For Patients Caregiver Tips and Advice For Medical Professionals

Jessica H.

Jessica H.

Primary Biliary Cholangitis

In February 2014, I started itching like crazy, and after 5 months of not getting any answers other than “allergies” or “you are imagining the itch,” I landed in the Emergency Department with jaundice of the skin and eyes.  I was told that I had hepatitis, and to “deal with it.”

I pushed for a GI consult, and the physician that heard my case immediately ordered labs and called me that night stating that she had an idea about what was going on, but that she was waiting for confirmation.  She also prescribed medicine for my itching.  Four days later, I was in her office, and was told that I had Primary Biliary Cirrhosis, that there was no cure, but my symptoms could be treated.

As a cardiac ICU nurse, it was hard to digest having a disease that could not be fixed.  I am used to giving a medication or treatment, and seeing results in 5-10 minutes.  Since I had never heard of PBC, I started googling it immediately. Bad move.  Googling medical diseases only brings up the bad stuff.  Scares the bejeezus out of people.  I then went to the American Liver Foundation website, and immediately got some relief and found support.

Luckily, I had a fantastic doctor who listened to my concerns, and a family that was willing to do whatever necessary to keep me healthy.  The fatigue I was experiencing was incredible.  I had to switch from being a 12/hour night shift RN to days, then decrease my hours to 8hr/day.  It definitely helped, and I have been blessed with wonderful coworkers that have helped me through that transition.  I remember listening to the American Liver Foundation’s PBC webinar, and thinking “wow, I am not crazy other people feel this way too!”

In November 2014, after watching my LFTs continue to climb, my doctor said that it was time to be referred to a transplant center.  Talk about scary.  My mother and I immediately rallied the wagons, and had the prayer circles going, as we waited to get in with a transplant center.   I couldn’t believe the hoops that I had to jump through to see a specialist.  IU Health had a 3-4 month waitlist, and my insurance would only pay for their facility to treat me.  We took a leap of faith, drove down to Vanderbilt, and met with a wonderful doctor who made some medication adjustments until I could get in at IU Health.  Two weeks later, one of the physicians that I work with made some calls and got me into IU Health.

With my medication adjustments, my labs were already better, and I was not considered for a transplant.  Hoooray!  By February 2015, my LFTs were the lowest that they have been in almost a year.  In June, my numbers jumped up, and I met with my IU Health liver specialist.  He has recommended me for a drug trial that has been amazing so far.  They are seeing this medication reversing cirrhosis, and practically curing PSC and PBC.  I am being screened right now, and I hope I will be lucky enough to get the trial medication.  Either way, by participating in the trial, I know that I am helping other people like me who are needing a better treatment or cure.

This has definitely been an eye-opening experience.  I definitely take the LFTs into account when I am caring for my patients, and now I have firsthand experience dealing with insurance and trying to get patients into specialists.  I hope that I can provide support and comfort to people dealing with PBC and other chronic diseases.  The American Liver Foundation provided much needed answers, comfort and support in my time of need.  I can’t think of a better cause to be associated with and to raise money for.  I know that there are lots of people in the community dealing with much more severe liver issues, and I hope that we can provide them the comfort and support that I received, and hopefully continue to fund research for a cure.  I’ve been an EMT, RN and now I am a physician extender.  I love to help people, no matter what I am going through.  Life is much better with a smile and a positive attitude!  If I can touch one person with my message, and make a difference to one person, that makes my day.


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