Cuellar Family - Hilario‘s Heart Transplant

In 2019, Hilario had a cyst in his jaw that completely ate away his jaw bone. Surgery was done to remove the cyst & bone graft was put in. The bone graft didn’t fully take so a series of revisions were done into 2020. During the last revision surgery, Hilario contracted an infection that spread to his heart. 

In June 2020, Hilario was diagnosed as being in congestive heart failure with an ejection fraction rate of only 20%. He spent 3 weeks in the hospital & was finally released with a cardiac life vest. 

In September 2020, Hilario had a bi-ventricular pacemaker & defibrillator placed.

Less than 2 weeks after this surgery he had a final oral surgery to remove the last 3 wisdom teeth & 1 molar since the other wisdom teeth were forming cysts & started eating away at the roots of the molars nearby. More bone graft was placed, this time on the right side of his mouth. 

Unfortunately all of this was not enough to heal his heart so we were told Hilario will need a heart transplant. We were transferred to the University Hospital where all heart transplants are done in Colorado & immediately started the heart transplant work up. 

On this day they drew 30 vials of blood!

Here is Hilario's current line up of daily medications to keep him alive!

November 2020, We were forced to pay for an oxygen concentrator out of pocket because insurance was considered out of network & the in-network providers were unable to get the kind he needed due to COVID. On the left is the new concentrator, on the right is the one insurance supplies but Hilario is unable to carry the weight of it:

December 2020, Hilario's transplant work up consisted of the following tests & consults:

Day 1:

-Pulmonary Function Testing

-LVAD consult

-Palliative Care consult

-VO2 Treadmill Testing

Day 2:

-Abdominal Ultrasound

-Cardiothoracic Consult

-Right Heart Catheterization Surgery with EKG

Day 3:

-Echo

-Upper Vascular Scan

-Lower Vascular Scan

-Physical Therapy Consult

-Transplant Pharmacist Consult

-Dietary Consult

-Social Worker Consult

-Transplant Financial Consult

-Transplant Nurse Coordinator Consult

Feb 2021, we needed to buy a second oxygen concentrator in order to be able to travel to medical appointments overnight & hook up to his CPAP machine. This is the amount of medical equipment we now travel with:

May 2021, Hilario repeated his echo only to find out he has a right to left shunt which signifies a hole in his heart called a Patent Foramen Ovale with Atrial Septal Aneurysm. 

June 2021, Hilario had a cardiac CT to confirm & help the doctors decide the next step.

 

Hilario’s Surgeon has decided it’s not safe to close the hole in his heart unless he throws a clot & has a stroke. So he will continue to stay in deferment status for a heart transplant. 

October 2021, we got Hilario a Garmin Watch to check his oxygen levels while sleeping because Hilario continues to have zero energy during the day. The watch showed this consistently:

 

So we reached out to his pulmonologist with our concerns. 

December 2021, the Pulmonologist did his own testing because, “the smart watches (Apple watch, Garmin, Fitbit, etc.) aren’t accurate for medical diagnosis.” 

Everyone BUT Hilario gets Covid!

March 2022, we got partial results back showing Hilario DOES need more oxygen at night, so now they’ve raised him to 3 liters at night! 

July 2002 after switching pulmonologists, It is decided Hilario needs to be switched to a BIPAP machine.

 

We've maxed out every credit card on food, hotels & gas getting to & from Denver for all of Hilario's care (140 miles).

We have 4 children at home & Hilario requires around the clock care. Not to mention everyone is on strict quarantine to keep Hilario alive. 

During this time, we would be incredibly grateful for any help we can get. Whatever is donated above & beyond what the family needs will be donated to the next family in need as God’s blessing. 

Thank you to all! 

#Heart4Hilario