Finally, we got an evaluation date!

You get the jist of the picture.  It is a little smushed. Oops.

2020 has been a crazy year.  EVERYONE will agree on that as everyone has had their own hardships to deal with.  One of our hardships was to get Ethan's health insurance to cover him going for evaluation.  When we started entertaining the idea in April that we were headed in the direction of transplant, we were told to choose a children's hospital.  The criteria given that we should base our choice on was reputation, proximity and to consider the allotment of hearts.  

We were originally told that each hospital gets their allotment of hearts within a 500 mile radius of the hospital.  Hospital's that were closer to the ocean had less of a pool of available hearts.  Due to reputation, location and the fact that Pittsburgh had a 500 mile radius of living people the entire circumference, it only seemed like an appropriate fit.

We moved forward and had the evaluation set up for the second week of July.  Wow! things were happening quick.  How do we go from March....things seem fine....to July,...on our way to hopefully get our kid on a transplant list.

Insurance denied us. Anger! Frustration! To be fair, I don’t know enough about the health insurance industry to completely understand the guidelines they have to follow. I just know that it wasn’t beneficial to me so I thought they (insurance company) were a bunch of greedy bastards. I felt like we were racing against the clock. 

Our appointment in Pittsburgh was cancelled. The cardiologists in Rochester urged us to file an appeal.  "Do we even have time for an appeal?" The cardiologist said that it was worth a shot and to consider that we would be having to drive to frequent appointments for at least a year.  It would be so much easier to drive 4 hours than 6 1/2 each time. 

We heard back by the end of July. Our appeal was denied which caused more disappointment and delay. Ethan's doctor reached out to a doctor on staff at the insurance company to do what’s called a “doctor to doctor” appeal which was denied on the spot.  We tried one last ditch effort with an appeal of a denial of the original appeal.   Did you follow that?  ‘Cause we were having trouble keeping track.

The insurance company argued that the service we were seeking was available within the insurance network and therefore they would not cover the same service out of network.  BLAH BLIDDY BLAH BLAH.....just a bunch of bullshit! Again, we were denied.  Enough was enough.  Fine, we will go to stupid NYC and subject ourselves to COVID and potentially cost insurance even more money.

Fine.  I am not happy about it but We will go to NYC.  Let's just move forward.  We have been stagnant since June. But the thought of navigating NYC with an immune compromised kid during a pandemic does NOT excite me.  What does that mean? It means No public transit, no subway, no train, no bus. That is scary.  If I want to drive, I can park my car to the tune of $35 - $65 per night. But who wants to drive there? The idea of it sounds terrifying.

I have got to say that the hospital is top notch. Ethan will be in the best hands.  They have a highly successful pediatric transplant center and team.  They are the leaders within the field. 

Sounds like fun to go to NYC right?  It's a cool city.  There are a lot of things to do and see.  However, because Ethan is immunocompromised, there will be no sight seeing or even going to a restaurant.  I looked up the current infection rate of Manhattan within the past week and there were over 3800 new cases.  There is an average of 550 -600 new cases a day. AAAHHHH!

So what is the bright side? 

I have my moments of anger, frustration, anxiety and worry. But I am always able to circle back to the bright side. My conversation with myself starts with “Patti, get your head out of your butt...”

So.....again....what is the bright side? The bright side is that we have a date for evaluation in a couple of weeks. It will be at a fantastic hospital with a highly experienced team of people. This will be a two day long series of appointments.  The transplant team will determine if Ethan is sick enough to get on the transplant waiting list.  Rochester doctors think he is.  Cross your fingers and toes.  

If Ethan gets on the transplant list before he turns 18 in February, his chances for getting a new heart are much better.  The benefit of getting listed as a pediatric patient is that even if he is listed and turns 18, his status won’t change. He will be able to remain on the pediatric list which is ideal.

We are moving forward. We are actually making progress. As Fredrick Douglass once said, “If there is no struggle, there is no progress”.  With that being said, we are due for some incredible progress soon. Hopefully it is only a few short weeks from now.