In July 2009, I was a liver donor to my 21 year old daughter, Jen, whose liver failed due to autoimmune hepatitis. I first wrote about the experience in December 2009. Though I accurately captured the emotion and the gratitude I felt at the time, I glossed over many aspects of the journey. Our lives had not yet gotten back to normal, and although Jen would return to school in a few weeks, part of me was still holding my breath, overwhelmed by all we had been through and a little fearful of the future. Now, with the passage of time and watching Jen resume her life in continued good health, it is easier to write the story.
Our story begins in January 2008 with a phone call from her roommate letting us know that they were bringing her to an ER because she was vomiting blood. I remember telling myself, as I drove down to her college in Maryland, that she couldn’t be that sick because she had just been home the week before. Finding her in the intensive care unit hooked up to IV’s dispelled that illusion. Within the hour, one of the doctors informed me that they were readying her for transport to another hospital because they believed she would need a liver transplant. I thought I had misheard him. As he repeated it and the word ‘transplant’ reverberated through my head, all I could imagine was the nightmare of watching Jen getting progressively sicker as she waited for a donor organ. Given that Jen had two younger brothers back in NJ, and knowing that this would be a long journey, I suggested we need to find a hospital in NY. After some research and help from friends, we were flown to NewYork-Presbyterian Hospital/Columbia.
Dr. Brown began evaluating her to determine what had caused my daughter’s liver to fail. Midway through the testing he mentioned to me that if she did need a transplant, she would be a good candidate for living donation. That was the first time I had ever heard those words, and as he described the procedure I felt as if someone had thrown me a lifeline. Here was a way to help Jen out of this nightmare. After two days of testing, he determined that a small portion of her liver was still working and, with medication, she could resume her life for a time. She went back to college that summer and continued until spring break -March 2009- when, during a scheduled visit, Dr. Brown told us she now needed the transplant.
As hard as it was to hear those words again, we were prepared. Jen was listed for transplantation with UNOS and allowed to return to college to finish her semester. The next day we contacted the living donor office at NYPH/Columbia. Her father opted to be evaluated first, but the tests determined that he would not be a good candidate due to underlying health conditions. I am sure it was as hard for the doctors to say as it was for him to hear, but seeing that their paramount concern was for the safety of the donors was very reassuring. The next day I started the evaluation, which involves several days of tests and meetings with various team members. I was relieved when they called to say I could donate! Jen could now have the transplant at an optimal time for her! (Because of the nature of her disease, Jen’s MELD score would have remained low, resulting in a very long wait for a donor organ had she remained on the UNOS waitlist.)
In my opinion, living donation is easier on the family than waiting for a donor organ. I know that sounds counterintuitive, but it is true. You have time to make a plan, which gives you some control. You set a date that is optimal for the patient and all family members. You have time to organize two care teams for the recipient and the donor. When I remember the chaos that ensued during Jen’s first hospitalization, and the smooth organized weeks we had after the transplant surgery, the value of having time to prepare can not be overstated. Knowing that family and friends were caring for Jen and her siblings made it easier for me to focus on healing after the surgery.
All the preparation and planning got my mind focused and my spirit strong, at least until the week before surgery. Some personal issues and an awareness of my own weakness when it comes to needles and blood (I faint!) made me start to doubt myself. I was not afraid of the surgery because I trusted my surgeon, Dr. Samstein. But I was afraid that I would have a panic attack and I wouldn’t be able to donate, and that I would let Jen down and myself. Jen and I went in together for our pre-operative appointments. Dr. Samstein explained the surgery — a partially laparoscopic procedure involving removal of my left lobe (about 40% of my liver). I remember sitting there numbly trying to control my rising anxiety. We discussed my issues with needles and agreed that we would decide the morning of surgery whether to have an epidural. Then Dr. Samstein looked at me in a very calm and kind manner and assured me that he takes special care of the living donors. I don’t know what it was exactly, but this sense of calm enveloped me and I felt safe! On the way home I told Jen that I had been afraid, but now I believed everything was going to be fine. And it was!
The morning of the surgery was surreal. Walking into the OR is a strange experience. I opted not to have the epidural, but I did go under anesthesia before having any IV’s inserted. I remember waking up, seeing my family and having them tell me that Jen was ok and then falling back to sleep. The following morning, much to my surprise, there was Jen, IV pole in tow, walking into my room looking strong and full of energy. It is one of my favorite memories! The next four days in the hospital passed quickly. I was never really in pain because it was well managed. There was discomfort at the site of the scar, but most of my time was spent sleeping. I was glad to get home and shower and sleep in my own bed. I continued on painkillers for about a week and then would take Tylenol just at night for another few days. I started walking around the block. Friends would drop off food and we would venture a little further each day. I remained tired. There is deep fatigue as your body works to regrow the liver, but within five weeks it had dissipated and I resumed my normal activities. I do not work outside of the home but keep busy with my children’s activities and volunteering.
Jen was in the hospital for two weeks with a small infection. She had some difficulty initially adjusting to the medications but has since done well. She returned to college and graduated in January 2011. She is working now and plans to return to school in September for her Masters. Often when we run into someone in town who has heard the story, they are surprised to see how well Jen looks.
What have I learned from this experience? I have learned that I have a strong daughter who faced this adversity with courage and grace. Though I know that this is still the beginning and there will be bumps in the road, she will be okay. The CLDT team will always be there to take care of her.
I discovered my own courage and strength and it has served me well as I travel through this life. I have a renewed appreciation for my own health, and I exercise and eat healthier than I did prior to surgery. I am thankful that I was given the chance to help my daughter. I think we all believe that if a loved one was sick, we would do anything to help them. Living donors get the chance to do just that. We are the lucky ones! That sentiment, and the fact that we would all do it again in a heartbeat, is echoed by all the living donors I have met.
Lastly, I recognize how truly difficult it is to express the gratitude that we feel to all who helped us during this journey. To the family and friends who lovingly surrounded us with their support. To the doctors and nurses who cared for Jen. To the living donor team who safely guided me through this process, especially Dr. Samstein. I know how lucky I was to be on the receiving end of his extraordinary dedication, skill and compassion.
So in an effort to give back and, in some small way, help another family facing this situation, I became a living donor mentor and volunteer on the transplant floor of the hospital. By helping others I hope to honor those who helped us. This can be a long and arduous journey, but with the exceptional care provided by the Center for Liver Disease and Transplantation, support of family and friends, and guidance from those who have gone before, the path is made easier.
Susanne Mullman