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Treatment for Coronary Total Occlusion(100% blockage)
Heart & Blood Health | Last Active: Nov 8, 2023 | Replies (45)Comment receiving replies
@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?