Andrea's Pectus Excavetum Surgery

Family and Friends,

I want to tell you a story about my amazing wife Andrea Arrieta.  She was born with a medical ailment known as Pectus Excavetum. 

Here is a picture of what Pectus Excaventum looks like:

https://www.mayoclinic.org/-/media/kcms/gbs/patient-consumer/images/2013/08/26/10/41/mcdc7_pectus_excavatum_jpg.jpg 

Pectus excavatum is a condition in which a person's breastbone is sunken into his or her chest. In severe cases, pectus excavatum can look as if the center of the chest has been scooped out, leaving a deep dent. In some people, the depth of the indentation worsens in early adolescence and can continue to worsen into adulthood. This is what Andrea is experiencing. 

She has lived with this condition her whole life, but starting in 2016 her health started to deteriorate. She started to suffer from chronic chest pain, and heart palpitations.

Severe cases of pectus excavatum can compress the heart and lungs or push the heart over to one side. If the depth of the breastbone indentation is severe, it may reduce the amount of room the lungs have to expand. This compression can also squeeze the heart, pushing it into the left side of the chest and reducing its ability to pump efficiently.

In September of 2016 Andrea was seen by a Cardiologist for testing related to recurring heart palpitations, and chest pain. Dr. Michael Maher determined based on this testing that Andrea's problems were being caused by severe Pectus Excavetum which was putting pressure on the right chamber of Andrea's heart.

Andrea was referred to Dr. Dawn Jaroszewski at the Mayo Clinic for further testing to determine the severity of Andrea's Pectus Excavetum, and to pursue a necessary surgical repair.  She was referred to Dr.  Jaroszewski for several reasons.

Most people with severe Pectus Excavetum have surgery to repair the condition when they are children.  Typically under the age of 18.

There are only a handful of surgeons located in the United States that can perform Pectus Excavetum surgery on an adult over the age of 40. Three (3) are at the Mayo Clinic in Phoenix. Dr. Jaroszewski is the most experienced (hundreds of procedures performed) and highest rated of those surgeons.

Andrea felt very fortunate to find out that the best surgeon for her condition was basically right in our back yard. We didn't feel as fortunate when we discovered that Dr. Jaroszewski, and in fact the entire Mayo Clinic, was not in our insurance network. We spent the better part of the next year getting a referral processed through Aetna and the Mayo Clinic so that Andrea could finally have the tests necessary to determine the severity of her Pectus Excavetum.

On November 14 & 15 of 2017 Andrea was tested at the Mayo Clinic. The tests at Mayo clinic were to determine Andre'a score on something known as the Haller Index. This is a simple mathematical way to assess and describe the chest cage on CT scan of the thorax. (see the picture above for reference).

A person with a normal chest has a Haller Index of 2.5. When the test is completed the Haller Index must be 3.25% or greater to be deemed "severe" and therefore  surgery is medically necessary for the repair.

Andrea's Haller Index is 5.71. 

So, her condition is so severe that her index is almost twice the standard used to determine if surgery is  necessary. Also, please understand that the higher the score basically describes how little room her heart and lungs have inside her chest to function. 

Her pain and her heart and lung issues will not improve in any way without the surgery. In fact, it's a given with the severity of her condition that her symptoms will continue to worsen.

The surgery consists of inserting  curved metal bars which are threaded under the depressed breastbone, to raise it into a more normal position. In Andre'a  case, more than one bar will be used. The bars will remain in her chest for three years.

Andrea is scheduled to have the surgery on 8/7/2018.

This is where we need your help. I mentioned before that Dr. Jaroszewski and the Mayo Clinic are not in our insurance network. Due to that fact we have to pay 100% of the surgical costs up front in order for her to have the surgery. BCBS of AZ might cover a small portion of the surgery but they reimburse the Member / Patient and not the Hospital or Doctor, hence Mayo is requiring that we have to pay 100% up front.

The estimate for the surgery without complications is 69,300 based on a new estimate we received from Mayo 6/7/2018. We are looking into every possible angle to try to come up with this money because Andrea can't have a normal life without it.

UPDATE 6/22/18: We petitioned Mayo to reduce the cost of the surgery by 50% to 34,650. Mayo hasn't approved it yet, but I believe based on the eligibility criteria that we will qualify for the reduced cost. I will post another update once Mayo has officially approved the reduction. I am confident enough that it will be approved to have lowered our fundraising goal to 34,650.

UPDATE 7/26/18: Pre-authorization with BCBS of AZ is officially approved!!! Also, I used my negotiating skills to get Mayo to allow Andrea to have the surgery and not pay any money up-front! This was a huge relief and now Andrea can focus on the surgery instead of worrying about whether it would happen or not.

I am being very selfish here also. I need Andrea to be around for longer. She is the love of my life and soul mate. She has made every day since I met her an amazing adventure. She has made me a better man.

Here is one of my favorite pictures of our family:



Please consider helping Andrea with this surgery we would be forever grateful.

Sincerely,

Phil Arrieta