Seeing we just returned from Florida on Saturday, May 22, regular testing at the Clinic on Monday and meeting with my long-time pediatric hepatologist on Tuesday was a little stressful. Then, we found out the testing revealed my liver needs to come out now, and in a matter of a discussion lasting for under an hour, our lives were turned completely inside out. My doctor and I have a close relationship, and she fought back tears as my mom broke down. I knew then, that we were forced onto a journey that we didn’t ever believe would happen to “us,” a journey that we ultimately will never forget.
Wednesday was a matter of the transplant coordinators figuring out how to schedule the “cornerstone” appointments of anesthesia, social work, surgeon, and hepatologist around completing testing like EKGs, ABGs, a dozen of physician consults, and meeting everyone from social workers to psychiatrists to anesthesiologists. In no time, they had me scheduled to spend Thursday and Friday attending a long checklist of appointments and tests, with a much needed long weekend (Memorial Day), followed by intense Tuesday and Wednesday schedules. And then I’m done. Or so they say.
Monday’s tests were an abdomen ultrasound and a contrast MRCP (a form of MRI) The new venous collaterals and mysterious tumor sent up a million red flags, and on Tuesday, my doctor told me how important it was that we expedite the pre-transplant work up and get the liver out ASAP. As I’ve said, she was excited about the outcome and thinks my life will be something I’ve never known before. I’ll feel good, have energy, and be able to really live. Being sick since age 5, I just won’t have any idea what it’s like. I like the idea of it though!
In between telling our close friends and family, the next few days were just rough.
Thursday was by far the craziest day of pre-transplant prep – it was painful, it was long, and we had a ton amount of information thrown at us.
5:45am: Leave for Cleveland
7am: Laboratory – about 30 vials of blood pretty much drained my energy
7:40: Adult gastroenterologist consult
8:30 Financial specialist
9am: Radiology and surgeon consult
10am: Chest X-ray (which got pushed to late afternoon)
10:30am: EKG (which also got pushed to late afternoon)
11am: Pulmonary function testing
11:30am: Transplant coordinator
12:30pm: Computerized health questionnaire
1pm: Infectious disease
2:30pm: Arterial blood gas testing (PAIN)
Friday was a little better…
The day began at 7:30am when I got radioactive dye injected into my vein for later bone imaging.
8:30am: Lisa, social worker
10:30am: Bone scan to check for any movement of the tumor
HOME early!
I chilled like crazy all weekend, as fatigue is my biggest symptom and I don’t bounce back too well from long days.
Next week, I’ll be meeting with a hem-onc, a women’s health CNP, an anesthesia specialist, and there will be a large teaching session where we will be drilled in the As-Zs of a liver transplant.
I’m a little thankful I’m too tired to care much about this. Otherwise I think I might be a mess. Plus God is carrying us right now, I can feel it. Plus this isn’t quite reality yet.
Love to you all.
Amanda's Journey 