YOUR HELP IS REQUESTED
DIALYSIS FOR THE BRAVE.
I have taken on a new role. A year ago my husband learned he had to begin dialysis. We knew in the back of our brains that this day would arrive. He had lost a kidney due to a massive medical emergency during a very simple medical procedure. (That is another story for another time). We did our due diligence, researching the various kinds of dialysis, discussing the options with his nephrologist. We leaned there are six types of dialysis and five can be done at home. Bob’s doctor encouraged the in home dialysis as a better option. It is less hard on the body, there is flexibility in scheduling and longevity is increased.
How could we refuse that!
NOW TO THE REST OF THE STORY.
And the beginning of my next book. THE LAST GIFT BOX, A PRESENT TO THOSE WHO FOLLOW ME, the first book I published, is your guide book to getting your life in order before you die or have to downsize. THE LAST GIFT BOX has led me on a new path and mission. I am determined to support people as they navigate the challenging decisions and discussions around death, organization of papers and the homes full of “stuff”. The book has sold 1800 copies and the workshops have introduced me to people with more ideas and requests for guidance. It is amazing.
My new book, outlined and needing my undivided attention,
is DOCTORS DON’T TELL YOU EVERYTHING.
Dialysis at home is tricky. First there is equipment, heavy equipment. And storage of medical supplies. And keeping track of inventory. And learning to be a phlebotomist, a medical tech, a medical equipment expert, comfortable with needles and blood, a plumber, an scheduler of doctors, deliveries and tests. The list goes on and on. The most important character traits you need are patience and acceptance, both of which ebb and flow with the tides of living.
This is not to be a whining paper - just a dose of reality. There is no course work in discussing reality in medical school. I am asking for your support. I am hoping some of you who have experienced medical challenges like dialysis will share with me your experiences. There are no guides for caregivers of patients with physically challenging diseases, be it catheters, drains, wound care, fistulas, ports. There are guides supporting caregivers and patients mental health but little discussion of the nitty-gritty of day to day living. I want to change that.
Together we can come up with concrete ways to navigate the new realities of life that include medical care provided by us at home.
I look forward to hearing from you. And I thank you in advance!