The Exceptional Cure
By Christine Pollock
Please take a moment to read Christine’s story.
Afflicted with Crohn’s Ulcerative Colitis (CUC) at the tender age of 16, I had a nagging sense
that I was very sick, more so than any doctor at that time and place could have imagined for a
seemingly healthy and active high school cheerleader growing up in a small town in upstate New
York. In those days I painted posters in high school for pep-rallies and football games that said
things like “Farmer Power”. It’s hard to believe that time in my life ever existed as now I’m
world’s away.
Diagnosis for me, like many other patients, came many years later in my early twenties. I was
devastated and cried at every doctor appointment. I plowed through lots of information on CUC
and discovered in my research that there was a rare and fatal complication of CUC, a liver disease
called Primary Sclerosing Cholangitis (PSC). Approximately 70% of PSC patients are afflicted
with Crohn’s or UC. The second that I read the lines from a library book, “the liver is necessary
to maintain life”, my heart sank and I knew. Soon after, the prognosis from my doctor was that
progression of PSC appeared to be slow but that a liver transplant was inevitable – my liver
would with all certainty fail and I would die without a liver transplant. Sadly, the only feeling I
had was relief that I didn’t have an imaginary or mental illness. Now, my doctor felt in an instant
a decade of my pain as he delivered my life sentence and curiously wondered why I stopped
crying that day. I arranged and rearranged my life to suit my chronic autoimmune issues which
came to me in new ways and then just as suddenly disappeared. However my liver disease was
quiet and seemingly non-existent for quite a bit more than a decade. I moved forward graduating
from Fordham University with a B.S. in accounting after several years attending at night and
working full-time during the day. I had a rewarding career in the “Big Four” at KPMG and more
recently financial services giant Allianz Global Investors, a renowned top asset management firm.
However 3 years ago at the age of 41, my life, career and future came to a screeching halt when I
was wait-listed for a transplant as my illness had progressed into End-stage Liver Disease.
Today, I am 44 year’s old and my liver has been failing miserably. Twenty-eight years worth of
inflammation has left horrific and unimaginable damage to my body. The shocking truth of it all
is that I’m not able to receive a transplant due to the predictions of a mathematical model called
the MELD (Model End-stage Liver Disease). The MELD was implemented by UNOS (United
Network for Organ Sharing) in 2002 and predicts life expectancy. UNOS is a national
organization that sets and enforces the rules for organ allocation (who receives a liver and when).
All transplant centers are required to abide by UNOS rules. The MELD score ranges from 6 to 40
(40 being the most sick) and is determined by three factors: liver function (Total Bilirubin), blood
clotting factor (INR), and kidney function (Creatinine). While the MELD is good, it is not a
robust model and presently as many as 20% of patients are poorly served by MELD. There are
patients that need a transplant but the MELD score is not accurately reflecting that need. This is
unfortunately my plight. There are a few exceptions to the MELD score in place. However, there
is no exception for PSC patients who are subject to the added risk of bile duct cancer (i.e.
Cholangiocarcinoma). In fact, PSC patients have a risk factor as high as 30% for developing bile
duct cancer. MRI’s and tumor markers in your blood (i.e. CA19-9, CEA) are monitored closely
as results are used to detect bile duct cancer. However, even with close follow-up the bile duct
cancer may not be detected timely and can quickly metastasize throughout the body. My tumor
markers have elevated levels and my MRI indicates a dozen or more masses throughout my liver.
I’ve experienced a number of what are known in transplant as “decompensating events”. The five
events are ascites, varices, jaundice, encephalopathy, and bile duct cancer. End-stage liver
disease for me began with ascites or vast fluid retention in my abdomen, giving the appearance of
pregnancy and there was so much pressure, it gave me a hernia. Additionally, uncontrolled portal
hypertension lead to the development of dilated veins in my esophagus and stomach called
varices. Varices, when they become large enough, rupture and fill your esophagus and lungs with
blood and you can potentially drown without treatment. I’ve experienced intense itching which
has literally caused me to scratch and rip my skin off until I bleed. There are really no words that
adequately depict the absolute mental torture of this seemingly minor symptom. I am
malnourished and plummeted to 99 pounds. I have deficiencies such as zinc, calcium and
multiple other issues including severely low platelet, white, and red blood cell counts. Lastly, my
mental capacity is diminishing from the toxins seeping into my brain. I have bouts of confusion
and short-term memory loss called encephalopathy. One incidence covered memory loss over a
period of several weeks in time. In addition, encephalopathy has caused me neurological
impairments such as involuntary hand movements and changes in sleeping patterns, effectively
confusing day and night. While all of the above was happening, my resistance became so low that
I contracted a severe bacterial infection in my lung (necrotizing pneumonia). My doctor
hospitalized me in quarantine for 10 days. After release, I went through 3 months of treatment
with at-home nursing care, and also gave myself infusions of multiple IV antibiotics through a
PICC line implanted in my arm. I had a reaction to IV medications after 2 months and had a
serious case of tendonitis which rendered me bed-ridden and wheel-chair bound for weeks. None
of the aforementioned “decompensating” events are allowable exceptions to receive a transplant.
The MELD score is a stead-fast rule and my score has been low throughout this entire ordeal. In
addition it was expressed that with an infection in my lung of that magnitude, I may be
considered too sick for a transplant. With the exclusion of bile duct cancer, these
decompensating events and the serious life-threatening infection I endured are merely
considered “quality of life issues” and are not allowable exceptions to the MELD score.
A liver transplant is considered by some to be “a lifesaving transplant” only when a patient is at
death’s door. A transplant for a PSC patient is considered a cure enabling a patient to return to
life as they know it. There is no treatment proven effective for those with PSC including the
medication Ursodiol and ERCP procedures. Treatment plans are primarily aimed at alleviating
symptoms. However, almost always there are side effects to the medications that may be
dangerous or worse than the symptoms. At best, treatment is truly a trade-off or a small band-aid
placed on a gaping bleeding wound. A timely liver transplant for a PSC patient offers a new lease
on life, a second chance. The rejection rate for a liver transplant is less than 10% and the antirejection medications improve every year. It is my deep fear that PSC patients will not be
transplanted in the future unless there is a specific exception to the MELD score for PSC. I’ve
provided a number of compelling reasons for an exception. Please remember that I was just a
child who grew up and graduated into the adult world of transplant. Also understand that I
received so many assurances of transplant in the early stages of liver disease. The environment
had dramatically changed over time unbeknownst to me and now we are all aware. Please review
the pie chart demonstrating the excessive need for liver transplants according to UNOS data (note
that PSC accounts for 5% of bile duct disease). The number one indication for a liver transplant is
Hepatitis C Virus (approximately 40%). After transplant, the Hepatitis C Virus returns to infect
the new liver in 99% of all patients. Many patients are dying waiting for a transplant primarily
due to the staggering need.
This is my story and I hope and pray every day for change, an exception for PSC that affords all
PSC patients who require a liver transplant the opportunity for a second chance in life. Time is
ticking for me, my doctor appealed for an exception to my MELD score based on my need for
transplant and it was approved by the UNOS Review Board in my Region (Region 10 in Indiana)
late in 2010. The exact same appeal was recently denied in January 2011 when recertifying my
MELD score with UNOS in the new year. Since the Review Board has left me hanging in the
balance between life and death, I am making a personal appeal to the public for a “Directed
Donation”. Please tell your families, friends, and colleagues that Christine Pollock needs a liver
transplant soon. Families willing to donate organs on behalf of a loved one should swiftly contact
the Indiana Organ Procurement Organization (IOPO) and request the donation of a liver to be
made to Christine Pollock, a liver transplant patient at IU/Clarian Health. The IOPO phone
number is 888-275-4676. Out of state directed donations from the mid-west, east and south
coasts of the country may also be arranged through the local and Indiana organ procurement
organizations. I urge the public to take action that could save the lives of those with Crohn’s, UC
with PSC. Voice your concerns to UNOS and request “a public proposal to formalize an
exception to the MELD for PSC patients.” UNOS can conveniently be contacted by email at
publiccomment@unos.org; by phone at (804) 782-4800; or by fax (804) 782-4817.
Please read some rather interesting articles about PSC and the state of affairs in the world of liver
transplantation. Articles were published by the Wall Street Journal, New York Times, Los
Angeles Times and other local news media. Click on the links below:
Ryan Arnold and Chad Arnold (PSC Living donor, a story of brotherly love ends in tragedy)
http://www.kdvr.com/news/kdvr-liver-transplant-death-txt,0,3369112.story
4 Japanese Gangsters get UCLA transplants
http://www.newser.com/story/28794/4-japanese-gangsters-get-ucla-liver-transplants.html
http://www.latimes.com/news/local/la-me-ucla31-2008may31,0,1503718.story
Olympic Liver Transplant Recipient Chris Klug promotes organ donation (a PSC patient)
http://www.voanews.com/english/news/usa/Olympic-Transplant-Recipient-Promotes-Organ-Donation85503192.html
University of Pittsburgh Medical Center: Volume Business in Liver Transplants (Top surgeon resigns after
falsifying research and beating up female social worker)
http/: /online.wsj.com/article/SB122722880819446359.html
Indications for Liver Transplantation
(UNOS Registry, 2007)
Illicit drug use and
alcohol-related diseases
Unknown
etiology
10%
Autoimmune
and bile duct
diseases
15%
Non alcoholrelated,
metabolic,
malignancy,
and certain
other viral
diseases
30%
Illicit drug use
and alcoholrelated
diseases
45%
Non alcohol-related,
metabolic, malignancy,
and certain other viral
diseases
Autoimmune and bile
duct diseases
Unknown etiology