Carla's Story. In Her Own Words...
It was a warm March morning in 2012 when I loaded up the car like any other spring break. We were headed off to Florida for baseball. Grant had gone ahead on the baseball bus. Leon was meeting us after a medical conference and Wesley and Nichelle were in tow, perhaps only pseudo willingly.
I had been struggling with itching for a while. But because there were so many simple cures and changes I had tried (changing soaps, lotions and luffas) I had not embarked on a real investigation into the cause of the changes. We checked into a beach front condo we leased through VRBO and I made a plan to walk on the beach every morning to refresh and decompress. As I slowed down and relaxed my mind and body for the first time in a while, I realized that as much as I loved the beach I hated the feeling of sand on my skin 24-7. Every surface that touched my skin felt like sandpaper rubbing against me. And now the itching, and my constant scratching, was starting to cause bleeding, leaving scabs and scars as a reminder.
After returning home and re-entering my busy life, I was compelled to evaluate my situation honestly (Doctor, heal thy self). My work-up yielded way more than I had ever dreamed. I took all of my results to a trusted GI friend and colleague and was given the diagnosis of Primary Sclerosing Cholangitis (PSC).
Not a common food or environmental allergy that would respond to simple anti-histamine therapy but a rare 1/100,000 possibly autoimmune disease that was destroying my billiary system, damaging my liver and changing my life, forever.
Little did I know that my life as the “Energizer Bunny” was gone and that my struggle with sleepless nights, fatigue, itching, scaring, digestive changes, hair loss, hand pain and numbness, carpel tunnel had just begun. Here is some background on the disease.
Early symptoms often include:
Signs and symptoms that may appear as the disease progresses include:
- Pain in the upper right part of the abdomen
- Night sweats
- Enlarged liver
- Enlarged spleen
- Weight loss
- Yellow eyes and skin (jaundice)
By Grant’s junior year in high school, the extent of my life changes became almost over powering. I was riding the road form junior day to junior day followed by a summer of football team mom prep and football camps. It was at the South Carolina camp in July of 2013 that I realized that the mixture of heat, sweat, lack of sleep and PSC had escalated my symptoms beyond my ability to control them during the day. There was no treatment and the symptomatic relief medications did not control the belching, keloiding and jaundice enough for me to keep up the appearance that all was well.
Determined to make it through 2 back to back high school senior years for Grant and Wesley (2 football seasons, 2 wrestling seasons, 1 baseball season, 2 soccer season, 2 senior PDCs, 2 Proms, 2 post prom parties, 2 senior awards nights, and 2 graduations) and Nichelle’s transition from middle to high school, I pushed forward with my mind over matter approached to make sure each child had his/her moment in time.
Meanwhile back at Genesis my healing dream and spirit was being challenged daily by my inability to get a restful night sleep (often unable to get through a REM cycle until 4am) and my inability to get dressed comfortably. While dressing in the morning, I often changed clothes 2-3 times to find an outfit that was professional and didn’t itch. My eyes were closing during patient interviews. More often than not I required a mid-day nap (20-40 min to recharge). I found myself swaying on door frames like a cat on a scratching post. Patients were starting to notice and I was forced to admit to myself that I had to change my lifestyle.
But, change what? Change how? This did not fit the master plan. It certainly did not fit the persona.
Those that knew me best knew that this born on the grid-iron die hard football brat had to be “like mike” wowing different arenas of people with my ability to perform at the top of my game at all times.
This insanity required “Mike to pass” How was I going to get through the college years with the boys and make Nichelle’s high school years rewarding for her, too? How would I run my practice, coach soccer, be hospital Chief of staff and keep my other servant leadership roles?
A still small voice said “Dig deep! Dig deep!” How many times had I screamed this on the sidelines to my young soccer players over the years? How many times had I heard my hall of fame football coach dad screamed this to teams he coached over the years?
I had to “DIG DEEP”! I had to find that place inside myself that would allow me to stand and perform, even though I was tired, hungry (for relief), drained and wanted to fall.
So I (I found that balance between dig deep and passing):
- Changed my work hours (so I wouldn’t be late every day)
- Worked smarter
- Taught Nurse Practitioner students
- Ran MEC meeting
- Attended Lovett Board meetings
- Watched Friday night games on the riverbank (Wesley’s senior year)
- Managed a girls’ club soccer team
- Traveled off on Saturdays to State College and other Big Ten venues (flying to various airports and sleep driving)
Energy and, sometimes, hope waning, I clung ever so tightly to faith to pull me through and as always, HE has given me comfort and replenished my hope. I spent the first 5 years of my treatment at one facility with little hope of cure because they do not do living donor transplants. And thinking of the degree of deterioration required for a cadaveric transplant was unconscionable. However, as HE would have it: an astute colleague was watching a program that touted the success of another local medical facility. That facility, Piedmont Hospital, was doing living donor transplants and I transferred my care to the liver program there.
The blessing was immediately realized when they initiated their multi-disciplinary team approach. The result: multi-vessel cardiovascular disease requiring a 4 Coronary Artery By-Pass Graft surgery (CABG x 4) Open heart surgery to address arteries that had become clogged, thanks to my failing liver’s inability to process the cholesterol in my sister. Open heart surgery. It was devastating on the one hand, but a blessing on the other.
Blessing? Yes, blessing. The healer was now the patient and the helper needed help. An awkward position to say the least. However, the gift of love and support that I found from family, friends, and neighbors as well as communities of Lovett, Genesis, and Penn State re-fueled and recharged me in my darkest hour.
Once again, I found myself hanging on the everlasting arm. Needing to push through a Thanksgiving soccer tournament, yet another graduation and bowl game to get to a clear heart surgery date (January 9, 2018). As promised, HE delivered:
- Leon has his dream job (MD-CEO)
- Grant has graduated and is off to the NFL (per his gift, blessing and dream)
- Wesley has his vision and course charted
- Nichelle is blossoming on all fronts (school, sports, social)
And so I guess it is my turn. I must “Order My Steps” (GMWA women of worship). HE has brought me up the “Rough Side of the Mountain” (Dave Powers). I know “No Weapon” (Fred Hammond) formed against me will prosper. I am comforted by my Ladies in Carla Crew shouting “You Will Win” (Jekalyn Carr). I know the reason “Why We Sing” (Kirk Franklin). I will “Never Give Up” (Yolanda Adam) but I can’t wait till “Tomorrow” (The Winans)
So we are here today to complete this journey back to “Energizer Bunny” status and the giver needs the greatest gift. A gift to restore life. A life that longs to restore its ability to be a blessing more than be to be blessed. By focusing on healing, loving and giving.
Accordingly, I have rallied the troops and ask that what was meant for my harm be used for good. It is my greatest wish and prayer, that through our search for a compatible donor for myself, we return the gift to those in need by working to develop a solid organ donor registry for others in need of a living donor liver or kidney.