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| BJ Sanders shares her life story on this virtual walk, raising awareness of valve-in-valve TAVR |
As you walk along with BJ, she begins with her life at age 12. Before your walk is over, she will tell you that today she is counted among those with a valve-in-valve TAVR and a grateful, happy heart!
1966 - A hint of what is to come
At age twelve my connective tissue disorder was emerging in the form of a severe scoliosis requiring six years of orthotics and finally culminating in a surgical procedure, Harrington Rod spinal fusion to straighten my spine at age twenty three. Despite the scoliosis I led a very active and healthy lifestyle!
1976 - Emerging labile hypertension
This is sometimes associated with Bicuspid Aortic Valve (BAV).
1981-1986 - Premature deliveries of my children
Once again connective tissue issues appeared in my three pregnancies. As a result of undiagnosed and misunderstood heart issues, I was placed on long periods of mandatory bed rest. Despite the bed rest, I had three premature deliveries.
1998 – No worries!
Despite multiple connective tissue concerns I had a very full and active life free of worry.
However, at this stage in my life I developed a prolapsed uterus, urinary incontinence and a rectocele all requiring repairs.
2000 – Searching for answers
Arrhythmias and visual concerns led to two echocardiograms, which the internist said were of no concern! Due to financial/insurance concerns, I requested my own copy of my medical records and noted that my aorta appeared to have expanded between echoes. I no longer trusted my internist!
Thus I began my long arduous Bicuspid Aortic Valve (BAV) and Thoracic AscendingAortic Aneurysm (TAAA) journey.
Over a span of two plus years, I searched earnestly for accurate knowledge to lead me to a physician with medical expertise in BAV and TAAA. There were many obstacles along the way, but the stars aligned the day I met Arlys Velebir in cyberspace. This eventually led to my introduction to Dr. Sharo Raissi, MD and the subsequent formation of the Bicuspid Aortic Foundation.
2002 – Watching and waiting
I entered into the watch and wait period under Dr. Raissi’s expert care. My quest for answers and understanding of my ascending aortic aneurysm and BAV were always met and my fears melted away knowing that I had found the expertise and compassionate care for which I had longed. HOPE had overcome FEAR!
Thirteen years into the BAV journey brought unexpected chest pain associated with a significant size increase in my ascending aorta. Dr. Sharo Raissi performed a TAAA reconstruction, a bovine artificial aortic valve replacement due to calcification of my BAV, and closed the left atrial appendage via a clip. Closing the left atrial appendage eliminates it as a potential source of embolic stroke in the future.
When I awoke from the surgery I distinctly remember Dr. Raissi saying, “In 10-15 years when this valve needs replacing, Transcatheter Aortic Valve Replacement (TAVR) should be available in the United States!” He also explained that he put in the largest artificial aortic valve possible for me; so, I could have a future TAVR! At that moment I was not interested in 10-15 years from then. I had truly been given a new lease on life! After all, I no longer had an ascending aortic aneurysm and I had a brand new healthy aortic valve! I felt indestructible! I believed with all of my being that my new valve would last at least 15 years +! A TAVR seemed like light years away! I didn’t even bother to ask what the acronym stood for!
What I didn’t understand was that data is beginning to reveal that a new tissue surgical aortic valve replacement has a 20% chance of failure within the first 5 years!
In the Valve-in-Valve International Data registry, 20% of patients had their surgical aortic valves replaced within the 5 years prior to the TAVR. It is a bell-shaped curve. Some patients with transcatheter aortic valves degenerate earlier, and that is true also for those with the surgical valve - Dr. Raj Makkar Medscape interview March 25, 2019.
2016 - The honeymoon is over so soon???
The fall of 2016 brought the beginning of the end to my honeymoon with my “new” aortic valve. My scan showed the first signs of calcification!
2017 – Just “lazy”!!
2017 revealed further immobility of the “new” valve.
I discounted my increasing fatigue, believing I was just “lazy”.
I was unable to clean my house and became short of breath when making my bed. I avoided steps whenever possible. I developed a rectal prolapse with complications requiring surgery and a subsequent surgical procedure to repair another rectocele.
2018 brought frequent episodes of angina requiring nitroglycerin, increasing SOB with simple activities, debilitating fatigue. I was in complete “DENIAL” still believing my “new” valve could not possibly be the problem. Dr. Raissi spoke to me by phone and said, “BJ, I am worried about you”. I said, “Don’t worry”. He quickly responded,” I do worry”! I finally heard his concern and boarded a plane.
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| Happiness after TAVR with my brave, loving husband and son! |
Flying from the East Coast to LA, I began to have difficulty breathing. Once again I was in complete “DENIAL”! Once my son and I arrived in LA we walked from our hotel to the Tar Pit Museum in a heat wave! I became faint and needed assistance to sit to prevent me from falling! “DENIAL”! My breathing was so compromised that I required extra pillows during the CT scan to breathe. The CT revealed severe aortic stenosis.
Dr. Raissi called me following my CT scan, and said I should call go immediately to see a TAVR specialist, Dr. Raj Makkar, MD!
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| No more severe stenosis! Sweet heart sounds after valve-in-valve TAVR |
Disbelief, shock and denial continued in my head… I requested that I visit Dr. Raissi first. He firmly said, “BJ you need an immediate AVR and surgery is too risky with your co-morbitities. Go to Dr. Makkar’s office at Cedar Sinai.” Mercifully, Dr. Makkar was in town and not traveling, and I was given priority and worked into their extremely busy schedule.
07-11-2018 – From grieving over one valve to welcoming another
After extensive testing, insurance approval and TAVR education, reality finally started to sink into my being. To me it was no longer the loss of my “new” surgical valve. I began to sense how fortunate I was to have the stars align once again with a life-saving procedure.
I was especially grateful for the Sentinel Cerebral Protection System that Dr. Raj Makkar utilizes to reduce stroke risk during a TAVR procedure. One study shows that Sentinel CPS captured visible embolic debris headed toward the brain in 99% of TAVR cases. Studies show more than a 60% reduction in TAVR-related strokes when Sentinel CPS was used noted by the “Society of NeuroInterventional Surgery” and “American Association of Neurological Surgeons”.
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| I can breathe! |
07-13-2018 – After valve-in-valve TAVR “I can breathe….!”
7:00 a.m.-TAVR procedure with the expert hands of Dr. Raj Makkar and his amazing staff!
10:00 a.m.- I awoke to my family and Arlys Velebir by my side!
My first words were, “ I can breathe lying flat!”
07-14-2018 – Out of the hospital 30 hours later!
I was discharged approximately 30 hours from my TAVR once again feeling as if I had a new lease on life!!! I was at the right place at the right time and my stars aligned…truly a miracle!
09-08-2019 – BJ today - Very grateful!!
I become more GRATEFUL each day I have to live. I no longer focus on how long my valve will last or “what ifs”.
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| BJ (with Dr Makkar) after TAVR Happy heart, happy life!!! |
As I continue to discover new ways to care for my body, I am finding improved health, vigor and contentment. I no longer eat processed foods and am limiting my carbohydrates which have resulted in a 35 pound weight loss. I was an insulin dependent and insulin resistant diabetic prior to making these changes. I no longer need insulin after 17 years!
I try to live each day by the words Dr. Makkar blessed me with upon my discharge.
He was very encouraging …
He gifted me with these words….
"Go and Live!…Go to the Beach!…
Travel!…Have Fun!…Live your Life!...
Happy Life!…Happy Heart!!!”
From one BAVer/TAD to another:
Unlike me,
please be prompt to share your symptoms
with your trusted physician
or confidant
and
resist the temptation of DENIAL….
May your stars align on your BAV or TAD journey,
all the days of your life!
~ BJ Sanders
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