Since starting HeartValveSurgery.com nearly twenty years ago, I have learned a lot about the heart. However, it was not until I received this email from David Cattell, a heart valve patient in our community, that I became aware of an under-diagnosed condition known as cardiac amyloidosis. Many thanks to David for sharing his story and his research below.
David Readies for Aortic Valve Surgery
Here is the email that David sent to me:
Hi Adam, I hope this message finds you well. It has been a few months since our last communication, and I wanted to share an update on my health journey.
In February, 2024, my echocardiogram revealed that my aortic valve had progressed from moderate to severe stenosis. Following this, the interventional cardiologist at Mayo Clinic in Jacksonville initiated the TAVR suitability testing process with a diagnostic cardiac catheterization. This test identified two areas of stenosis in my coronary arteries, situated near a bifurcation, which were not suitable for stenting. Consequently, the heart team recommended a SAVR valve replacement along with a double bypass via median sternotomy.
On April 4th, Dr. Basar Sareyyupoglu performed the surgery, and I am pleased to report that it went exceptionally well. The surgical and ICU teams at Mayo Jacksonville are truly remarkable, operating like a well-oiled machine.
Although I had no known prior issues with atrial fibrillation, I requested Dr. Sareyyupoglu to attach an AtriClip device on the left atrial appendage (LAA) of my heart during the surgery, thanks to the awareness I gained about stroke risks from your educational interviews. He agreed, attached the AtriClip, excised the LAA, and sent the tissue to pathology. (For more, please see “Patient Alert: New Atrial Fibrillation Guidelines to Prevent Stroke in Heart Valve Patients.”)
The AtriClip device is attached externally to the heart to physically close the entrance to the LAA, which is a pouch like area where clots can form and, in some cases, they leave the pouch and go on to the brain, causing a stroke. The LAA does not have to be surgically removed, it can remain in place, with the AtriClip attached providing protection and the LAA atrophies over a period of six months or so. The surgeon can also decide to excise the LAA, leaving the AtriClip in place and sending the tissue to pathology for study and the issuance of their report.
David’s Unexpected Amyloidosis Diagnosis
This is where the story takes an unexpected turn. The surgical pathology department, using a Congo Red stain, discovered that I have amyloidosis. A condition that is still considered rare, but increasingly recognized to be under-diagnosed. They suspect it to be ATTR-CM Wildtype, but genetic testing is required to confirm it is not hereditary, which is crucial information for my adult children.
I recently underwent a TC-99m Technescan PYP nuclear medicine scan to assess the extent of amyloid deposits in my heart. The scan did not reveal any deposits. The doctors interpreted this as a positive outcome, indicating that the disease was identified under microscope so early that the amyloid fiber load is not yet high enough to be detected by the scan. I subsequently had an MRI, with contrast, which did show some areas of amyloidosis fibers deposited in the heart muscle, but the doctors are pleased with the early detection. Consequently, they have prescribed Tafamidis, a daily medication that acts as a stabilizer, binding transthyretin and preventing a significant portion of the protein breakdown and deposition of debris accumulating as fibers in the heart.