My Caregiver Journey
Each transplant story has similarities, but stands alone. Likewise, caregivers’ stories are unique. My journey is not different.

My husband and I met in early 2015, while attending a kidney disease support group. He had been on peritoneal dialysis since October 2011 [having been listed for transplant six months earlier], and I had recently been diagnosed with a very rare disease. I was struck by Bill’s positive attitude, and marveled at his stories of camping and road trips while on dialysis, even rigging up deep cycle batteries to power his machine so he could continue off-road adventures and charitable activities. We became comfortable talking to each other, and even though we lived almost 100 miles apart, he asked me to part of his caregiver team. By then it was a no-brainer for me, and our relationship continued to grow.

Towards the end of 2012, he had decided to double-list, being listed at his local transplant center, and then listed also at Scripps Institute in La Jolla, CA [about 90 miles south]. He continued to work full-time, and in fact never missed any work-time until time of the transplant. In August 2016, he suffered a bout of diverticulitis, and had to go on antibiotics when his access port became septic. During that 2 week period, he was called for a transplant, but had to pass it up. We went camping the following weekend, and had planned to go out again 2 weeks later.

When the transplant team called from Scripps on Thurs September 29, 2016, they advised he was third in line for a kidney. He went in to work the next day, and straightened up his area, leaving detailed notes for people “just in case”. We were to go camping, but decided he should stay close to home. We were both pretty nervous, and excited. Saturday morning, as he ate breakfast with a friend, the transplant team called and told him to stand-by, he was still #3, and go NPO [no food]. I wanted to start the drive down to him, but he wanted me to wait. At 6:30PM, as we were talking on the phone, the transplant team called and instructed him to head in, but it wasn’t a sure thing, yet. They would not wait for me to drive the 100 miles to him, then head another 90 miles south. So, he drove himself, called his daughter to meet him there, called his boss, and called his son. Since the surgery still wasn’t sure, as he was #3, he asked me to wait.

The first candidate was not able to be transplanted that night. That moved Bill up to #2, and both the second candidate and he got a new kidney that night, Saturday October 1, 2016. I drove down the next day; he was released on Tues. At that time, I had retired from full-time work due to my kidney disease. My part-time job was flexible, and my boss was very gracious. Bill’s daughter and I were co-caregivers, splitting the week up so she was there 3 days, I was there 4 days. I accompanied him to all appointments, taking copious notes, and asking lots of questions. We learned a lot about each other, and feel the time spent thrown together in recovery gave us a solid foundation for our relationship.

Tips I would give to other caregivers:
1. Accompany your patient to all appointment, pre- and post-transplant. Write down questions ahead of time. Don’t feel shy to ask them, and take notes. Ask for clarification on anything if you need to. Write down the patient’s vitals each appointment, and in between. Your patient may not hear all that is being said, or may miss something as they ponder a point.
2. If you are in a city you’re not used to, make friends with your new neighbors. You’ll need to lean on them in unexpected ways. We met a young couple living a floor above us, turned out she was a nurse, so if there was a problem, she was right there! Understand how to get to appointments, and have multiple routes figured out. Program important phone numbers and contacts into your phone.
3. It’s okay to remind your patient to take their meds, to get out and walk, to watch their diet. It’s a new way of life, and easy to forget, let alone be overwhelming. Even now, when I hear the alarm go off at 8am and 8pm, I make sure Bill has his meds. When we went camping 6 weeks after transplant, we timed it with an appointment. After the dr visit, that night he realized he had not brought his meds along, so we drove h***-bent back home, trailer in tow. I had to push him to go walking at first, even if it was just around the parking lot. Now he averages 10,000+ steps a day.
4. Be grateful for the process. It can be scary, yes. While you are dealing with this gift of a second chance, another family may be grieving a great loss in theirs. It’s okay to feel conflicting emotions. If need be, reach out to the transplant social worker, or to us here on Mayo Connect. You are not meant to bear this undertaking alone.
5. Your patient has a new-to-them organ. There may be personality changes. Be patient. Remember to take care of yourself, too.
Ginger