During each of the three Septembers after my husband's rapid fall into kidney failure in 2007, I have experienced "Anniversary Phenomenon." For me, it is a pit-of-the-stomach sense of personal vulnerability. The seasonal cues, the sky, the ambient temperature all scream "Your life can change in a minute to something far different than you'd ever expected."
So what have we learned from this experience so far?
- We've learned that End Stage Renal Disease impacts an individual in a global fashion. It isn't a one-organ disease. It impacts the heart, the blood, the bones, and the very lifespan of an individual.
- We've learned that dialysis - particularly Home Dialysis - is a lifeline that prolongs life and maximizes the quality of life for the patient AND family.
- We've learned that transplant is the ultimate therapy, but that there are too few kidneys available.
We've learned that resilience is a weapon that cannot be underestimated. Someday, I believe there will be a chemical assay for resilience; it will become a standard pre-op lab test!
We've learned that there are good people in health care: honest, straitforward people that want the best for you. And there are those that don't really care.
We've learned that advocacy starts at home - with patient and CarePartner, and branches out to include many support people, family members, and organizations. We're learned that no one understands like someone who has been through a similar journey.
So as Fall comes, I get reflective - philosophical. I'll never forget the first few days of Steve's critical diagnosis. It was a benchmark occasion, one that neither of us would have signed up for. But all in all, I think we've done as well as a couple could have done given our circumstances.. Have we had problems? The medical complications have been legion! Would I ever go back and do something different?
No, never. You find a soulmate, and the rest follows.
Linda Gromko, MD