The Choice to Live

This has been an amazing weekend.  I just completed the runDisney Glass Slipper Challenge, with a 5K on Friday, a 10K on Saturday, and a 1/2 marathon today.  I am here and I did it.  if you believed the doctors in 2003, this wouldn’t have happened.

2003 was an incredible year.  I had started a hospice and was working with the best people you can imagine.  I married Bob, my Prince Charming, in June, with 120 of our family and closest friends present.  We built our dream home.  My children were all living close by and we had one 3 year old perfect grandson, Glenn.  We were on top of the world.  Then my daughter noticed these awful bruises, up and down my legs.  I looked like I had been beaten.  She wanted them checked but I said no.  Then, at a health fair, I found out that my cholesterol was elevated.  It had gone from 125 to 225, seemingly overnight.  It was time to get the bruises checked out.

My first stop was my medical director, who was surprised that my liver enzymes were elevated. After all kinds of tests, I was sent to Crawford Long Medical Center to the “grandfather” of liver disease in Atlanta.  He looked at me and said, “Young lady, I believe you have a rare autoimmune disease, something called PBC.”  I was scheduled for a liver biopsy, the very next week.  I started researching, and what I found wasn’t particularly encouraging.  The biopsy was done and the doctor confirmed it; most people with PBC had a life expectancy of 10 years, unless they received a transplant.

I joined an online support group, but everyone was so negative and they all shared a litany of ailments.  It seemed all were either on disability or were trying to get on disability, and this was not how I intended to live.  I made a conscious choice, that I was going to live.  I knew that I needed to take charge.  I am an RN and knew about the liver’s role within the body, so limiting chemicals and processed foods made perfect sense to me.  I am also a spiritual person, so prayer and a positive attitude were two of the other strategies I chose.  Finally, I decided I needed exercise. The doctor wanted to wait three months before placing me on the medication that would hopefully delay the progress.  My strategy worked, and after 3 months my labs were all normal, except for one.  My alkaline phosphatase was just a couple of points high, nothing concerning.  The doctor placed me on Urso Forte anyway, and everything went back to normal.

In the meantime, I began searching for options.  If I was going to have a transplant, who had the best results?   I became friends with a woman, on the PBC support group, whose husband had recently had a transplant at Emory.  We “clicked” and we met for lunch.  She recounted the process, but I had one question.  How much was the private jet that was required to get him to Jacksonville in time?  $3000.  That settled it.  I was going to Mayo, but I would still continue with my own treatment:  diet, exercise, prayer, and a positive attitude.

Since I was diagnosed, I have earned my PhD, started another business, had a total career change, and now have run a half marathon.  Bob is still my Prince Charming and we now have 10 grandchildren. I go to Mayo once a year and the tests at Mayo say that I am at Stage 0 (I was 1-2 when I was diagnosed). The docs say I will die with PBC and not from it.  Tonight, while I am spraying myself down with Biofreeze, I will offer a prayer of thanks.  My legs hurt and I have shin splints, but I am alive and have just accomplished something pretty darn amazing, even without an autoimmune disease. I choose to live.

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