Help Zeph get Open Heart Surgery
Donation protected
On behalf of my cousin Zeph Vondenhuevel, dear friend, and loved artist, I reach out for support to help get her to California for life saving open heart surgery to repair a rare congenital heart defect that carries the risk of sudden cardiac death.
On June 10th, Zeph went for a CT Angiogram due to persistent chest pains, shortness of breath, fainting, and heart spasms. The findings revealed AORCA: anomalous origin of the right coronary artery. Due to the AORCA, her right coronary artery originates from the opposite sinus (left sinus of valsalva), and takes an interarterial course between her pulmonary artery and her aorta. This is referred to as a ‘malignant course of the right coronary artery’. The artery is also being compressed “almost down to a pinpoint” during its interarterial course as well as at the ostium. This means that her heart isn’t getting the oxygen it needs, leading to numerous debilitating symptoms and putting her at risk of sudden cardiac death.The imaging also revealed an atrial septal aneurysm, as well as a PFO (patent foramen ovale) which is a hole in the heart that never closed as an infant.
After diagnosis and weeks of research, she found a pediatric cardiothoracic surgeon located at Stanford hospital in Palo Alto California, that is experienced in repairing this rare defect, and who specializes in complex cases like hers. On August 7th, Zeph’s 35th birthday, they reviewed her case, put her on strict restrictions, and determined that the best route is a direct reimplantation of the anomalous coronary artery into its correct location. They will also be repairing the other two congenital heart defects.
Open heart surgery, scheduled on October 15th, with pre-op testing October 11th, will require a 12-14 day stay in California, depending on when she is released from the ICU and then subsequently, the hospital. She will be required to remain in California until 7 days Post-Op for her follow up appointment when the stitches from the chest tubes will be removed. From there, pending there are no complications, she will get the green light to fly back to Ohio.
Zeph has had a long and difficult medical journey these past 7 years and due to multiple diagnoses (Ehlers Danlos Syndrome, Chiari Malformation, Endometriosis, Gastroparesis/Dumping Syndrome, POTS, multiple organ prolapses, multiple surgical interventions) she is unfortunately barely surviving off of social security disability allowance. Your contribution will help ensure that she is able to not only get this life saving surgery but also allow her to recover without any added financial stress. We want this to be as easy as it can be for her.
Donations will go toward:
-around $2500 needed for the hotel, which is close to the hospital and has first floor handicap accessible rooms.
-around $1500 for three round trip tickets (her and two caretakers that will work in shifts to provide aftercare)
-around $1500 for the rental car and gas for the time out there, as well as gas for appointments upon her return (physical therapy, cardiac rehab, etc)
-around $600 food costs for the time out there and the couple weeks upon her return
-$100 for medication costs
-$300 for three sessions of deep tissue massage in the weeks following surgery. With Ehlers Danlos Syndrome, she experiences frequent dislocations and subluxations of joints, which causes tears in cartilage, as well as injuries to muscles, ligaments and tendons. We are hoping that a few appointments with an experienced masseuse will allow her to not be in as much pain following this major surgery. Unfortunately, this is something not covered by her insurance.
You can follow Zeph’s story on IG @sick.zeph.paints where she isn’t shy about sharing what it’s like living with illnesses that are progressively getting worse, as well as the art she creates from the pain of these experiences. She also has an Etsy set up where she is selling artwork to help provide financially. (ZephPaints) Please consider donating, buying some art, or simply sharing this link.
Thank you for your time.
-Alyssa Benavente
On June 10th, Zeph went for a CT Angiogram due to persistent chest pains, shortness of breath, fainting, and heart spasms. The findings revealed AORCA: anomalous origin of the right coronary artery. Due to the AORCA, her right coronary artery originates from the opposite sinus (left sinus of valsalva), and takes an interarterial course between her pulmonary artery and her aorta. This is referred to as a ‘malignant course of the right coronary artery’. The artery is also being compressed “almost down to a pinpoint” during its interarterial course as well as at the ostium. This means that her heart isn’t getting the oxygen it needs, leading to numerous debilitating symptoms and putting her at risk of sudden cardiac death.The imaging also revealed an atrial septal aneurysm, as well as a PFO (patent foramen ovale) which is a hole in the heart that never closed as an infant.
After diagnosis and weeks of research, she found a pediatric cardiothoracic surgeon located at Stanford hospital in Palo Alto California, that is experienced in repairing this rare defect, and who specializes in complex cases like hers. On August 7th, Zeph’s 35th birthday, they reviewed her case, put her on strict restrictions, and determined that the best route is a direct reimplantation of the anomalous coronary artery into its correct location. They will also be repairing the other two congenital heart defects.
Open heart surgery, scheduled on October 15th, with pre-op testing October 11th, will require a 12-14 day stay in California, depending on when she is released from the ICU and then subsequently, the hospital. She will be required to remain in California until 7 days Post-Op for her follow up appointment when the stitches from the chest tubes will be removed. From there, pending there are no complications, she will get the green light to fly back to Ohio.
Zeph has had a long and difficult medical journey these past 7 years and due to multiple diagnoses (Ehlers Danlos Syndrome, Chiari Malformation, Endometriosis, Gastroparesis/Dumping Syndrome, POTS, multiple organ prolapses, multiple surgical interventions) she is unfortunately barely surviving off of social security disability allowance. Your contribution will help ensure that she is able to not only get this life saving surgery but also allow her to recover without any added financial stress. We want this to be as easy as it can be for her.
Donations will go toward:
-around $2500 needed for the hotel, which is close to the hospital and has first floor handicap accessible rooms.
-around $1500 for three round trip tickets (her and two caretakers that will work in shifts to provide aftercare)
-around $1500 for the rental car and gas for the time out there, as well as gas for appointments upon her return (physical therapy, cardiac rehab, etc)
-around $600 food costs for the time out there and the couple weeks upon her return
-$100 for medication costs
-$300 for three sessions of deep tissue massage in the weeks following surgery. With Ehlers Danlos Syndrome, she experiences frequent dislocations and subluxations of joints, which causes tears in cartilage, as well as injuries to muscles, ligaments and tendons. We are hoping that a few appointments with an experienced masseuse will allow her to not be in as much pain following this major surgery. Unfortunately, this is something not covered by her insurance.
You can follow Zeph’s story on IG @sick.zeph.paints where she isn’t shy about sharing what it’s like living with illnesses that are progressively getting worse, as well as the art she creates from the pain of these experiences. She also has an Etsy set up where she is selling artwork to help provide financially. (ZephPaints) Please consider donating, buying some art, or simply sharing this link.
Thank you for your time.
-Alyssa Benavente
Organizer
Alyssa Benavente
Organizer
Sidney, OH