@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?
@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