July 25, 2017

Transplant Talk: Evaluation

Am I the only one who starts cleaning one thing, gets distracted and then starts cleaning something else? Next thing you know, it looks like a tornado blew through the room! I am not a pack rat, but I keep a lot of things. So when I find them, I have to stop what I'm doing and take a trip down memory lane. And since I have been meaning to get back to sharing things other than my menus, here we go.

Today in a box filled with cards, photos and letters, I came across a folder marked TRANSPLANT EVAL. I should have just set it aside for a later time, but instead I sat down and opened it up. I also opened up a floodgate of emotions. Every single emotion.

March 1st 2010 - A letter from the insurance company reads: We reviewed a request to cover the transplant evaluation for a Liver Transplant for you. Based on the information submitted and your health benefit plan, we determined that the transplant evaluation is eligible for coverage.

I was both happy and scared out of my mind when I opened that letter and read it. I really was sick. My first thought was "Oh shit, I really need a liver transplant!" This meant that it was really happening. Up until then I was kinda hoping the doctors would one day tell me that it was all a big mistake.

Transplant Handbook

April 16th 2010
 *10:00 - 11:00 am: Transplant Education Class

That's right, they gave us transplant handbooks. The class was actually really good and full of information. And the book walks you through everything to expect from evaluation to recovery. The class was filled with a mix people. Different races and ages, but we all wore the same dazed look on our faces.

Liver Transplant

April 19th 2010
 * 7:00 - 8:00 am - Cardiology 2D Echo
 * 8:15 - 9:15 am - Cardiology Stress Test
 * 11:30 - 12: 30pm - Cardiology EKG
 * 12:30 - 1:00 pm - Cardiology Consult
 * 1:30 - 2:30 pm - Dietitian Consult
 * 2:30 - 3:30 pm - Social Worker Consult
 * 4:30 - 5:30 pm - Mammogram/Ultrasound

This was the longest day EVER! They added in a Nuclear Scan in after my Echo that lasted 2 hours. Two hours of laying on a table trying to stay still. But the good news was that my heart looked good. The dietitian was great. Although she told me if I ate canned tuna I should rinse it first. Yeah, I'd rather just not eat it. The social worker may have been the most blunt and upfront person I have ever talked to. We talked about everything, our marriage included. Up until that point I hadn't really thought about how hard this was on David. Eye opening for sure!

Liver Transplant Notes

April 20th 2010
 * 8:00 - 9:00 am - MRI
 * 9:00 - 10:00 am - PFT's w/ ABG
 * 10:00 11:00 am - X-rays
 * 3:00 - 4:45 am - Pap

At this point I was getting really comfortable in the MRI. So much that I snoozed and missed the instructions to hold my breath. I might have just been really tired. Want to know what the hardest part of day 2 was?  The PFT and ABG.  (Pulmonary Function Test with Arterial Blood Gas)  The Pulmonologist had me breathing and working my lungs then she took blood from an artery to check the oxygen and carbon dioxide in it. I swear the second she drew blood my ears got that hollow feeling and my eyes started rolling. I really hope I don't ever have to do that again!

UNOS liver waitlist

May 25th 2010 - A letter from the Transplant Clinic: Congratulations! You have been added to the UNOS liver waitlist.  Your official list date is 05/25/2010.

All those appointments crammed into 2 days was a little crazy. I started out a ball of nerves and when we got it the car after my last one I broke down in tears because I was just so exhausted. But it's over and done with now. Nothing but a pile of papers tucked away between other memories and packed away in the closet.

That day was the start of my now 7 year journey on the transplant wait list. I'm not sure if I was more afraid that they would say no and I wouldn't be listed or that they would say yes and I would actually be on the list. And I can't say how many times someone has listened to or read my story and asked  "where do you even begin?!" Right here! The process is draining, emotional and feels a little excessive but once it's done, you are one step closer. And then starts the waiting game.

But that is a whole other story. One I will have to get to later. Not just because it's 2am but also because some the mess I was supposed to clean up is still on my bed and if I plan on sleeping I'm going to have to put it all away. Or maybe just on my chair for now!

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