Written By: Adam Choose, Affected person Advocate, Creator & Web site Founder
Printed: September 25, 2024
Since beginning HeartValveSurgery.com almost twenty years in the past, I’ve discovered so much concerning the coronary heart. Nonetheless, it was not till I obtained this electronic mail from David Cattell, a coronary heart valve affected person in our group, that I discovered about an under-diagnosed situation generally known as cardiac amyloidosis. Many because of David for sharing his story and his analysis under.
David Readies for Aortic Valve Surgical procedure
Right here is the e-mail that David despatched to me:
Hello Adam, I hope this message finds you effectively. It has been a couple of months since our final communication, and I needed to share an replace on my well being journey.
In February, 2024, my echocardiogram revealed that my aortic valve had progressed from reasonable to extreme stenosis. Following this, the interventional heart specialist at Mayo Clinic in Jacksonville initiated the TAVR suitability testing course of with a diagnostic cardiac catheterization. This check recognized two areas of stenosis in my coronary arteries, located close to a bifurcation, which weren’t appropriate for stenting. Consequently, the guts group really useful a SAVR valve substitute together with a double bypass by way of median sternotomy.
On April 4th, Dr. Basar Sareyyupoglu carried out the surgical procedure, and I’m happy to report that it went exceptionally effectively. The surgical and ICU groups at Mayo Jacksonville are really outstanding, working like a well-oiled machine.
Though I had no recognized prior points with atrial fibrillation, I requested Dr. Sareyyupoglu to connect an AtriClip gadget on the left atrial appendage (LAA) of my coronary heart in the course of the surgical procedure, because of the attention I gained about stroke dangers out of your instructional interviews. He agreed, hooked up the AtriClip, excised the LAA, and despatched the tissue to pathology. (For extra, please see “Affected person Alert: New Atrial Fibrillation Tips to Forestall Stroke in Coronary heart Valve Sufferers.”)
The AtriClip gadget is hooked up externally to the guts to bodily shut the doorway to the LAA, which is a pouch like space the place clots can type and, in some instances, they depart the pouch and go on to the mind, inflicting a stroke. The LAA doesn’t must be surgically eliminated, it could possibly stay in place, with the AtriClip hooked up offering safety and the LAA atrophies over a interval of six months or so. The surgeon may also resolve to excise the LAA, leaving the AtriClip in place and sending the tissue to pathology for examine and the issuance of their report.
David’s Sudden Amyloidosis Analysis
That is the place the story takes an sudden flip. The surgical pathology division, utilizing a Congo Pink stain, found that I’ve amyloidosis. A situation that’s nonetheless thought-about uncommon, however more and more acknowledged to be under-diagnosed. They believe it to be ATTR-CM Wildtype, however genetic testing is required to verify it isn’t hereditary, which is essential info for my grownup kids.
I lately underwent a TC-99m Technescan PYP nuclear drugs scan to evaluate the extent of amyloid deposits in my coronary heart. The scan didn’t reveal any deposits. The medical doctors interpreted this as a constructive consequence, indicating that the illness was recognized below microscope so early that the amyloid fiber load just isn’t but excessive sufficient to be detected by the scan. I subsequently had an MRI, with distinction, which did present some areas of amyloidosis fibers deposited within the coronary heart muscle, however the medical doctors are happy with the early detection. Consequently, they’ve prescribed Tafamidis, a day by day treatment that acts as a stabilizer, binding transthyretin and stopping a good portion of the protein breakdown and deposition of particles accumulating as fibers within the coronary heart.
David’s Amyloidosis Analysis
Since my surgical procedure and amyloidosis prognosis, I’ve been researching the subject extensively. In line with the Nationwide Library of Medication, I’ve discovered that as much as 16% of transcatheter aortic valve substitute (TAVR) sufferers who first endure an MRI of the guts are discovered to have amyloidosis, but the cardiac MRI check is usually not a part of the usual workup.
Requesting the AtriClip and subsequent tissue evaluation offered me with very important info, permitting me to develop a plan to deal with amyloidosis, a illness I didn’t know I had. With out this step, over time I may be puzzled by less-than-optimal coronary heart operate because the amyloidosis worsened, and a few persistent shortness of breath upon exertion, regardless of receiving the brand new Edwards Inspiris Resilia Aortic Valve. One of many primary signs of each amyloidosis and aortic valve stenosis is shortness of breath.
ATTR-CM Wildtype sometimes impacts males of their 70s or 80s, with a normal onset age of 73-78. I’m 74. With out therapy, the life expectancy is about 4 years, usually leading to coronary heart failure as a result of stiff coronary heart situation. Key signs typically embody shortness of breath, a historical past of bilateral carpal tunnel syndrome, and/or lumbar spinal stenosis. It’s also necessary to notice that Black males are sometimes under-diagnosed resulting from systemic healthcare inequities. I imagine sufferers with a historical past of carpel tunnel and/or lumbar spinal stenosis ought to share their historical past with their interventional heart specialist and cardiac surgeon earlier than therapy. In my case, I’ve had bilateral carpal tunnel surgical procedures and an L5-S1 laminectomy. If acceptable, tissue samples could possibly be obtained throughout hand and/or again surgical procedure to examine for amyloidosis deposits.
Help for Amyloidosis Sufferers
I’ve related with instructional and help teams for amyloidosis. Beforehand, the first therapy concerned liver and coronary heart transplants, however latest developments in treatment have shifted this method. Ongoing analysis into amyloidosis is promising, with the Mayo Clinic in Rochester lately internet hosting a global convention with attendees from all around the world. Dr. Morie Gertz at Mayo Rochester is a number one determine on this area and may be a superb visitor to your future interviews.
I’m extremely lucky to be receiving care at Mayo Jacksonville and grateful that my surgeon, Dr. Basar Sareyyupoglu listened to my request for that one additional step that offered early detection and the chance to handle the amyloidosis, a uncommon and troublesome illness.
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Greatest,
David Cattell