The Dells, "The Love We Had (Stays on My Mind)". The Dells. :-) Volume cranked up. Lately a subject keeps surfacing on the Facebook groups. More often than I'd like to see, people are asking what happens if they stop dialysis. People are seriously thinking about stopping dialysis. More people than I'd imagine. With more reasons than I'd imagine. People can't deal with having to do dialysis the rest of their lives. They don't have any support from family and friends...or they have no family. A significant number of people relay that their friends and family have abandoned them after the diagnosis of ESRD. Some people will never be eligible for a transplant due to health reasons. Some people are eligible for transplants, but they'd be responsible for 20% of the cost. Or the cost of drugs are prohibitive 3 years after the transplant. Some people are perpetually tired from dialysis treatments. Some are turned off by the succession of life threatening infections. Some have been on the transplant list for over 5 years and are just tired of waiting. The list goes on....
Aerosmith, "Crazy". No one judges. We can only relay experiences. The experiences run from what I went through before the ESRD diagnosis to family members who witnessed loved ones who stopped treatment. Other experiences include missing treatment for a week, 2 weeks, having being victims of hurricanes and other natural disasters where getting to a treatment location isn't possible. The experiences are different, but a high percentage are affected by fluid build up....in the lungs. This is not a pleasant experience. It clearly is not a peaceful way to die. :(
After 7, "Ready or Not". Love Kevon Edmonds voice. However there is a process if a patient wants to stop treatment. No one is pressured to continue treatment but the patient is given a lot of information to make an informed decision. A preferred method is to use palliative care, rather doing it yourself at home and probably being more miserable than you can even imagine. And yes on bad days I'm ready to pull the plug. I'm fortunate to have someone to pull me out of the black hole and I allow myself to be pulled out of the black hole. That's important, isn't it. Being allowed to be pulled back.
War, "All Day Music". Released in 1971.. Over 40 years ago. It stands the test of time! Support means a lot to dialysis patients. Dialysis and kidney disease is pretty daunting. We have a condition that can NEVER be cured. A kidney transplant is not a cure, it's just one method to keep us alive. Granted, some of us think it's better than being at the mercy of a machine....which is dependent on electricity, and being dependent on an assortment of technicians and nurses. Patients are aware that something can wrong during treatment and we'll die on the spot.
Bobby Womack, "Looking For a Love". RIP. So when members of the group ask about treatment we don't judge. The best we can do is support and offer options.
Signing off with Michael Jackson, "I Wanna Be Where You Are." I forgot to mention that on the train trip to Springfield, Illinois, the train followed Route 66. We passed some original diners and there were some Burma Shave signs. Your family were raid warriors if you remember the Burma Shave signs. :)
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