Life and Death: Hannah's Transplant Journey
By Hannah | @Hannah_rosenfelder | November 6, 2019
Are you an organ donor or have you ever considered being one? I know for me I thought the whole idea of taking my organs out of me and donating them was weird and unknown. Then at 15, I found myself needing a liver and again at 25.
There are 114,000 people in the US waiting on an organ.
Every 10 minutes there is another person added to the National Transplant list.
On average 20 people a day die waiting for an organ.
With it being National donor awareness month I wanted to share with you my transplant stories in hopes that it would inspire you to check that box off on your driver’s license and save up to 8 peoples lives with just your vital organs and enhance more than 100 through tissue donation.
At six weeks old my family found out I had a rare liver disease called Biliary Atresia and were immediately rushed to Children’s Hospital to have a life saving surgery called a Kasai. At that point they told my parents I was going to need a liver transplant. Soon after they placed me on the list but at this time it was hard to do an organ transplant in baby. They sent us home but every few weeks I would get an infection (Cholangitis) and have to be placed in the hospital. I spent most of my first year in the hospital. My dad was a pastor and my parents weren’t going to settle for me having a transplant so young with such high risks. We were a praying family with faith that something would change. I got sick one night and was in the hospital for weeks. They were giving me high doses of steroids in hopes that my liver would start working again. They told my parents that it was time to put me on the donor list. They sent me home and my family kept praying and believing something would change. One day my liver out of nowhere kicked in and they inactivated me from the transplant list and we lived our lives. We had many hospital visits throughout the years but my liver always kept going.
Around middle school time things started to change they said puberty is hard on the body and it put a strain on my liver. I was in and out of the hospital every 6 weeks starting in eighth grade. I moved to a private school to insure I would pass that year. I
started doing well my freshman year having fun in high school with my friends. A few days before my 15 birthday I got sicker than I had ever remembered being. Bile was in my blood so anything that touched my skin felt like needles, my eyes and skin were yellow. They had a very hard time getting my liver up and running again. I remember walking into clinic the week after being let out of the hospital. At this point having a transplant was never talked about so I had no idea what it really was or that I may need one. I was 15 and just wanted to do what the other kids were doing so I tried to keep my life as normal as possible. I went into the hospital came out and moved on, I never let myself be the sick kid. I played sports and never thought about my health problems. At clinic that day I was told that I needed on the transplant lists asap. It was a shocker to say the least.
I had no idea what it really meant to have a transplant and I wasn’t sure I wanted to know. That day I met a guy named Chris Klug he was an Olympic snowboarder who had a liver transplant. He had a nonprofit called Donor Dudes that spread donor awareness. He was doing a documentary and wanted to know if he could film my journey. After
taking some time to think about it, I said yes. So now the transplant journey began. I had tests done, psychiatrist appointments to make sure I knew what was about to happen, was given booklets to read ( which I never read because I didn’t want to scare myself) and was placed on the list. Once you are on the list they get everyone who is close to yous phone number. You have absolutely no idea when this phone call is going to come.
About 9 months after being placed on the list I remember we were getting ready to go to church on a Wednesday night. Usually I never brought my cell phone because I would always pull it out in church and get in trouble. Well I just felt this weird feeling in my gut I needed to bring it so without thinking to much I did. We were in the middle of praise and worship when my phone kept ringing with this weird unknown number showing up. I walked into the hall to listen to the voicemail. I hear this woman’s voice say Hannah we have a liver for you I need you to call me back asap. I froze and dropped the phone I was so scared yet so excited. I took a minute to get myself under control when I walked back in and leaned over to my mom and whispered “ mom I got the call they have a liver”. She looked at me like she had just seen a ghost and quickly runs up on stage. My dad looks over like what is this crazy lady doing on my stage im in the middle of preaching. She grabs his coat jacket and whispers to him what I had just told her. They both begin to shake and cry at the same time as my dad tells the church I am sorry but we have to leave. The hospital just called and they have a liver for Hannah. We call Chris and his camera crew to let them know along with our family. I am still in shock at this point not quite sure what to do. My main concern is my sister going to get here in time.
We call the hospital back and they informed us that they are still looking for someone for the lungs so to hold tight and they would callus when things changed. It was great because it allowed my sister to fly in but it also was scary because now I had all this time to think about what was going to happen when I had never allowed myself to do that. Thursday night they called us to let us know that we needed to be there at 4 am to start pre op. I don’t think I said more than 20 words from the time we got the call to the time we got to the hospital. So much happened so fast after we got to Children's and for the sake of time ill skip it all.I remember waking up however long later and looking at my sister with tears running down my face saying look sis my legs aren’t swollen anymore and my eyes are white for the first time in my life. I felt so much gratitude for the family who gave me my life back. It was the first time in my life I felt healthy and like I could do anything. The next few years were some of the best years of my life and I will be forever grateful to that family.
About 5 years later my liver started to have problems again. We faced many hospital visits and at the age of 24 I was told I needed another transplant. It took me a while to say yes to being put on the list. I was scared to go through it again but I also felt bad that I needed another one. Almost like I failed because my body rejected it. I had a fiance at this point in time and loved him so very much that I knew I wanted to do this and that it was not my fault. We had the tests done and got placed back on the transplant list. The unknown of when that call was going to come was hard for me because I had experienced it once before. I tried to prepare Ryan for it as much as one can.
It was two weeks before Christmas when Ryan and I went to a Christmas party downtown with my parents. We had so much fun dancing and enjoying ourselves that night without a care in the world. We went back to our place that night and I slept in our spare room because our bed had been bothering my back. I thought I turned off my phone but at 4 am I kept getting phone calls from this random number. At first it didn’t click with me but then all of a sudden I knew but I was too scared to answer. I ran into our room to tell Ryan right as his phone rang. He picked it up and sure enough it was the hospital. I took the phone and they told me they had a liver and needed me to be there within the hour. I hung up the phone and started to cry I told Ry I’m not sure I can do this I am so scared. He took me in his arms and said we got this baby we can do it together. We began to pack as we each called our family and friends to let them know it was time.
I am not sure I can put into words the gratitude I have for each donor family. I am so beyond blessed to not only have one organ donor family but to have two. Because of their selfless act I now am married and have a beautiful miracle baby that would never have happened if it wasn’t for them. I am sharing my story with you in hopes that you will become a donor. If it seems weird to you like it did to me at first please ask me or
anyone else questions and as many as you can to become comfortable to make that decision. You never know whose life you are going to save and the impact it will have. So thank you to each and every one of you who are donors the gift you are giving is immeasurable. My family and I will forever spread donor awareness in hopes to save even one more life.
Here is a link for you that will take you to the website to register. I’d love to hear if you are a donor or if you have now decided to be one.
Hannah is 29 years old she was born with Biliary Atresia. She has had two liver transplants and is determined to live a life full of purpose. She just moved to Texas with her husband Ryan and daughter Hadley. They own a travel company and have helped hundreds of people take their bucket list trips.