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.
Take care,
Linda Gromko, MD
This is so beautifully written Dr Gromko, I so empathize with you and your husband.
ReplyDeletewith love, Adelle
Adelle, thank you for posting your comment. You are so very kind to lend your support. Thank you, Linda
ReplyDeleteDear Linda,
ReplyDeleteMy husband and I know exactly the feeling you describe. And the more episodes of crisis experienced the more frequent that awful "Anniversary Phenomenon" occurs. We hardly have a month or holiday left now that doesn't remind us of some incident...not to mention the PTSD we feel every time we get near a hospital door.
But we try to focus on and do as many life affirming things together as possible given the constraints of our situation. It helps balance the yuck. Celebrate the good in each day, even when it is a small thing.
Sending love, hugs, and strength,
Miriam
Hi Miriam,
ReplyDeleteThank you for your comments. You are so right to focus on the life affirming things...another "kidney friend" said she focuses on the "good times between crises."
But I think Anniversary Phenomenon is powerful stuff. In my medical practice, when someone is feeling unusually depressed, fatigued, etc., I'll often ask, "Was there something difficult that happened to you around this time of year?" I'm surprised at how often the answer is yes - and also, at how effective our minds are at glossing it over.
In my experience, remembering and honoring a "heavy" event is useful. I even recommend doing private observations in honor of the event and the resilience we had in getting through, e.g. a private donation to the food bank, something in celebration of our own fortitude.
Take care, Miriam. Linda
What a lovely post!! You are going through so much......
ReplyDelete