By Bill Peckham
What spurred my Thanksgiving post was how I have heard freedom described and presented in various conversations with people in the business of providing dialysis, or in the business of supporting the businesses that provide dialysis. Their presentation of freedom wasn't fully describing my experience. When home hemodialysis is described (NxStage is the primary home hemodialysis machine in the US, the one I use, but I think this is true of the modality) or its advantages imagined, it is in very concrete ways e.g. you will be free to set your own schedule, you will be free to receive a high dose, you will be free to dialyze on a boat in the San Juan Islands (see 5/20-5/30 of May '08 archive). Those are all good things; things that I am happy to take advantage of, but those aren't profound freedoms. They are clinical and logistical improvements.
The freedom to struggle is the freedom to pursue happiness vs the freedom of resignation where happiness has to find you. It isn't easy to pursue happiness, especially when you have severe chronic kidney disease and are receiving only a portion of a healthy dose of dialysis. Getting just a portion of a healthy dose of dialysis leaves you unprepared for the pursuit, for the fight, for the struggle. In this under dialyzed state, resignation is the best option.
A high dose of dialysis gives me a chance. It does not give me a result. It gives me the freedom to struggle for the result that I want. It is still a struggle but I feel like I have a fair chance. For me, for now, I'm chasing relevance. I want to improve the provision of dialysis. Getting a proper dose of dialysis does not mean I'll succeed. It means I feel up for the chase. It's the freedom to try.
Bill:
I enjoyed your discussion on freedom. I believe you are right on for those of us on NxStage that we have achieved the freedom to struggle. Now that I'm doing the nocturnal I feel that I have gained more freedom during the day, better opportunity at better outcomes, though, I still struggle to regain some of my character that I lost when I lost my freedom of innocence. I now have the freedom to struggle toward recouping that character or developing new and perhaps even better character traits.
Warm regards, Erich
Posted by: Erich Ditschman | November 28, 2008 at 06:13 PM
Hi Bill,
I miss the "Sunday me blogs". Please restart these! It is great to know about "Bill, the dialyzor" as opposed to "Bill, the advocate" once in a way!
Kamal
Posted by: Kamal Shah | February 10, 2009 at 05:52 PM