Since my last note to you (January 25th), I’ve been going headlong into treatment for Polycystic Kidney Disease (PKD). Working a lighter schedule for the latter part of January through February allowed me to put my attention on my health as my primary focus. It has been time well spent as just a few nights ago I transitioned to nocturnal treatments by machine and I’m feeling that I’m beginning to get the hang of it. It has been an intensive time of treatment/training balanced with a tremendous outpouring of well wishes in the form of notes, cards, flowers and more. Your attentiveness has been greatly appreciated and I am certain, has made a difference in my overall well-being.
Once I began home treatments, it meant four treatments per day from early morning though the night, beginning again the next morning. I was also receiving a fair bit of boosters to help balance my system, including a loading dose of much needed iron administered intravenously over four weeks.
I am so grateful that for that first week my dear friend Elizabeth traveled down from London, Ontario to be with me. Her warmth, humor and cooking meals was a welcome gift. It was also a comfort to have her experience as a registered nurse with a lifetime of care with me as I stepped into my new normal.
The treatments are through a catheter in my lower abdomen and entail flushing the peritoneal cavity, filling the cavity with fluid (and allowing the fluid to “dwell” for some hours) and draining the fluid following the dwelling time. It is in the dwelling that dialysis does its work, pulling toxins from the blood in the way that the kidneys would were they functional. Though I am now set up to self-treat nightly on a machine (called a cycler), the initial treatment is designed to maximize my effectiveness of doing it manually should some occasion arise when electricity is not available. Between the hands-on training and the educational component, I think I’m now but a few credits shy of being a registered nephrologist!
The treatment/training phase was intensive and yet the lasting memory from this time is the loving, attentive care I’ve received from my health care team, the residents and neighbors here on Cattail Road, loving friends mostly at a distance and all of you.
During this process, I’ve adopted the process of labeling all of my treatment interactions/fluids and prescriptions ala Kori Tolbert and her Booster Jots. Bringing healing energy into every step of the process has been serving me well and I’m grateful to Kori for her inspiration.After a couple more weeks of at home treatment, I will begin the process of evaluation for a transplant and the active search for a healthy, living donor.
The specifics for compatibility are not fully known to me at this time ~ but stay tuned. I’ll let you know as my process unfolds. Please continue the love-notes and prayers for grace and ease ~ your demonstrations of love are sustaining.
In love and gratitude,