LIVEr Champion

2018 LIVEr Champion

Melinda’s Story

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!

2017 LIVEr Champion

Charlie’s Story

Charlie Richardson and his twin sister were born 7 weeks premature in May 2005. When he was 3 days old Charlie developed necrotizing entercolitis, which affected his underdeveloped intestines, and he needed 2 surgeries to remove dead bowel tissue. He was placed on TPN (total parenteral nutrition or IV fluids) to receive his nutrition and was expected to be home within a few weeks. Unfortunately his body did not heal as doctors expected and he spent the next 4 months in the NICU getting most of his nutrition from IV fluids. This long term use of TPN put a strain on Charlie’s liver and caused scarring which we were hoping would heal over time. This scarring eventually caused Charlie to develop portal hypertension. As his blood could not freely flow through his liver, it began to back up in to his spleen and caused internal bleeding. This resulted in Charlie’s spleen becoming abnormally, and increasingly, large. His sports activities would require him to wear a protective shirt to prevent damage or rupture of his spleen.

In 2013 Charlie got off the bus from school on his way home and vomited large amounts of blood. He was taken by ambulance and then by Flight for Life helicopter to Children’s Hospital where he received an upper endoscopy and banding procedure to cut off blood flow from esophageal varices that had developed due to his portal hypertension. The blood had nowhere to go due to the pressure in his portal vein so it found other routes through his esophagus. This procedure was the first of 9 scopes Charlie had over the next 1 1/2 years. After this time it was determined by his doctors that Charlie’s liver was getting progressively worse and a liver transplant was his only hope. Within a short 2 months we got the call that a liver was available for Charlie. Words cannot express what we were feeling when we got that call and we are forever grateful for the selfless gift he has been given.

Since Charlie’s 2014 transplant he has been doing amazingly well and his new liver is working perfectly! His smile, through the pain and recovery that followed, continued to shine through. He is a model of strength, joy, courage and light for all who know him. He is our hero. We trust that God has a plan to help Charlie live the life he envisions in his spirit and this is demonstrated each day that he continues to thrive.

2016 LIVEr Champion

Greetings from Harry and Claudia!

About 8 years ago I was informed that I had contracted Hepatitis B and that it had progressed into cirrhosis. The only resolution for cirrhosis is a liver transplant or death. After shock and surprise and a fair amount of research, I discovered that my mother had contracted Hep B through a blood transfusion she received after a miscarriage. Hep B is highly contagious and somehow I must have been exposed to the disease as a kid.

Initially, my health was unstable with severe fatigue, lots of nausea, frequent doctor visits and numerous lab tests to monitor my condition.

The real fun started about 2 ½ years ago when my GI doctor recommended that I have my gallbladder removed. While this procedure went well, it was subsequently followed by the early stage discovery of carcinoma. Nearly all Hep B cases evolve into cancer, so it was simply a matter of time.

The cancer exception finally allowed me to apply for the transplant list, since my natural liver function, MELD score, was too good to get me listed. The advent of cancer lead to a TACE procedure, which treats the tumor with chemotherapy.

After running the gauntlet to get listed the final hurdle was to have a partially blocked artery stented. This is a routine procedure that is very common, and required by the liver surgeons to move ahead.

During my stent procedure, my heart flat lined and my cardiologist saved my life. Four hours later, I flat lined again and once again I was brought back from the great beyond. At this point, they finally discovered that I had an aneurism in the Venus de Vasalva area of my heart. The stent procedure aggravated this area and caused my heart chamber to fill with blood, making it impossible for my heart to beat at all.

I was kept in a comma for 4 days. After regaining conscious, they kept me in bed so as not to bleed again, and scheduled an operation to repair the bubble in my artery. Being bed ridden, lead to a DVT in my leg which lead to the need for blood-thinners.

While the heart operation went nearly perfect, the thinned blood was slowly leaking from the surgery wound, into my right lung. I was released and sent home, but had to return upon developing a fever. After being re-admitted the doctors planned another operation to save my lung which had accumulated so much fluid it was collapsing. While never confirmed this was the likely cause of the fever.

The second surgery was roughly 30 days from the first one, and while successful, it was a lot rougher procedure than anyone expected. Instead of resolving my condition laparoscopically, they had to completely open my chest again and manually massage my lungs back to normal. Another 6+ hours under the knife.

Unfortunately the aftermath of these surgeries left me unable to eat normally. I went from 200 lbs to about 160 by March of 2014. It’s important to note that I still didn’t have a stent, and therefore unable to get listed for a transplant. Slowly my weight began to return and I was back to 180 by summer. A date was set to finally insert the necessary stent.

But that would not be the end of it.

Imagining detected another aneurism in the artery that feeds the spleen and also showed that the tumor required another TACE procedure, as the cancer was still active.
So I had these 3 procedures (stent, aneurysm and TACE) last summer, and I was finally listed for transplant 6 months later than expected. The accumulations of these events lead to another eating disorder that ultimately required me to install a feeding tube, last October, to maintain my weight. The feeding tube would remain for a full year.

The frequent vomiting that went with the weight loss also lead to severe bouts of encephalopathy (ammonia build up in the blood do to liver failure) and was the cause of multiple hospitalizations. Fearing my liver would fail before another one became available, I was encouraged to seek an alternative to Colorado for the transplant. Some areas of the country have shorter waiting lists and might be the only way to survive.
Claudia and I chose the Cleveland Clinic, because of its reputation and because my GI doctor served as a fellow there before moving to Colorado.

To make a long story short, Cleveland turned out to be a disaster and the trip we took in February to get evaluated for transplant resulted in a 3 month stay. Cleveland outright rejected me as a viable candidate, sent my heart into fibrillation (nearly 200bpm) and was recommending hospice care before I left. Claudia was told, I simply would not survive.

I was hospitalized most of that time, and I returned to Colorado in May weighing just 140 lbs via a private ICU to ICU air ambulance service. I could barely walk and couldn’t speak without drooling on myself. I was temporarily removed from the Colorado transplant list until I was capable of withstanding the rigors of the surgery.

The turning point for me came when the nutritionist changed my feeding formula, and worked with me to get back to eating solid food again. Co-incidentally the frequent bouts of encephalopathy ended inexplicably I was ultimately re-listed and after seven liver offers which fell through for various reasons, I weighed in at 195 on 11/13 and was finally rewarded with a viable donor. A mere 6 days earlier I was on the gurney 20 ft from the OR door, when they decided not to use the liver that was targeted for me. Quite the roller coaster ride!

Being as the surgery was on Friday the 13th and nothing has been easy this far, they had to re-enter the following day through the already stapled incision to stop some excessive bleeding and again the following day they returned me to OR for one last clean up to improve the blood flow to the bile duct.

By now I was completely spent, but the healing was finally underway. I was discharged on 11/23, returned once more due to an unexplained fever, and finally back home on Thanksgiving Day.

After 6 weeks of recovery, everything seems to be going well. I still travel to Denver once a week to be tested and for them to adjust my anti-rejection medication. Claudia has been nothing but a saint throughout the entire episode; operating as a concerned mate, as the supreme caregiver, as an insurance and pharma guru, and as an unrelenting advocate at every step of the way.

I’m a very lucky guy for having Claudia at my side, for the commitment of my doctors to make me whole again, and for the generosity of the donor for providing the gift of life.
Claudia and I are looking forward to turning the corner and moving into the next phase of our life. It will take a while for this transition for sure. Claudia and I feel so blessed to have each and every one of you as family and friends and associates. You have made this difficult journey tolerable with your calls, visits, notes, prayers and wishes.

While I have cheated the hangman no less than 4 times, I feel no sense of entitlement. Tomorrow is promised to no one and each day is a special gift. We should all make the most of it.

Happy Holidays to you and yours and best wishes for the coming new year.

Bless you ALL.

Comments are closed.