Life After Diagnosis
Living With PBC
(Primary Biliary Cirrhosis)
By Chantel Steburg
I remember those days and I remember them well. Growing up I was always a healthy eater and extremely active. I was always the one would choose an apple as a snack unlike my brother who would go for the fruit rollups in the pantry. It was moments like those that my parents would always use me in their "junk food lectures" as their perfect example. "Who do you think will live longer, you or Chantel?" They would always ask one of my brothers and the correct answer is ding, ding, ding..."Your sister." That's right, I was going to live longer and healthier because I was making the right choice. It was moments these that made me believe I was truly invincible and nothing would ever bring me down.
I remained overall a healthy eater throughout my middle school and high school days. I even kept up a healthy exercise thanks to dance and cheerleading. Those days seemed amazing, nothing could harm me. Life after high school and into the real world was years away. I had lots of friends, was with the "in crowd", I had a wonderful family, and I did my best to make sure my high school days would be one I would never forget.
Me and my cousin Cheri Mutz
After high school I followed my parent's wishes and went straight to college at West Valley College in Saratoga with the plan to transfer to a university somewhere preferably away from home. My major would be English literature and hopefully someday I would become a high school English teacher. I had at least my next five years all planned out and all I had to do was turn those plans into actions. My first semester of college was amazing; I still had amazing friends, had good grades, and was doing everything I needed to do. I had so many good times during those first few months of college and had few things to worry about.
My second semester of college started sooner than I could've imagined. I was taking five classes and was working a full time job to pay for my tuition. One night about half way through the semester my legs started getting really itchy. I would scratch at it but the itch wouldn't go away so I would scratch harder and before I knew it I had red dots all over where I was scratching. The itching kept me up for about an hour until I finally was able to doze off. Every night was like this for about a week and then out of nowhere it just stopped. I figured it must have been irritation from my soap or lotion so I quickly replaced them both with sensitive skin products. About a month later the itchiness came back and this time lasted a bit longer than a week. I related it to my menstrual cycle and pushed it of like it was no big deal. The next month it came back only this time it wasn't going away. After putting up with it for about three weeks I told my parents. We changed everything in the house (detergent, lotions, etc) to sensitive skin products and made sure I stayed away from anything we cleaned the house with. Nothing helped and it was getting worse by the day. I was getting to the point where I was literally scratching my skin raw; I was creating rashes and cuts into my skin and would find anything sharp and pointy to relieve the itching. I would use combs, rulers, and even the metal part of my phone charger with hopes that something will dig into my skin far enough to make the itching go away. Finally I made an appointment with my doctor.
My first doctor's visit was very basic, he made sure I tried to get rid of the irritated skin on my own and decided to run several blood tests. I got the results back about two weeks later and everything was normal except for my Liver Function Tests (LFT). There are three main parts to this test ALT, ALP, and GGT; all were elevated to over 100 (the normal range is around 40). He let me know it was nothing to worry about but we will have to keep it monitor on it for a few weeks. So every week I would go in for blood work and every week was a different result. The first few trips the counts just kept getting higher and one time they dropped a few numbers. My doctor believed that whatever it is must be going away on its own but we will still have to watch my LFT's for about two more weeks. Even though my test were getting better the itching was just getting worse, instead of it just being my legs and feet it was spreading throughout my body. From my head to my toes I would scratch all day and it would keep my up all night. I decided to see a dermatologist and hopefully get some answers but all I got was "it's your hot showers, just have colder ones and moisturize after and that should do it". Which I'm sure as you can probably have guessed it didn't do much but left me missing my hot showers.
A week later I went in for another blood test and the results weren't as good as the last one. My LFT's shot up from 150 to the 200's and it was at that time that my doctor admitted to me he had no answers. He transferred me to a liver specialist over at a local hospital. She was a very sweet woman and an amazing doctor. No matter what I asked she was always able to answer my questions and "dumb it down" for me since I don't speak doctor. While I was there I had two ultra sounds and a liver biopsy as well as my normal blood tests about every two to three weeks. The liver biopsy was the worst out of every test I had to take there. The biopsy itself wasn't that bad but the infection afterwards was far from pleasant. I was hospitalized just four days after the biopsy and remained in the hospital for three days due to the reduced number we found in my white blood cell count. Through every test we eliminated several diseases (lupus, any hepatitis, HIV, cancer) but never found what I had. My LFT's now made their way to the 300 range and were continuing their mission to keep rising. I also started developing another wonderful symptom to add onto the itching, fatigue. No matter the number of hours I would sleep I'd always fill tired and exhausted which eventually made me have to cut back on many things I had always been able to do. My liver specialist transferred me over to another specialist at Stanford hospital and it was at that moment I decided I would have to change my college plans around.
I recently got accepted into ISU [Idaho State University] and was on my way to getting closer to my Teaching degree. I had it planned out to where I would live, what car I would drive, and what classes I would be taking. My hard decision came in those few months when I decided to throw the plan of moving to Idaho out the window. My health was in no good condition to be moving so far away from my family, my main support throughout this whole struggle. The new specialist I was assigned to was at Stanford hospital and I knew I couldn't afford flying out every month. I had to stay and I knew that even though it was a difficult choice it was for my best. So I stayed and applied for my third fall semester at West Valley College but didn't give up my hopes on transferring to another university.
Playing with my brothers
My new specialist was Tami Daugherty at Stanford Medical Center. She was a tall slender woman with gorgeous red curls that helped shaped her face, not at all what I had envisioned for a Stanford doctor. Even though she wasn't at all what I expected on looks, she was everything and more in as a professional doctor.
As soon as she got my case she went straight to work on tests. We did several blood tests to eliminate more things and got me signed up to do a MRI. I went back the following month with the same news that I had got at my last specialist, higher LFT's and no clue with that's going on with my body. She assured me that she still had plenty of other things to test for, so more blood work and an ultra sound was ordered.
The next visit we found out my LFT's were now moving into the 450's and still everything came back normal. She let me know that she believed I had an autoimmune disease I'm just not testing positive for it, which is completely possible.
That same visit she looked at me and asked, "Are you okay? You look exhausted. How much sleep have you been getting?" The look of pain, stress, and exhaustion must have been screaming from every expression on my face. I was falling behind on my studies because my body never had enough energy. The anxiety from the itching made every muscle in my body tense and the itching was beginning to feel more like a sharp pain instead of just a regular itch. My body literally was become a torture chamber to my mind and I felt like if anyone touched me I would just scream. I informed my doctor that I had at least ten hours of sleep the night before and twelve hours the night before that. Dr. Daugherty gave me a concerned look and gave me a prescription for a pill called ursodiol and informed me that it won't do any harm to my body but what it does is it breaks down the bile in my liver. She directed me to take on pill three times a day for a month and hopefully my LFT's will change for the better.
I came back a month later and to my surprise my LFT's dropped from the 450's to 375. This was a dramatic change and was significant enough for Dr. Daugherty to give me what I had been searching for during the past year and a half, a diagnosis. I was diagnosed with Primary Biliary Cirrhosis (PBC) but she was quickly to inform me that I do not have cirrhosis even though it's part of the diseases name.
PBC is an autoimmune disease where the body breaks down the bile ducts in the liver to the point where bile can no longer pass through to other parts of the body. Over a period of time after having so much bile build up it will be too much for the liver to handle and will cause liver tissue damage and that is the final stage of PBC, the stage where cirrhosis hits. The disease is mainly diagnosed with people between the ages of 35-60 and nine times out of ten are women. Like any other autoimmune disease there is no cure for it only ways to manage it and that is done through ursodiol. My doctor also let me know that I will have a liver specialist for the rest of my life and we will have to make sure I don't get the other diseases that come with PBC. More than likely down the road I will need a liver transplant but was told not to worry about that right now because that is years down the road.
The whole time she was explaining the disease to me I felt every emotion a human being could possibly feel all at once. I was happy, sad, mad, frustrated, scared, worried, devastated, excited, but mainly I was relieved that I finally had a diagnosis. I informed my family and since the next day was Thanksgiving I didn't think much of the disease and went on with life as normal.
It wasn't until that following day when I was at work alone when the diagnosis really it me. It was the first time I let myself think about the future and what could happen. The emotion came running through my veins all at once, I cried the whole eight hours at work and continued until I fell asleep that night.
That entire weekend I didn't want to do anything but lay around the house all day close to my mom. She held me the whole time and never once asked any questions, I think she already knew that no words had to be said that weekend. Sunday evening dragged around and that night in bed I told myself I can't go around feeling sorry for myself for the rest of my life. I had school to get through and a life that I would regret if I didn't live it.
Me and my family
I finished the semester but knew it was my weakest semester I had yet. The following semester came and quickly turned into my hardest struggle. The whole time I was mad that everyone around me was healthy and they didn't know how lucky they truly were. None of my friends had to take pills, worry about what medication they took, do emergency room runs, cancel plans because of fatigue, or worry about prescription refills. They never had to be scared about showing their legs in the summer because everyone will see the bruises, scabs, and scars you carved into your skin with your very own nails. They didn't wake up in mornings and see blood spots all over their sheets because they scratched the scabs off while they were asleep. I envied every person around me and it caused me to lose focus on my goals and what really mattered. Somehow I managed to get decent grades but I knew that I could've done better in all of my classes. I was depressed but made sure nobody around me knew it, not even my family or boyfriend because I didn't want them to know about my pain or even worse talk about it.
The summer after my third year of college I found PBCers.org. An online group filled with people struggling with the same disease I have. I have met several people on it and even though they are all much older than me they understand the hardships I go through. They know what it's like to get hours of sleep and still be exhausted throughout the day or the extra caution I have to go through with my body on a daily basis. They let me vent with them about my hard times and always tell me that there is life after being diagnosed. A member of the group recommended everyone to read an amazing article called "The Spoon Theory". I have to admit that everyone needs to read it, whether you know someone with a disease or disability, have one yourself, or just want a good read. I understand now how many spoons I have, how I have to use my spoons, and when I need to save them or borrow one.
This year will be my one year diagnosis with PBC. This year represents the hardest and best year of my life. I went from being mad at the world and asking "why me" on a daily basis to enjoying the world and asking "why not me". This past year I have cried myself to sleep on numerous occasions. I have been frustrated at people when they say those five annoying words, "But you don't look sick". I have cried with my family and boyfriend after admitting to them how scared I am. I lost insurance and had to do everything in my power to stop the tears from running down my cheek when I was rejected from getting it back for having a preexisting condition. I've found people who can understand me and have helped me figure out how to take care of my body and cope with the disease. I had to explain to my friends no bar hoping on my 21st birthday and not be surprised when they didn't understand. Never in one year have I ever had as many extreme highs or extreme lows as I have had in this past year.
My brothers and me at Tulume, Mexico
This semester I'm taking a class on intercultural communications and our first speech we were assigned was about who we are. Part of the speech had to be on where we wanted to be in the future. It was that part that had me thinking the hardest. My future is very different than every student in my class. I know I'll need a liver transplant and always need different tests. My risks for liver cancer are higher than most as well as having complications when I'm ready for children. I realized after thinking about my future for quite some time that the only thing I want from it is to one day be healthy again.
I am a firm believer that everything happens for a reason no matter how good or bad the situation is. Even though I might not know the reason right now, I have no doubts that one day I will understand why I got PBC. I don't know if I will be the longest one to live out of my siblings or even my parents. But I do know that no matter how short or long my life is it will be lived to its fullest potential no matter what lies ahead in my future.