My story is still being written, but it begins here.
May the Fourth
May the fourth, 2018, was the first day of my retirement!
My husband, Jeff, and I made the move from San Francisco to Jeff's home state of Oregon. I worked for so many years, often 2 or even 3 jobs, to get to the moment when we could make our dreams a reality. When we could finally get a house in a small rural town with help from family — in order to be closer to help my aging mother-in-law — and start our retirement. We had amazing plans to travel to all the roadside attractions (the odder, the better!), visiting with friends and family, all the while keeping our eyes peeled for any signs of Bigfoot along the way!
Warp speed to retirement!
FULL STOP!
I’ve been diagnosed with late-stage kidney disease — and am now on dialysis daily. All our dreams of our retired life are abruptly curtailed.
I need help.
I need a new kidney.
Danger!
Danger!
May the fourth be with you!
Now before you think, “I’m not interested in donating” and stop reading—hear me out.
The BIG THING
I need your help with is getting the word out.
You really never know who may hear the call and step up to help me out!
I would be so grateful if you would consider sharing my message by posting something on social media and/or mentioning my story to people in passing — or sharing it with your book club meeting or church group or anything. You just never know who will decide they want to help me. And, thanks to Paired Kidney Exchanges, donors and recipients of different blood types can be matched, so even if that person is not a match for me it could lead to a chain of donations that would end with me getting a kidney.
Thank you!
We arrived at our new little house in Oregon, and I established all our new services for the house and ourselves. We were all set and so excited! During my first visit to our new doctor, he ran some tests that showed my kidney function was abnormally low. He referred me to a Nephrologist who added several new medications to my routine. Now it’s became more critical than ever for me to control my diabetes and weight as they are two of the large contributors to my Chronic Kidney Disease (CKD). A change in diet was called for that put a damper on my love of cooking and baking. For me creating in the kitchen was therapeutic. I enjoyed nothing more than cooking, eating, and sharing my creations with my family and friends. This was just the first of many setbacks in retirement.
I thought when I retired everything
would be easier.
Resume personal log: Stardate October 2019
Back to my story...
Now I needed to embrace new ways of cooking that were less “crowd pleasing” and that required more effort to understand beyond blending flavors and presentation. It was more about eliminating and limiting many things that I felt made cooking and eating a joy. I met that challenge head on by hosting Friday night dinners with the family that provided more vegetarian and pescatarian options. As that was becoming the new “norm,” I was also finding myself having more frequent doctor visits. It was becoming the pattern that each new visit came with a referral to a new specialist. I was referred to a pulmonologist who prescribed a CPAP machine for sleep apnea troubles (cue Darth Vader sound effect!). My medications were adjusted to control my blood pressure.
It seemed in little over a year I had a new full-time job:
going to the doctors.
Heartache and isolation
Doctor visits became virtual and maintaining a healthy routine with exercise and diet took on yet another level of challenges. Like so many families at the time, isolation was really putting a strain on ours. It was almost hard to believe we only lived ten minutes apart from each other. We tried to stay connected virtually, even offering some online tutoring time with our niece who had begun fifth grade in virtual school classes. After some pandemic restrictions had been eased off, we tried to have some “Family Time” with a few outdoor socially distanced coffee mornings and brunches. Everyone was feeling an uneasy strain and awkwardness.
July brought immense heartache as we unexpectedly lost our niece. That was a heavy blow to the family and really had an overwhelming impact on an already challenging year. The grief was made even more unbearable by the fact that we were unable to gather as a family and console each other.
The Autumn of 2020 seemed to be much colder for me.
I just couldn’t get warm enough.
It turns out I was anemic due to low iron levels.
This was remediated with a few iron infusions. Cold and flu season was coming on strong (Ho Ho Ho!). Though we managed to get through that with just a few sniffles, soon the rumblings of Covid-19 were starting. This began a period of fear and concern for me (and for so many others!). Doctors were warning that my health conditions made me more vulnerable than most. As news of the pandemic spread, my fear and caution became more visceral (Shields up!). We hunkered down and braced for impact.
I was more than happy to comply with sheltering in place. I layered on blankets and was glued to the TV. Soon the impact of how much we were cut off from everything and everyone became crushing.
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I hoped it would pass soon and things would get back to normal.
Fire!
Still coping with our recent loss and trying to return to some new level of normalcy.
Jeff and I were returning from one of my first in-person doctor visits in over a year.
We seemed to be driving parallel to a huge billowing cloud of smoke that was headed in the direction of our home. What we didn’t know at the time was this was the beginning of the Almeda fire that would see the destruction of almost 50% of our little town of Talent and the neighboring area.
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We were displaced for a week but were thankful and relieved to find that we had a home to return to. However, the aftermath was another difficult setback for us all. It seemed like these trials were getting harder and harder. The grief, isolation and tragedy of the fire became a bit too much for my mother-in-law. It brought on a depression that preceded a diagnosis of brain cancer. Jeff was faced with becoming his mother’s full-time caregiver.
At the same time...
I was also receiving more referrals for a kidney transplant program with OHSU and told to prepare for eventual dialysis. This meant a new Cardiologist, an interview with the OHSU Transplant Team and meetings with a surgeon who would insert a PD port for home dialysis. (Now I know my blood type is O+.) Things were becoming even more stressful as Jeff was also becoming my primary caregiver and support person and we discovered he is not eligible to become a living donor.
Echoes of the past
Much of what I’m going through now echoes the journey of my sister, Kanani, who experienced her own kidney failure nearly two decades ago. She received a kidney transplant from our amazing youngest sister, Patty, in 2006, which extended her life another 10 years. I’ve tried to stay ahead of my condition to the best of my ability. There is only so much I, alone, can do in this race against time and the ineveitable decline of my kidney function. With each new doctor, each new limitation, I continue to do what I can to remain hopeful and prepare for whatever lies ahead for me. More tests, a biopsy and minor surgery will involve recovery times and the need for more and more support from Jeff.
A new hope...
...in the form of a successful kidney transplant, would allow me to regain some freedom and ability to travel unencumbered by medical equipment and ever-increasing health issues. It would allow me to boldly go on with the rest of my journey through life, and maybe even find Bigfoot.
