One year later...

It's hard to believe that it's already been a year. I still remember when I got what I would later find out was THE call. If my sketchy memory serves me correct, this is a very brief summary of how my life was saved by a hero.

Alex got home from work and it was time to do our usual drive around to find something that sounded appetizing enough for me to eat. Between the sickness and all the drugs that I was on, I really had no appetite, and nothing really tasted good when I was able to eat. To top that off, I was also battling almost constant nausea.

So, off we went for a drive in my POS rental car. Why a rental car?  I had only recently dropped off my car for repair after hitting a deer on the way to Vanderbilt for my first call on Christmas Day. Luckily, I saw something that struck my fancy pretty early on in our drive; Steak & Shake. I am not much of a fast food junkie but for some reason a cheeseburger sounded like it would just hit the spot.

After waiting in line for what felt like forever, we finally departed with our bag full of junk food. We pulled out of the parking lot and headed home. I was starving, so I started eating. Alex, on the other hand, decided to test the limits of the rental car by trying to “squeal a tire.”  

Post tire squeal fail, me with a mouthful of cheeseburger, my phone rings; it was Vanderbilt. They were calling to let me know that I was number two/the backup candidate for a new liver. The individual who was first in line was very sick, possibly too sick for surgery. This person also needed two organs at once, and Vanderbilt had not yet determined whether the organs that were needed were both viable.

All that being said, I remember being overly calm through the entire conversation. I think this was because I felt like there was little chance that this would be my liver. This feeling was reinforced when the nurse told me I could go ahead and finish my cheeseburger. I thought, there's no way she would let me finish my meal if there was a good chance this liver could be mine.

We arrived home and started packing the car. Luckily, our bags were still packed from first call on Christmas Day. That being the case, I decided that I would take the time to shave my legs. Yes, I'm sure that's TMI, but in retrospect it's so funny that I was so sure it wasn't my liver that I took the time to make sure I had smooth legs.

Much like the last call, Alex and I talked about all the what if's and how much life could potentially change. This was the subject matter of most of our conversation during the drive to Nashville. Well, that and lots of bitching about what a POS of the rental car was. Lol!

We arrived at the emergency room at Vanderbilt and I went to check-in while Alex parked the car. Having just gone through this process at Christmas, I knew exactly what to expect, or at least that's what I thought. Alex met me in the emergency room and we made our way up to the seventh floor where the holding room was for potential liver transplant patients.

Upon our arrival on the seventh floor, things begin to feel different. The first time I went through this process it seem to move at a snail's pace. This time, it felt like everything was moving really fast. In fact, things are moving so quickly that the nurse couldn't keep up with everything else that was going on. Labs, x-rays, patient information; it felt like it was all happening at the same time.

When the nurse began explaining to me how to wash my body with a special soap, I knew something was different. I had not been asked to do this after receiving my first call on Christmas. Shortly thereafter, my surgeon pokes his head around the curtain and says,"I guess you know by now that this is your liver.” He also noted that he had hoped this liver would be mine, because it was perfect. Then, another surgeon came into the room. She had just recovered the liver from my donor. She went on to tell me that the liver was beautiful; it was perfect, shiny and healthy. This was around 11:30 pm on 1/7/2015.

There are no words to adequately express the emotions that I felt in that very moment. I was happy to be given a second chance at life. I was terrified of the surgery to come. I was heartbroken that someone had to die in order for me to live.

Luckily, my surgeon's desire to have me on the operating table as quickly as possible left little time for me to even think or feel. In fact, we were so pressed for time that Alex had to help answer questions for the nurse while I showered. And just to provide a little perspective on what I mean by "shower,” you have to wash each individual body part twice, never with the same washcloth. For example, you wash your left arm once with a washcloth and then you drop it on the ground, not to touch it again. Then you get another washcloth and wash the left arm again, and then you drop that one on the ground as well. And then you repeat this procedure for the right arm, as well as all of your other body parts. By the time I was done, there was a pile of washcloths at least two feet high.

No sooner than I returned to my bed in the holding room, a gentleman shows up with a bed to roll me down to pre-op. Before we could go, I needed to change into a new hospital gown that had what looked like a vacuum attachment on it. Lol. Once changed, we were off.

Upon arrival in preop, I found myself surrounded by a plethora of amazing hospital staff. They definitely knew what to do to help keep me as calm as possible. I also found out what that crazy vacuum attachment thingy on my gown was for. My nurse asked if I would be interested in an instant boob job, while she attached a hose to my gown. Before I could even respond, she flipped a switch and my chest inflated as if I had just been granted a set of double D's from the booby fairy. Nice warm air filled my gown to keep me toasty warm. Apparently, warm blankets are a no-no now.

At this point, we were still waiting on my parents to arrive. I was very worried that they wouldn't make it in time to see me before the surgery. Fortunately, we found out they would have to crossmatch my blood, so that would buy us a little more time. Another member of the staff offered to go wait at the elevators for my parents, so they could direct them to me as quickly as possible. When asked for a description to help them identify my parents, I told the gentleman to look for a tall man wearing camo.

Shortly thereafter, my parents were escorted to my bedside. The gentleman who greeted them at the elevator was impressed by the spot-on description of my dad. I was so glad they were able to make it in time to spend a few moments with me before I was wheeled off to surgery.

It wasn't long before my anesthesiologist came by to talk to me. This gentleman was amazing. His bedside manner and personality were both so calming and reassuring. He was aware that I would need heart valve surgery in the future, and he took the time to share with me that he had had that procedure as well. He exhibited such empathy. Little did I know, he was about to impact my life in a way I could have never imagined.

The blood crossmatch was complete, so it was time to start saying goodbye to my parents. Love and hugs were exchanged, along with a quick picture. I think this was somewhere around 1:00 to 2:00 am on 1/8/2015.

Alex walked beside the bed, holding my hand up until the point that we reached the doors of the operating room. He told me he loved me and then kissed me before I was rolled away. At this point, I was starting to panic and fall apart a bit.

I've been in operating rooms before, but this one was definitely the scariest one yet. So many people, scary medical devices and tools, so much chaos; I felt as if I was about to have a full blown panic attack.

My anesthesiologist had told me that they would have to do a special maneuver where they put pressure on my throat to intubate me. This was because I had had something to eat recently and it was to prevent me from aspirating any of the food. When he saw me so scared and emotional, he instructed one of the other anesthesiologists to perform the maneuver so he could come over and hold my hand and comfort me until I drifted off to sleep. Needless to say, I sent this doctor a long and emotional thank you letter.

I was able to quickly say a thank you to all in the room for what they were about to do, and then I was out.

The next thing I remember was the painful transfer to my hospital room bed, and the even more uncomfortable chest X-ray. Once that was over, and I got settled in, the reality of how much had already changed began to sink-in. The color of my skin and nails had already begun to change. The gift of new life was running through my veins. I will be forever grateful to my donor and their family. I hope to one day be able to meet them, and learn about the hero who saved my life.

Update on life these days

Hi, everyone

As most of you already know, I was added to the liver transplant list (UNOS - United Network for Organ Sharing) the end of January.  The wait for this news was nerve wrecking.  My pre-transplant tests concluded on January 23rd, but I had to wait for Vanderbilt's Transplant Committee to review my results the following Wednesday to determine if I would be approved for transplant.  I will never forget the call I received on January 30th, letting me know I would be listed with UNOS by the end of the day.  

I don't know that words can adequately describe how it felt to hear the words, "you've been approved for transplant."  Of course I was happy to hear that I had been approved for a procedure that, if successful, would save my life, but I was also frightened beyond belief of what lies ahead.  I know how my health with deteriorate while waiting for transplant, and I know the details of how serious the transplant process is (surgery and recovery included).  That all being said, I continue to try and focus on the positive and deal with each day as it comes.

One thing that has helped me stay positive and power through my moments of sadness has been the outpouring of love and support from family, friends and community.  Things have not been easy lately, with the development of more and more symptoms related to my liver diseases.  I knew there would be more downs than ups while waiting for transplant, but that doesn't make it any easier. Each time I start to hit a low, I think about all of the cards, calls, emails, texts, donations, prayers, support, etc. that I've received, and continue to receive.  I want you all to know how important you are to me, and to the success of my transplant.  

When I went through the pre-transplant screening process, I was asked over and over again about my support system.  Unlike many potential transplant candidates, my support system includes family, friends and a community of wonderful people.  When my mother told the pre-transplant social worker about the transplant fund that had been set-up for me, and the benefit that was being planned, she was just blown away.  Apparently, rockstar support systems like mine are not the norm :-). This information wasn't just good news to be shared, it was a vital part of my pre-transplant screening process, and the petition made for my transplant candidacy.  In short, you all were a part my being approved for transplant, so THANK YOU!!!

While I'm on the topic of support systems, I must say a HUGE thank you to all who helped organize and those who attended the benefit last month.  I was emotionally overwhelmed by the love, support and generosity shown.  I must apologize for my absence during some of the benefit; my travels from Chattanooga really took a toll on me, and I was fighting yet another bile duct infection.  Luckily, there was a couch in a back room at the Fishing Hole facility that provided the perfect place for me to rest, and allow people to stop in and visit with me.  

And, as silly as this may sound, thank you to everyone who complimented me on how good I looked at the benefit.  It was exhausting getting all "gussied-up," as one might call it, but it was worth it to feel normal and attractive for a while.  My sickness has really taken a toll on my body, so being able to conceal that briefly was quite refreshing.

There were also some questions that came-up after my visit to Oxford that I would like to provide information on.  Many people were surprised that I didn't look yellow at the benefit.  Well, as with many diseases, there can be fluctuations with symptoms.  Just a month earlier I was yellow (jaundiced), and I will probably be that color again soon.  In fact, I was so yellow at one point that a nurse struggled to identify my race.  I thought she was joking with me when she asked if I was white.  Lol!  

In addition to my skin color, there was also confusion about why I didn't look more "sick."  I do look "sick" more often than not, but I also fight hard to not let my sickness dictate my life.  It was relatively easy this winter to cover the scars all over my body where I've scratched myself until I bled (itching caused by the build-up of toxins in my body), or wear clothes that conceal the fact that my abdomen is swollen to the point that I feel like I look like I'm expecting (ascites), but I won't always be able to hide the way my sickness is impacting my outward appearance.  And as my diseases progress, things will get worse, but I will continue to fight to maintain as much normalcy as I can in my life.  Attitude and approach to sickness can play a vital roll in outcome.  I will beat this, and hopefully look relatively good doing it ;-)

For now, I wait for that life changing call.  My MELD score (which is calculated from various laboratory values) is updated with UNOS regularly.  This is an important part of ranking me on the transplant list, but not the only factor considered.  Severe symptoms can also have a significant impact on transplant list ranking.  Luckily, I have an amazing team of doctors that are monitoring me regularly to make sure that I get a new liver as soon as possible, so I don't worry so much about all of the technical components of my ranking.  I can't control where things go from here, so I just focus on taking care of myself as much as I can, and enjoying life.

I love you all!    



  

Summary of my journey to date

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