2018 LIVEr Champion
I remember getting the call. The transplant team had found a live liver donor that was a match. My heart skipped a beat, I asked my coordinator to repeat it. I could hardly take a breath before I started to sob. My husband held me and we thanked God. Who is this person? We had been waiting for 7 months for this call. Every time we saw the transplant number on my phone we assumed it was news that another donor was denied. I wasn’t hopeless at that point as I wasn’t waiting as long as others but my symptoms had halted my life. I was in palliative care and things looked grim. I am blessed to say I had many people wanting to help me. After learning, one by one, that the dozens of people I had contact with were denied, I wasn’t sure where we stood and if there was anyone left on the list at all.
It all started 14 years prior when I was 20 years old. I had reoccurring kidney infections that sent me to the emergency room in awful pain. They did a CT scan and determined I had polycystic kidney and liver disease. I soon saw a specialist and they confirmed I had many cysts in my liver which they described as resembling swiss cheese, I also had numerous cysts in each kidney. The doctor told me most people don’t have issues until they are well into their 60’s. He said I was one of the youngest he’d seen and that he wanted imaging done annually.
As time went on, I didn’t have any problems until I was 34 years old. Life was happening, I had three kids and a husband, and I led an active life and worked out often. I was just starting school to become a nurse when I started experiencing rapid and intense swelling in my upper abdomen. The swelling would cause me to double over in pain and I wouldn’t be able to stand up right for two hours plus. The swelling would hit me at different times and without warning. It happened a few times a month and then weekly and finally daily. I was in so much pain and often the swelling stayed for days. I soon took a break from school as I couldn’t focus past the pain and I had to stop working out, which was very disheartening as it was my greatest stress release. I found myself struggling to function normally but having to come home and collapse and cry in pain.
I made an appointment with my general practitioner in January 2017, who ordered imaging, he then referred me to a liver specialist. The liver specialist saw my images and said this was out of her realm of knowledge and she referred me to a general surgeon. The general surgeon told my husband and I that my liver was the size of an eight month old fetus and was lodged in my rib cage and continued all the way down into my pelvis. The cysts had caused my liver to grow and there wasn’t enough healthy liver to sustain me if they did a resection. He said I will most likely need a liver transplant. He referred me to the Liver Transplant Center at UCHealth.
I was floored. My world shook in disbelief and fear. I wasn’t a year out from an unrelated emergency surgery from another operation where things had swung in the balance. My husband and I crumbled as soon as we left the building. I had no idea what a transplant entailed and all I thought of was my children and our future as a family. I didn’t sleep for 7 weeks while I awaited the news from UCHealth and their determination. I got the call, I need a transplant and that is my only option. With apprehension in our hearts my husband and I attended the evaluation and I was listed April 2017 on the deceased donor transplant list for our region.
My liver function was close to normal so my MELD score (model end-stage liver disease) was
close to normal too. It was unlikely I would get a deceased donor liver and I was told to pursue
the live donor option. I couldn’t have been luckier to be in the care at UCHealth which is the
only hospital that performs this surgery in our six state region. My doctor at UCHealth, Dr.
Burton was the first of many to reassure me that my symptoms were real and that they were
going to help me. He answered every question I had and was a constant source of comfort and
guidance for my husband and I. I’m forever grateful for the patience and understanding he
showed me and for his tireless efforts as my advocate. My family began filling out the applications to donate and other close friends signed up as well. One by one they were ruled out as a match. By October 2017 my liver had grown and my symptoms had me in and out of the emergency room. I was referred to palliative care at this time.
My lungs were collapsing, my heart was lying on my liver and I was barely able to eat as my
stomach was paper thin and crammed between my spleen and liver. My energy level was so low that I would drop my kids off to school and sleep the remainder of the day. My husband had to go down to part time at his job to help with the kids. I would sit and observe my family, still moving at normal speed as I lay watching it go by. It’s a helpless feeling being unable to be an active parent because you’re too weak and in such pain.
Kids don’t understand that you want to play, you just can’t. I began to plan for the worst, I
recorded my voice and wrote letters to my family. I stayed up every night just looking at my
sleeping children. Touching their cheeks and telling them how sorry I am that this happened. I
promised them I wouldn’t give up, that I wanted and needed to be here for them.
My sister called and told me her close friend Robin had graciously signed up to be a donor but
had recently been denied. The good news was that her husband, Jeff had also signed up and he’s been asked to fly in for evaluation. My heart leapt! Not only was I so excited that things were moving again but that there are people out there willing to help who don’t even know me. We got news that Jeff was still a match after evaluation and biopsy and they were moving forward. The feelings of hope were burning again and I got another breath of life.
The call came. Jeff is my match!
Pre-op was an entire day of tests and at that point I was already exhausted just looking at the
schedule. Half way through the day my coordinator told us that Jeff was there. On the same
floor! One room away from us! My mind went blank even though I had rehearsed what I would
say to him about a hundred times. Jeff walked in the room and I leapt off the exam table and
hugged him with all my strength. Everything that was building up in me the whole year came out. He was here, he’s committed to doing this and I love him! This total stranger entered my
heart without thought or hesitation. He started to talk and I just started at him dying to say thank you a million times. He told my husband and I that if his wife were sick and he couldn’t help her, it would be the worst thing he could imagine and he would hope that someone would jump in and save her too. He had tears in his eyes, you could see the love he has for her. This guy is an ex-navy seal, he has jumped out of an airplane over 4,000 times and is a father of three and has a wife. He walks into dangerous situations fearlessly. We soon learned he leads an extraordinary life!
On December 4 2017, Jeff saved my life and gifted me more time with my family. He is my
brother and I will always be here for him, I strive to make him proud and that the sacrifice he
made wasn’t in vain. Jeff has made a significant impact with his selfless act and people are
taking notice and being inspired to sign up as donors. I want to be a better person because of him and I want to pay it forward any chance I get. Jeff has reassured me that he was meant to do this.
His liver happened to be so large that I only needed 33% whereas most adult recipients need
60%. I can’t help but feel as if Jeff is my angel on earth, he lifts my spirits with his positivity and his smile is infectious. I just love being near him, I watch everyone in the room light up and smile. He’s my hero and my whole family loves him, I’m so lucky to even know him let alone call him my brother. He was in the best hands with Dr. Pomfret who is the leading live donor surgeon at UCHealth. Her husband, Dr. Pomposelli was my surgeon and with their combined expertise and knowledge, they executed a technical and difficult operation successfully. We love our team at UCHealth. Fellows and surgeons were top notch and helped us on our journey. The CNA’s and the Nurses were exceptional, they cared for me and showed so much compassion and skill and care, I truly bonded with them and try to stop by often.
I had a village rally together to support my family and myself. They provided meals for us and
made it easier to enjoy each other and allowed me to properly recover after surgery. I am so
thankful to all that helped with my children and offered prayers and hugs. My sister Michelle
was my matriarch and led me through the dark and was there to hold my hand and be my voice.
She and my Aunt flew in to nurse me back to health, they were my saving grace. My husband
James, was a rock that I could cling to when I thought I couldn’t go on. He never left my side,
not for a second and he was brave when I wasn’t. He is the love of my life and our hearts know
each other deeper than most and I will love him all of my gifted days!
We did it James and we gained a brother through it all!