Treatment for Coronary Total Occlusion(100% blockage)

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.

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

@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

@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!

@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!!!

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.

@caretakermom Have you considered using Mayo Clinic for your transplant center? They work from a team approach, and cardiologist and transplant team are all under one roof. Here is the website for the transplant centers https://www.mayoclinic.org/departments-centers/kidney-transplant/home/orc-20203197
Ginger

@gingerw, yes we have been trying to get a kidney transplant eval. We were due to go in for one this Dec, then found out hubb got cardiovascular disease at end of October. The transplant nurse said the blockages have to be cleared before he can go in for kidney transplant eval at Mayo.

@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!!!

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.