9/25/2015
The Testing
I have spent all week going through testing:
Monday: 9-9
Tuesday: 8-3
Wednesday: 8-3
Thursday: 10-3
They do not let anything go untested. Here is an overview of fun things 💉😜💊😜 I have gone through...
37 Vials of Blood💉
Chest X-Rays
MRIs
- (which I had a mini panic attack - thankfully my awesome tech Raj coached me through the 90 minute session)
EKG
Echo
Drs Consults
- surgeons
- hematology (liver doc)
- anesthesiology
Donor Advocate
Insurance Advisor
Social Work (are we a fit healthy family - do I know what I am doing)
BioEthics (do i really know what i am doing? Do i really want to do this? Do i really know the risks I am putting my healthy body through?)
The Clinic does a really fabulous job of educating you on everything and making sure you understand what you are doing. They also make sure you are 100% healthy (which I guess is great peace of mind right?)
As I am going through this I am starting to realize what a huge commitment just the testing is for someone to go through to be just tested as a possible match. Depending on drs availability and candidates availability it could take 5-10 business days. The candidate would have to dedicate at least 4 full days of appointments to just test to see if they were a match.
The Insurance company will only cover one person to go through at a time, the cost is astronomical - appx $150K per person. There can only be one person going through at a time and until that person opts out another person cannot start testing.
So as I share with you we were thinking about getting the top 2-3 "paper candidates" tested to see if they were a match. So lets take the information that I just shared with you and play it out...
10 business days for 1 person to go through
3 potential candidates
30 business days
That would bring is to mid-November
So this brings a whole new perspective to the overwhelming response of volunteers we had who were interested in learning more...
If we had 70 people call in and 50% of them decided to move forward that would be 35 people at 10 business days of testing - that is 350 days and would span over a year and a half.
Can you believe that???? As I am processing this I just had no idea about any of this.
And of course we are working against the tick tock of the clock...
Here are somethings to keep in mind:
- Brodie is destined to get sicker as time goes and we need to get this transplant sooner than later! But what is our timeline?(That is one of the things we were going to discuss with the drs on friday... In their opinion what did we have to work with?)
- We are at home now but in am instant could be in the hospital if he deteriorates
- cold and flu season is coming up - if Brodie gets anything we have to wait 2 weeks for any procedure
- If I am a match - how long will it take to actually get the surgery scheduled?
- he is so healthy now and is in great condition for him to go in and be stable in surgery can we risk waiting any longer?
So many questions... Such a different perspective and the more we think of things the different opinions we form... So much to consider and all the while this chunky monkey happy little love nugget stares at us with huge gummy smiles and has the baby innocence that as an adult wouldn't we all pay large sums of money to enjoy? Just for a few minutes?
This week has been mentally exhausting for me as we think through these things - I have talked to parents who have donated organs to their children, I have talked to adult liver and kidney recipients. I have read sad stories and inspiring stories. What I have realized as I have spent days within the walls of the Cleveland Clinic Main Campus - is this is simply the best place we could be. With the best liver transplant care team. We are close so close my heart breaks for those families that travel in for care at this amazing place that is a 45 minute drive for me and my family. Its the land of CLE people and we need to be proud of this amazing hospital system and amazing talent we have right here.
