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!

@caretakermom

@thankful, I hope you had a great thanksgiving!! Here is the update. Husband's cardiologist will attempt to fix the CTO by installing a stent. As mentioned in my earlier comment, the success rate is a mere 30% and our cardiologist does not recommend a bypass because it would be "overkill". Naturally, Mayo Clinic kidney transplant wants all cardiovascular disease fixed before they would even consider the patient for a kidney evaluation. So as it stands now, we will have our cardiologist perform an angioplasty and see what happens. If he can clear the blockage then my husband is good to go for kidney transplant eval at Mayo Az. If not, we will seek a second opinion at Mayo Az. I have made a appointment for the third week of Feb 2021, to consult with a Mayo Cardiologist. I was told the consulting cardiologist is NOT the interventive cardiologist who will perform the procedure. Dr. John Lynch has been assigned to my husband. Is this the same Dr. Lynch that you saw?
We were also told that NO visitors are allowed in the hospital because of COVID. The patient has to be tested for COVID at Mayo and must arrive 2 days prior to appointment. The first 2 days will be testing for COVID and if negative, we can proceed with appointment. So that means I will not be able to go to the appointment with husband. I did, however, request the initial consultation be done by video. And I sure hope Dr. Lynch can schedule all tests on the same day so that we do not have to stay too long in Az. My husband still works full time and very difficult for him to take time off. Since his kidney failure in Nov 2018, he has had to take much time off for surgeries and various doctor appointments and he is running out of PTOs at work. Most of procedures and surgeries he has had in the past 2 years are all for transplant clearances and have burned thru his PTOs!! I very much hope that our UCLA cardiologist is successful in fixing the CTO. If not, then I sincerely hope that Mayo can help resolve the CTO without having to resort to doing a bypass, which our current cardiologist says he DOES NOT recommend bypass for this kind of blockage. Cardiologist says husband can live a long life without having to fix the CTO, because the collateral blood vessels are supplying adequate blood supply(EF is 65%)Would be interesting to hear what Mayo has to say, if we need to seek a second opinion.

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@caretakermom– Anna, so great to hear your news and Yes Dr. John Lynch is the Cardiologist I saw for all my testing. He is excellent!
Very good communicator and clearly has a heart for what he does! All the best to you & your husband. Jim@thankful

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@gingerw

@caretakermom Anna, I have read this entire discussion, and first off, want to commend you for knowing details so thoroughly about your husband's situation. Being a caregiver and partner to a dialysis patient can be frustrating and stressful for you both! What kind of dialysis is your husband doing, and how long has he been on it? If you haven't been there, a great website is UNOS.org for real facts and info on transplant.

Regarding your husband working full time and on dialysis. My husband was, too, before his transplant. He was on peritoneal dialysis for 5.5 years. He used disability as he recovered from the transplant, for the 3 month recovery. If your husband is running out of PTO days, perhaps his employer has a program where fellow employees can donate hours of their time-off bank to help him out? My last employer did that, it was anonymous, and a real supportive way to show someone you care. He could also look into FMLA if that might fit his situation.

Every transplant center has their own requirements and preferences. Don't be afraid to double list. UCLA and Mayo AZ. Yes, you have to go through two different evaluations, but they might be able to use the same test results for both places. My husband was listed at Loma Linda University, using Kaiser Permanente insurance, then decided decided to double-list at Scripps Institute in La Jolla because their wait list was shorter. Scripps was his transplant center.

You have gotten some stellar advice from @feelingthankful and it will serve you and your husband well, to carefully consider all the possibilities. Make a list if you need to, pros and cons of places, procedures, etc. based on what you are told and educated on. Check with your insurance about coverage [a very important factor!] Have your husband speak with his HR dept about his situation, so they are aware.

I would be honored to answer whatever I can, for you!
Ginger

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@gingerw, Ginger. Thank you for responding. My husbanding started off doing PD when he was diagnosed with ESRD. Unfortunately his diaphragm was leaky and the PD fluid leaked into the pleural sacs of his lungs. This caused all kinds of problem in the end because husband had to have a thoracotomy to check for "gunk" that developed as a result of the PD fluid and the residue from having had pneumonia. UCLA had tried to remove the "gunk" with VATS(less invasive) but unfortunately the gunk had been there too long and they had to resort to invasive surgery to clean it out, took samples and be sure it was not cancerous. This was the beginning of this year.

Right before the thoracotomy, my husband got a CVC as his vascular access because he had to stop doing PD. Immediately after he was released from hospital(I'm skipping over a lot of stuff because there were complications when they started giving him blood thinner, eventually leading up to a midnight emergency surgery of the same area!!), we trained to do Home Hemodialysis(HHD) which is what we are doing now. A couple of months ago, my husband got a vein mapping in preparation to get a fistula but unfortunately he had to get his angioplasty done first. And I hope he can get his fistula soon while we wait for a second opinion from Mayo regarding his CTO.

Yes my husband has already been evaluated by UCLA and UCSD but because of his change in health status, he needs to go back to get reevaluated at UCLA and UCSD.

The most concerning issue we are facing now is, who can help fix the CTO(coronary total occlusion) using minimally invasive procedure. Because the CTO is long, installing a stent may not be possible and they may have to resort to invasive surgery, which is something we want to avoid if possible. It's a very difficult decision to make because on the one hand, getting a kidney transplant is wonderful BUT not at the expense of having to do a bypass. A bypass is a scary thing to even think about because there are definitely risks, and for someone with ESRD i would think the risks are even higher. Factor in the bypass is not even recommended by husband's cardiologist who also said the risks of having a bypass is not worth it. No bypass means no transplant listing at Mayo-we chose Mayo because waitline is half as long as California!

Is Scripps part of UCSD? How is your husband doing with his transplanted kidney? Did he receive his transplant from Scripps? How long ago was he transplanted and how long was the wait?

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At 79, I have had another coronary artery stented, a circumflex coronary artery branching from the left main coronary artery. My mild heart attack in 2016 at age 75, was from the right coronary artery, occluded about 80-90% with placque. The next one, the Left Anterior Descending coronary artery may receive a bypass vein graft in 2021 instead of a stent. Another condition, a variant angina, known as Prinzmetal, results from coronary artery spasms (CAS) which seem to increase in frequency and pain with stents. I'm glad to be alive with adequate oxygen and nutrients bathing my heart muscle cells (cardiomyocytes), but managing the unpredictable coronary artery spasms is like living with foot cramps in my heart! The daily use of managed doses of nitroglycerin and a calcium channel blocker and other health-boosting medications keeps me moving as I hope for more exercise with the limitations of our pandemic. I did appreciate the prescribed cardiac physical therapy classes after the first heart attack, based on a curriculum by the American Heart Association, provided by a team of a cardiology nurse, an electrophysiologist, and a dietician for six weeks. I lost my fear of exercising, and have a healthier diet.

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@caretakermom

@gingerw, Ginger. Thank you for responding. My husbanding started off doing PD when he was diagnosed with ESRD. Unfortunately his diaphragm was leaky and the PD fluid leaked into the pleural sacs of his lungs. This caused all kinds of problem in the end because husband had to have a thoracotomy to check for "gunk" that developed as a result of the PD fluid and the residue from having had pneumonia. UCLA had tried to remove the "gunk" with VATS(less invasive) but unfortunately the gunk had been there too long and they had to resort to invasive surgery to clean it out, took samples and be sure it was not cancerous. This was the beginning of this year.

Right before the thoracotomy, my husband got a CVC as his vascular access because he had to stop doing PD. Immediately after he was released from hospital(I'm skipping over a lot of stuff because there were complications when they started giving him blood thinner, eventually leading up to a midnight emergency surgery of the same area!!), we trained to do Home Hemodialysis(HHD) which is what we are doing now. A couple of months ago, my husband got a vein mapping in preparation to get a fistula but unfortunately he had to get his angioplasty done first. And I hope he can get his fistula soon while we wait for a second opinion from Mayo regarding his CTO.

Yes my husband has already been evaluated by UCLA and UCSD but because of his change in health status, he needs to go back to get reevaluated at UCLA and UCSD.

The most concerning issue we are facing now is, who can help fix the CTO(coronary total occlusion) using minimally invasive procedure. Because the CTO is long, installing a stent may not be possible and they may have to resort to invasive surgery, which is something we want to avoid if possible. It's a very difficult decision to make because on the one hand, getting a kidney transplant is wonderful BUT not at the expense of having to do a bypass. A bypass is a scary thing to even think about because there are definitely risks, and for someone with ESRD i would think the risks are even higher. Factor in the bypass is not even recommended by husband's cardiologist who also said the risks of having a bypass is not worth it. No bypass means no transplant listing at Mayo-we chose Mayo because waitline is half as long as California!

Is Scripps part of UCSD? How is your husband doing with his transplanted kidney? Did he receive his transplant from Scripps? How long ago was he transplanted and how long was the wait?

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@caretakermom You may find out from your medical team that the heart surgery is not optimal right now because of your husband's kidney issues. It creates quite a catch-22, doesn't it? I also have a rare kidney disease, and am Stage 4. I cannot be transplanted due to that autoimmune disease that would attack a new kidney, and I am a cancer patient, too. I cannot tolerate a surgical procedure. UCLA, Cedars-Sinai, and Keck USC all have outstanding doctors, with dedicated cardiology centers. CTO is considered a highly technical procedure, and you want to be comfortable with your choice of medical professionals, whether there in LA or at Mayo.

There are many people who live well on dialysis, for many years. Some opt to not consider transplant, for their own reasons. Home hemodialysis, since it is done everyday, helps keep your body functioning closer to normal.

Scripps Green Hospital in La Jolla/Torrey Pines is not affiliated with UC San Diego. My husband had his transplant at Scripps, driving down from San Gabriel Valley when the call came on October1, 2016. He had a deceased donor, who was 25 yrs younger than his 61 yrs at time of transplant. He was on dialysis for 5.5 years, after skating by with declining kidney function for 10 years before that. His kidney disease was due to high blood pressure. He has done remarkably well since then, and retired this year from full time work.
Ginger

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@caretakermom Hi and welcome. I'm not sure how I can help with the medical issues but it appears you have many already great advice from others. I was mentioned by @colleenyoung as receiving my heart transplant at Mayo Phoenix plus I'm up there every month for treatments for some issues with viruses (not covid) and get a ivig treatment every 5 weeks. Now unfortunately I just.received the follow message from the CEO of the Arizona location

• Our facilities will be closed to visitors as of Monday, November 23. We know how important having loved ones nearby is during your health care journey. Yet, we believe this is an important step in maintaining the safest possible health care environment during active community spread of the COVID-19 virus.

• We are reducing the number of newly scheduled surgeries for the remainder of the year to prepare for an expected rise in COVID-related hospitalizations. However, at this time we are not planning to defer appointments or procedures that are currently scheduled.

• Virtual appointments remain available for many specialties and circumstances, if you prefer. To determine if your existing appointment can be transitioned to a virtual one please contact your care team, using secure messaging through Patient Online Services, or by phone.

• Approved face coverings will be required at all times while at Mayo Clinic. Bandanas, vented masks and gaiter-style masks are not permitted. Allow 15 additional minutes for screening as you arrive for an appointment.​​​​​​​​​​​​​​

• If you are experiencing COVID-like symptoms, or you believe you have had an exposure, please contact your primary care physician for guidance on next steps. Testing is now widely available in our community, including at Mayo Clinic.

We greatly appreciate your trust in the care we provide to you. Your health and safety remain our top priority. Stay abreast of the latest COVID-19 updates and research at NewsNetwork.MayoClinic.org.

So that's what i know as of this week and it looks like its only until the end of the year. But like.others have said I have had a very good experience with the Doctors and Staff here in Arizona and they have always been paient centered. If you have any other questions about the area please let me know. We have a veriety of Hotels around the area that are fairly close some even walking distance.
Have a Blessed Day
Dana

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@gingerw

@caretakermom You may find out from your medical team that the heart surgery is not optimal right now because of your husband's kidney issues. It creates quite a catch-22, doesn't it? I also have a rare kidney disease, and am Stage 4. I cannot be transplanted due to that autoimmune disease that would attack a new kidney, and I am a cancer patient, too. I cannot tolerate a surgical procedure. UCLA, Cedars-Sinai, and Keck USC all have outstanding doctors, with dedicated cardiology centers. CTO is considered a highly technical procedure, and you want to be comfortable with your choice of medical professionals, whether there in LA or at Mayo.

There are many people who live well on dialysis, for many years. Some opt to not consider transplant, for their own reasons. Home hemodialysis, since it is done everyday, helps keep your body functioning closer to normal.

Scripps Green Hospital in La Jolla/Torrey Pines is not affiliated with UC San Diego. My husband had his transplant at Scripps, driving down from San Gabriel Valley when the call came on October1, 2016. He had a deceased donor, who was 25 yrs younger than his 61 yrs at time of transplant. He was on dialysis for 5.5 years, after skating by with declining kidney function for 10 years before that. His kidney disease was due to high blood pressure. He has done remarkably well since then, and retired this year from full time work.
Ginger

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@gingerw, I grew up in the San Gabriel Valley as well but presently living in Ventura County California. Per the UCLA cardiologist, bypass is not recommended for hubby because doctor says it's usually not recommended for hubby's situation. Has nothing to do with my husband being ESRD. To me it sounds like the doctor is saying he would NOT recommend a bypass for anyone in a situation where the patient is asymptomatic, collateral arteries are supplying adequate blood flood, and heart muscle not affected. A bypass in this situation would be an "overkill" and the risks greatly outweighs the gains.
There are of course tradeoffs for getting a kidney transplant. The main one being quality of life. Hubby still wants a kidney transplant but I'm just thinking of the worst case that can happen which would be the only way to fix his blockage is a bypass. Hopefully we will know more when we consult with Mayo cardiologist and hear what options are available, hopefully they can put in a stent.
May I ask how long your husband waited for his kidney transplant at Scripps? UCLA and UCSD told us 7-10 years for hubby's blood type.

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Do you have any options to get the mayo cardiologist or the mayo kidney doctor to “clear” his heart and the blockage for a kidney transplant (be willing to do kidney without fixing heart). As is. (If they agree with the other cardiologist it’s not a risk). This would seem possibly the best solution if they do think it is not a risk. However if they do think it is a risk then let them fix it. I know you have talked to a nurse but can somebody else help you get those answers such as the doctors.

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@caretakermom

@gingerw, I grew up in the San Gabriel Valley as well but presently living in Ventura County California. Per the UCLA cardiologist, bypass is not recommended for hubby because doctor says it's usually not recommended for hubby's situation. Has nothing to do with my husband being ESRD. To me it sounds like the doctor is saying he would NOT recommend a bypass for anyone in a situation where the patient is asymptomatic, collateral arteries are supplying adequate blood flood, and heart muscle not affected. A bypass in this situation would be an "overkill" and the risks greatly outweighs the gains.
There are of course tradeoffs for getting a kidney transplant. The main one being quality of life. Hubby still wants a kidney transplant but I'm just thinking of the worst case that can happen which would be the only way to fix his blockage is a bypass. Hopefully we will know more when we consult with Mayo cardiologist and hear what options are available, hopefully they can put in a stent.
May I ask how long your husband waited for his kidney transplant at Scripps? UCLA and UCSD told us 7-10 years for hubby's blood type.

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Caretakermom:

I can only offer my own situation that you might find similar. I was diagnosed with 100% blockage in my LAD, which is the main inlet to the heart. The doctors then gave less than a 20% chance of success due to the time that passed (which I understood was a few years). They said I had a heart attack years ago but I never felt or knew it.

Per my understanding, my body grown capillaries to supply the heart with adequate blood flow. Since the chance for success was so low for open heart surgery (and time for recuperation so long) I elected not to have the surgery, a decision with which my doctor agreed.

I exercised at home (with an old piece of equipment known as a gazelle) and later joined a gym. That was over 25 years ago, and I’m still around to talk about it.

I hope that information was useful to you and your decisions, and wish you and your husband all the best and will be in prayer for your family.

Howard

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@caretakermom

@gingerw, I grew up in the San Gabriel Valley as well but presently living in Ventura County California. Per the UCLA cardiologist, bypass is not recommended for hubby because doctor says it's usually not recommended for hubby's situation. Has nothing to do with my husband being ESRD. To me it sounds like the doctor is saying he would NOT recommend a bypass for anyone in a situation where the patient is asymptomatic, collateral arteries are supplying adequate blood flood, and heart muscle not affected. A bypass in this situation would be an "overkill" and the risks greatly outweighs the gains.
There are of course tradeoffs for getting a kidney transplant. The main one being quality of life. Hubby still wants a kidney transplant but I'm just thinking of the worst case that can happen which would be the only way to fix his blockage is a bypass. Hopefully we will know more when we consult with Mayo cardiologist and hear what options are available, hopefully they can put in a stent.
May I ask how long your husband waited for his kidney transplant at Scripps? UCLA and UCSD told us 7-10 years for hubby's blood type.

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@caretakermom My husband was told 7-10 years at Loma Linda, 5-7 years at Scripps, due to different procurement areas. He was transplanted after 5.5 years on dialysis. His time while listed at Loma Linda was used on the Scripps list also; that is, he did not start over. He basically said "whoever calls first", and a patient can be listed at multiple places.

Again, each transplant center has its own criteria to meet. Where one may say his occlusion issue is not a problem for the transplant procedure, another one may say differently. Here is a website that will show you transplant centers based on criteria you enter, plus contact numbers: https://www.txmultilisting.com/wait.htm?gclid=EAIaIQobChMIo8PQhPyq7QIVFz2tBh0XfAD8EAAYAiAAEgJeavD_BwE

What is the cause of your husband's kidney disease? That might play a factor, also. I lived in Ventura/Oxnard area for over 15 years, so I know that area well!

I invite you to take a look at the transplants discussion group https://connect.mayoclinic.org/group/transplants/ for some conversations you might find informative, and likewise, the kidney and bladder discussion group, where I "hang out" a lot! https://connect.mayoclinic.org/group/kidney-conditions/

How are you doing today?
Ginger

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@feelingthankful

Do you have any options to get the mayo cardiologist or the mayo kidney doctor to “clear” his heart and the blockage for a kidney transplant (be willing to do kidney without fixing heart). As is. (If they agree with the other cardiologist it’s not a risk). This would seem possibly the best solution if they do think it is not a risk. However if they do think it is a risk then let them fix it. I know you have talked to a nurse but can somebody else help you get those answers such as the doctors.

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@feelingthankful, we have a virtual consultation in February with a Mayo cardiologist. According to the transplant team, all cardiovascular disease has to be fixed before one is qualified for kidney transplant. Even if the Mayo cardiologist clears hubby's heart, we still have the kidney transplant team cardiologist to deal with. They also have to approve. If it comes to doing a bypass or not, my gut feeling tells me not to do it, if not necessary, even it means hubby has to forgo a kidney transplant!

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@howardm

Caretakermom:

I can only offer my own situation that you might find similar. I was diagnosed with 100% blockage in my LAD, which is the main inlet to the heart. The doctors then gave less than a 20% chance of success due to the time that passed (which I understood was a few years). They said I had a heart attack years ago but I never felt or knew it.

Per my understanding, my body grown capillaries to supply the heart with adequate blood flow. Since the chance for success was so low for open heart surgery (and time for recuperation so long) I elected not to have the surgery, a decision with which my doctor agreed.

I exercised at home (with an old piece of equipment known as a gazelle) and later joined a gym. That was over 25 years ago, and I’m still around to talk about it.

I hope that information was useful to you and your decisions, and wish you and your husband all the best and will be in prayer for your family.

Howard

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@howardm, so glad I finally found someone who can relate to our issue. Where the 100% blockage is the artery on the back of the heart that comes around to the front right, this is one of the 3 main arteries of the heart. I don't know what the technical name of that is but dr says there are collateral blood vessels that formed and they are supplying adequate blood flow. Like yourself, hub is asymptomatic and has never had a heart attack(or maybe had one but didn't notice). The low success rate of 30% is on stent installation procedure called PCI, peripheral coronary intervention. Open heart surgery, single bypass, would fix the blockage but UCLA cardiologist doesn't recommend bypass for this kind of blockage situation. So he says he would clear hub if hubby maintains free from coronary diseases up until he gets his transplant(which may take years because of long waiting list). But that is UCLA. Mayo is a different story. Will find out more when we consult with a Mayo cardiologist early next year. Hopefully, Mayo can help fix the blockage without doing open heart surgery. Doing a bypass sounds too much of an overkill and in the end, the heart trumps the kidney!!!

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@caretakermom

@feelingthankful, we have a virtual consultation in February with a Mayo cardiologist. According to the transplant team, all cardiovascular disease has to be fixed before one is qualified for kidney transplant. Even if the Mayo cardiologist clears hubby's heart, we still have the kidney transplant team cardiologist to deal with. They also have to approve. If it comes to doing a bypass or not, my gut feeling tells me not to do it, if not necessary, even it means hubby has to forgo a kidney transplant!

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My point and question is, when you say: “ Even if the Mayo cardiologist clears hubby's heart, we still have the kidney transplant team cardiologist to deal with”

What if this kidney team cardiologist is a “friendly” and you can convince him/her based on what the UCLA doc is saying, or he/she already agrees when reviewing the basic facts? Won’t that be the fastest path?

Can you try to get this in front of that person to find out? Wondering if that may be the quickest path if that person agrees. However I am just guessing but wondering if a reason you are not taking that path now.

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