infection at the time of the transplant, the immunosuppressants would also allow that infection to kill him.
It was a very hard thing to hear. We were told the transplant was cancelled at 8:30 p.m. the night before. So my family and his were all there, prepared to be in San Francisco for a week at least. We were both already admitted to UCSF and I was sitting with his family in his hospital room. They looked at me. I looked at them. We were so disappointed but we also understood the situation. There was a real concern that his condition wouldn't improve for the next available transplant date.
How did it feel when surgery day finally arrived?
Exciting. I honestly wasn't nervous at all. I was more concerned about whether or not I'd cleaned out my bowels enough prior to going under. I knew that, for me, the waiting would end when I fell asleep and if something bad happened after that then, well, I wouldn't even know really. For my family, though, their waiting didn't end until nearly 6 hours later when the surgeon gave them the report that all was well. I tried to be sensitive to their nerves and jitters.
How did you and your cousin feel right after surgery?
I felt bloated and gassy, drug foggy and tired. I had a really good attitude, though. I'd heard good news about my cousin's transplant and felt the scariest bits were behind us. My cousin said he didn't feel different right at first, but soon he realized he no longer felt like his body was toxic. He was given steroids, though, so I think that's why he felt a little better sooner.
How are you and he feeling now, almost two weeks after surgery?
My biggest complaint is a burning/itchy stomach around my incision and some lingering gas pains and digestive issues. I get tired easily and nap. I think he does too. I know he feels like a new man, though. His color has improved, his pain level is almost non-existent compared to what he lived with the past two years.
How is your liver function affected after being a donor? Are there any short-term or long-term lifestyle changes you have to make as a result?
The remnant liver functions properly and begins to grow. In about 4 to 6 weeks it regains almost all of its lost volume. Short-term, I'll get tired frequently. Because this is a major abdominal surgery, I can't lift more than 10 pounds for at least a month and have to slowly return to exercise. Long term, my body may not handle fatty foods the same way or it might adapt.
Is there anything you wish you’d known before going through the living donor process?
I wish I'd known that my cousin's insurance would've helped me with some of my travel costs. They didn't reach out to me until a week before our first scheduled transplant. They said they'd reimburse me. Then they revealed later it wouldn't be directly, but they'd reimburse my cousin and he'd have to disburse the funds. This just amounts to extra costs and extra stress.
What did you expect from this whole process and what did you not expect?
I expected some support from friends and family, but have been so grateful to see that support exceed my expectations as well. I expected the recovery process would be uncomfortable, and it is, but it's not all that painful. I think it's going faster than expected, actually. I didn't expect it would be so difficult to be away from home. I've stayed with family since leaving the hospital and it's great to have help and be nearer to UCSF for my appointments. But there really isn't anything like your own bed.
What does this process and life look like for you and your cousin going forward?
We both have follow-up appointments to make sure my remnant liver is growing and his new liver is getting settled in nicely to it's new home. However, he's getting blood work and infusions every other day almost. He will be a lot more carefully monitored. I'll get an ultrasound next week and then after that, it'll be month before they have me do blood work again. So long as things look good, my life returns to normal as soon as I'm healed enough to do all the physical things I used to do; run, lift, yoga, etc. It may be a slower journey for my cousin, but hopefully his life returns to a pre-sickness normal though he may have lifelong medications and periodic tests.
What did you learn from this experience?
I learned how utterly and completely blessed I am to be healthy. For those who are chronically ill, like my cousin, this their daily reality is heartbreaking. It's not just your pain and the uncertainty of your future. It's also dealing with the insurance companies, the financial limitations, struggling to find the right specialists, and fighting to get the care you really need. I watched as he was knocked out on drugs and his mother and partner had to advocate for his treatment to the nurses and specialists who came in and out, none of them truly knowing the big picture of his condition. It takes so much strength to be sick and not give up.
What helped you get through this whole experience?
My faith and my faith community. I had prayer and support and people to text when I was concerned or struggling. My family and my cousin's family were always available to talk or willing to help with travel plans and finances. My donor mentor's guidance and advice on how to approach things, and maintaining the right perspective. It also helped that I kept a journal of the process and, when we had a surgery date scheduled, I started sharing publicly on my blog about the journey. Sharing openly about my ups and downs in the living liver donor process has actually been a relief and release for me. I know that people who care about me are able to see where I'm at and what I've been dealing with.
What would you tell others who are considering being a living donor?
It's a great and wonderful thing to do! But please take time to explore and prepare for all aspects of this journey. Do you have people around you who support you and will be there for you afterward 100%? No matter how convinced you are in your heart that you are going to go through with this, still take the time to learn everything you can about the surgery and the risks. Actively hunt down your fears and concerns and face them head on. Find a donor mentor, preferably someone who has donated through the same transplant facility as your intended recipient. Prepare yourself for the post-op pain and discomfort. You have to be ready to "suck it up" and get walking if you want to recover quickly.
Is there anything else you’d like to share about your living donor journey?
Yes, I'd love to sing the praises of the surgeons and nurses I met at UCSF Parnassus. Very professional, very caring and very good at what they do. I'd love to point out the GoFundMe for my cousin's family. As I said, they have a lot of trips back to UCSF and non-medical expenses related to his transplant and recovery. If many people donated just $15, it would be such a huge help.
THE GOOD STUFF.
We asked Tiffany about some of her favorite things.
Fave workout/way to move: Run
Fave wellness practice: Prayer and meditation
Fave self-care practice: Rest days
Fave hobby: Making things (DIY stuff)
Fave food: Chinese pork baozi
Fave drink: Nuun Hydration
Fave snack: Almonds and cashews
Fave kitchen gadget/appliance: Instant Pot
Fave place in the world: Mountains of the Pacific Northwest
Who or what inspires you? Anyone who isn’t afraid to test their own limits.
Fave quote/saying/mantra and why:
“There is no greater love than to lay down one’s life for one’s friends.” –John 15:13
Because love beats fear every time.
Fave workout song: Depends on the mood. For example, if I’m lifting I like “Radioactive” by Imagine Dragons. If it’s yoga, it’s maybe some classical piano. If I’m running, nothing.
If you had a theme song, what would it be and why? Maybe “What I’ve Done” by Linkin Park. My life is a never-ending cycle of confronting my issues, self-forgiveness and moving forward with a clean slate to do better and be better.
Fave book: Hitchhiker’s Guide to the Galaxy
Fave website: Desiring God
Fave movie: Wonder Woman
Jessica Hamlin is an LA-born and bred journalist and editor who started taking pictures of food back when everyone used film cameras. A graduate of the Institute for Integrative Nutrition’s health coach training program, she’s passionate about wellness and enjoys making and discovering delicious and healthy food. Her work has appeared in Clean Plates, NPR affiliate KPCC, AOL, and Eater LA.