Treatment for Coronary Total Occlusion(100% blockage)

Posted by caretakermom @caretakermom, Nov 2, 2020

Has anyone been treated for Coronary Total Occulsion(CTO) ? As I understand it, only a few centers in the U.S. have qualified staff to perform the procedure. Is this treatment available at any of the Mayo Clinics(Az, Fl, Mn)? Would like to hear thoughts from those who have considered or have had this treatment. Thank you!

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@feelingthankful

Ok feeling empathy for you. Good luck. One last idea from a possibly over persistent person: Possibly try to contact the cardiologist (or ask your cardiologist to do) on the kidney team if you think it may help.

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Will definitely ask Mayo cardiologist for guidance looking forward to consultation in Feb next year. Thank you you have given me a lot to think about!!! I'm glad I joined this forum.

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@caretakermom

@feelingthankful, everything at Mayo has to be done thru formal processes. We cannot convince the Mayo transplant team of anything. The pre kidney transplant nurse says we would have to go thru the whole process of first consulting with a Mayo cardiologist, who can give an assessment of what needs to be done in order for hubby to be eligible for transplant evaluation. Hopefully the assessment matches our local cardiologist's.
My thinking is if we were to pursue kidney transplant at Mayo, and the plan of care proposed by Mayo is reasonable(no invasive surgery), then I think we would get the CTO taken care of at Mayo so that hubby can eventually get on the Mayo kidney waiting list. Otherwise, we go back to UCLA where we know hubby can get clearance without having to address the CTO, but have to wait twice as long for a kidney transplant. Was told 5 years at Mayo and 10 in Calif!!!

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@caretakermom There are living donors and donor chains to consider, not just cadaver donors. Have you looked in to a living donor, put it out there to relatives and friends that you are looking? If your concern is the wait time, this may be a path to pursue while you are waiting!
Ginger

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@caretakermom

@feelingthankful, everything at Mayo has to be done thru formal processes. We cannot convince the Mayo transplant team of anything. The pre kidney transplant nurse says we would have to go thru the whole process of first consulting with a Mayo cardiologist, who can give an assessment of what needs to be done in order for hubby to be eligible for transplant evaluation. Hopefully the assessment matches our local cardiologist's.
My thinking is if we were to pursue kidney transplant at Mayo, and the plan of care proposed by Mayo is reasonable(no invasive surgery), then I think we would get the CTO taken care of at Mayo so that hubby can eventually get on the Mayo kidney waiting list. Otherwise, we go back to UCLA where we know hubby can get clearance without having to address the CTO, but have to wait twice as long for a kidney transplant. Was told 5 years at Mayo and 10 in Calif!!!

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@caretakermom Hi again and one more positive thing I might mention about Phoenix is that when I was going thru the process i was told and have heard this from others that based on availability there have been some who were on waiting lists actually move to the Phoenix area from Rochester because of the higher percentage of getting an organ quicker. Probally based mostly on Hearts but maybe the timeframe for other organs is higher also. Maybe another thing to add to your decision checklist.
Dana

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@thankful

@caretakermom- Anna, Hello. Since my HA was the result of finding out about my occlusion the stent was placed here at our local hospital in the Willamette Valley of OR. Because of the damage to my heart I had issues with my EF (Ejection Fraction) and had both an Echo as well as a nuclear stress test a year afterwards that really didn't show any changes (collateral blood vessels developing).
I decided to go to the AZ. Mayo for a battery of tests which was led by a great cardiologist named Dr. Lynch. He was amazing!!
The day ended with a Stress Echo which provided the best info he felt for him to determine my actual EF.
Prior to that last Echo back in Corvallis I had gone back to my normal workout regime of 3x a week in an effort to boost my EF, but had been told after my 2nd Echo that there was no real change. After going through the tests at AZ. Mayo in consultation with Dr. Lynch he told me that he felt my EF was more closer to 45-47% rather than the 30% I was being told here. I have felt great after receiving the stent and a new lease on life, but the psychological feeling of what I called "damaged goods" weighed on me and I was determined to do all I could do to reverse that. My visit to the AZ. Mayo put me on that path and I hope you reach out to them.
Mayo provides superior care in so many ways that I will continue to go there for 2nd opinions if needed. For now I remain in great health and am Thankful!
Jim @thankful

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Jim, I had a stent placed in the Left Circumflex Artery and in the process my cardiologist found the Right Coronary Artery is 100% blocked near the entrance from the Aorta. The rest of the artery is being supplied by collaterals. Since then, I have been going to Mayo here in Scottsdale Arizona for follow ups. You mentioned Dr. Lynch but do you know the name of the cardiologist who performs CTO PCI procedures here at Mayo?

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@gfrmayopatient

Jim, I had a stent placed in the Left Circumflex Artery and in the process my cardiologist found the Right Coronary Artery is 100% blocked near the entrance from the Aorta. The rest of the artery is being supplied by collaterals. Since then, I have been going to Mayo here in Scottsdale Arizona for follow ups. You mentioned Dr. Lynch but do you know the name of the cardiologist who performs CTO PCI procedures here at Mayo?

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Also, has anyone had a CTO done in Mayo AZ? If so, how did it go and what Dr did you use? Thanks in advance. George

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