My journey down the path to liver transplantation began back
in 2000. I have primary sclerosing
cholangitis with overlapping autoimmune hepatitis, as well as crohn’s
disease. There are three autoimmune
liver diseases (autoimmune hepatitis, primary biliary cirrhosis and primary
sclerosing cholangitis; in order from least to most severe); I have the
unfortunate luck of suffering from two of them, which is extremely rare.
For those of you who are not familiar with autoimmune
diseases, they are genetic conditions that cause the human immune system to become
hyperactive and attack normal, healthy tissues.
Some examples of autoimmune diseases that you may be more familiar with
include, but are not limited to Lupus, Multiple Sclerosis, Lou Gehrig's disease
and Rheumatoid arthritis. In terms of my
liver diseases, primary sclerosing cholangitis is a disease where my immune
system attacks my bile ducts, and autoimmune hepatitis is a disease where my
immune system attacks my liver.
I was lucky, in the sense that my initial diagnosis was made
when I was completely asymptomatic. Many
individuals with autoimmune liver disease(s) do not find out they are sick
until they start to present with significant symptoms. I had gone in for routine lab work prior to
having my wisdom teeth removed and my doctors noticed an unusual elevation in
my liver enzymes. These lab results
triggered my doctors to conduct a variety of tests which resulted in my first
misdiagnosis of autoimmune hepatitis.
For many years after my first misdiagnosis, my doctors just
monitored my labs with little to no medical intervention. Given that I was asymptomatic, no action
seemed necessary at that point, or at least that is what my doctors believed.
In 2004, after moving to a new city, I took steps to
establish myself with a new team of doctors.
After a thorough review of my medical records, it was determined that my
initial diagnosis of autoimmune hepatitis was incorrect. A second round of diagnostic tests was
performed and I was given my second misdiagnosis of primary biliary
cirrhosis.
I was still relatively asymptomatic at this point but this
diagnosis came with more monitoring and medications. There are no “treatments” for autoimmune
liver diseases, only medications and procedures to try and delay liver
transplant and manage symptoms. This
misdiagnosis was the one that really made me face the reality of my being
sick.
Two years later, in 2006, I moved again. This time, I was knowledgeable enough about
medical literature and research to locate a team of doctors who were some of
the best in the areas of expertise that I needed. I made appointments to get established with a
transplant clinic at the UNC Chapel Hill and found my world being flipped
upside-down again; the doctors did not believe I had primary biliary cirrhosis.
After a third round of diagnostic tests, I was given my
final (and correct) diagnosis of primary sclerosing cholangitis with overlapping
autoimmune hepatitis. This was also the
point in which I was diagnosed with crohn’s disease. At this point, I felt like the wind had been
knocked out of me. There was so much
information to absorb, and new medications that came with some nasty side
effects. I really struggled to figure
out how to take charge of my health.
Luckily, I was surrounded with a team of medical
professionals that helped me become a more proactive patient. I found ways to help myself (diet, physical
activity and behavior change) and my team of doctors focused on the latest
developments in medicine to keep me well as long as they could.
From the outside, most people would have never known I was
even sick. I had my bad days, and those
who knew me best could spot that from a mile away. I fell in love with cycling, started running
again, became a triathlete, ran my first half marathon, started teaching spin
classes; I did everything I could to not let my diseases dictate my life.
I continued to live a relatively “normal” life until the
summer of 2013. It was during this time
that I started to feel a little out of sorts.
I couldn’t put my finger on what was wrong, but I knew something was
off. I was in the process of moving to
Chattanooga, so I just wrote it off as exhaustion.
I moved to Chattanooga the end of August and made my first
trip to the emergency room in September.
I was as yellow as a lemon and struggling to function with even simple
daily living activities. The emergency
room physician felt I had a blocked bile duct and sent me to a local
gastroenterologist for evaluation.
Given that even a healthy individual can develop a blocked
bile duct, I didn’t initially connect my problems to my liver diseases. Based on the previous discussions I had with
my team of physicians, there did not anticipate problems with bile duct
strictures for many, many years. I went
to see the local gastroenterologist, who proceeded to place a stent in my bile
duct, in hopes of a quick resolution of my problems. Unfortunately, that wasn’t the case.
My health continued to rapidly deteriorate and the local
gastroenterologist did not feel that there were any local physicians who were
qualified to handle such a rare and complicated case as mine. Side note, sometimes being “special” sucks. Lol.
Gotta find humor somewhere, right? J
Luckily, my team of physicians back at
UNC Chapel Hill had some connections as Vanderbilt, so I was able to get an
appointment there relatively quickly.
My life and body were being transformed so quickly that I
found myself almost unrecognizable. I
went from being fit and active, to being bed ridden. My body was withering away before my eyes and
each day was worse than the one before.
My jaundice continued to worsen, along with the symptoms that manifest
as a result of the build-up of toxins in the body. I was counting the minutes until I could get
to Nashville for my appointment.
The day finally arrived and I was off to Nashville. I was so hopeful that this appointment would
result in the identification of a quick fix, but that wasn’t the case. The decision was made to make one last
surgical attempt, and if that intervention didn’t work, then it would be time
to discuss transplant. Surgery was
scheduled and I remained optimistic that this would be the first step in my
road to a full recovery.
Unfortunately, the surgical intervention was not the
answer. My health continued to
deteriorate after the procedure and the decision was made that transplant was
my only option. I can’t express the
range of emotions that I felt in that very moment. I knew from the beginning that transplant
might be in my future, but facing the reality that it is about to happen is a
totally different thing.
Lucky for me, I am blessed to have some of the most amazing
people in the world in my life. The
outpouring of encouragement, love and support that I’ve received has me at a
loss for words. It’s because of each and
every one of you that I know I’ll get through this, and be even stronger than I
was before. I can’t say thank you
enough.
I will try to post updates on my progress as much as
possible.
I love you all ~ Bridget
