Pre-op Photos

Pre-op pictures.  (Remember, we got called in at 1:30am and they didn’t take me to surgery until after dinner time!)

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Trish RN gives it a thumbs up!

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Too early! Where is my lip gloss?

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Waiting up all night!

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Part of my liver team including Peter & Karen

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My sweet surgeon, Dr. Fred. (Frederico Aucejo)

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Lisa my social worker and I.  I love her!tumblr_l8m9ueaLM91qc81o3o1_1280

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A hug for Jen to last through surgery!

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Me and my “transport” friend

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Last time with my family before surgery!

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Week 2 – More!

It’s Wednesday, and we’re at it the Clinic again!  Right now I’m on the transplant floor in the waiting room.  I have my last appointment at 2, and then I’m free to go!  Well, until they think of something else or I come in for inpatient testing on the 14/15th.

This morning, we met with a nutritionist, anesthesiologist (why are they all so HOT always?!) and worked some with the transplant coordinator.  Then another transplant coordinator put on an information meeting for us where we covered everything from A-Z.  Dad came up to meet us for that since I knew he’d learn a lot.  He and Mom went to grab lunch while I’m sitting here waiting for my 2pm.  I guess I could have gone with them, but I would have needed a wheelchair and then a semi truck to haul our total of 5 Vera Bradleys on it.  Excessive much?

Nutritionist didn’t seem to mind my awful diet, but she wants me to up the protein so I don’t have too much muscle wasting post-op.  Anesthesiologist asked pages of questions and concluded several times, “You’ll sail through this,” “Wow, you’ll get through this with flying colors!”  So that was good.

Since my insomnia has multiplied a zillion fold in the past week, I’m hoping I can talk the transplant psychiatrist to give me something stronger but urban legend around here says she’s pretty picky on drugs and is actually specializes with drug rehab.  Some psychs won’t give an anti-anxiety to anyone because they think patients need to learn breathing skills, imagery, personal ways to relieve stress, etc. because the alternative would be taking drugs that can build a tolerance, sometimes build addiction, etc. Then other psychs argue, “Why were these drugs made if no one is going to use them? That’s what they’re there for!”  My psych at home is of the first kind and I’ve had it with a year or two of that.  Now my nerves are 100x worse, I’m NOT sleeping, and I WANT drugs.  I know I can find help if I can find the right doctor.  Of course this doctor is just for psych clearance for the transplant, but if I don’t get a full night of sleep for another night, I might just go crazy.

I’m about done with all the pre-testing, and now we get to wait.  The CCF transplant committee board will present my case tomorrow, they will release it to the Ohio state committee afterwards, and then they will send it to both of my insurance companies to verify payment.  Then I find out where I am on the list and buckle my seat belt.  

This is going to be a huge, bumpy ride.

In over our heads

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.