Transplant Journey

For a long time, I’ve had this nagging feeling in the back of my mind that maybe I’ll never get a transplant and be stuck on permanent dialysis. I look at other people’s transplant experience and it seems so easy. Even at the Kidney Disease Support Group, the leader found out he had kidney failure, sent email out to church group, got 11 offers for donation, and even though he was 74 years old, he received a transplant pretty quickly. Likewise, several other people in the group said they were able to get a transplant shortly after going on dialysis and everything worked out fine.

Then I look back at my journey and it seems like I’m cursed or something. I wrote a long post early on about the last few years of kidney failure. Here’s a summary of transplant expectations that never came to be:

• I was under monthly care of a nephrologist for three years prior do dialysis yet despite all the appointments, tests, and medication, my kidney function kept dropping from eGFR of 50 down to <10.
• Signed up with transplant center at St. Joseph Hospital. Everything was going well until sister was mysteriously rejected by the social worker for non-medical reasons. She believe my sister didn’t really want to donate so she rejected her as a donor.
• We then transferred our transplant wait list time to UCLA with help from a doctor friend. At UCLA, things looked great until the CT scan found a shadow in my sister’s kidney. Not willing to risk cancer, UCLA told us to wait one year. I had to start hemodialysis dialysis while we waited.
• Meanwhile, my high school friend offered to donate. He turned out to be a blood type and 3/6 antigen match. UCLA rejects him due to slightly elevated blood pressure. He then spends the next few years improving his health and eating habits to lose weight and lower his blood pressure. Waiting continues…
• Sister goes back to UCLA after 12 months with new scans showing no sign of cancer. Instead, UCLA asks for a kidney biopsy. During the biopsy procedure, they missed getting a tissue sample. When we asked for a second biopsy, they said no and asked us to wait another 24 months.
• After about 20 months of hemodialysis, the dialysis center and nephrologist really wants me to get a fistula. Instead, I opt for peritoneal dialysis. After surgery and six months of dialysis at home, we determine PD to be a failure and return to hemodialysis. During that time, I was not getting enough dialysis and end up losing my remaining kidney function.
• After persisting for several years, my friend manages to get UCLA’s approval as donor so everyone goes back for more interviews and tests. As we were scheduling the last set of tests, I go to the ER and end up with a quadruple bypass surgery, which puts my transplant on hold.
• After surgery, my friend still wants to donate so UCLA said they would clear me after I complete the cardiac rehab program. I start program in mid-January and is delayed by fistula surgery. Right now, I’m only 14/24 sessions complete.
• When it looks like I’m making good progress and working towards a transplant within months, coronavirus pandemic hits and everything shuts down in the US. I need to call the rehab center to see if they’re still open but with the directive to hospital to focus on respiratory emergencies, I don’t know if UCLA is even working on kidney transplants at this time. Also it doesn’t seem like the right time to start taking immunosupressive drugs required post-transplant surgery.

Along this journey, I kept feeling like a live donor transplant was always imminent. However, each time I take a step forward, some obstacle would appear and block the transplant. I was always worried about either my donor’s health or my health deteriorating before the transplant happened but who would have imagined a global pandemic halting the process? I feel like I have zero control over my future and will be stuck on dialysis the rest of my short miserable life.