Always have a primary care provider of record who will see you on short notice if you come up sick (an urgent care provider is not a primary care provider). Before you need to see them, have your records of vaccination and medical history, including a surgery report and labs, on file with them.
Carry an abbreviated history and vaccine list as a wallet card for quick reference in emergencies.
Always wear an emergency medical alert bracelet or necklace. Always. You never know and spleenlessness is really important for a trauma team to know if you’re unconscious and unable to tell them. There is aesthetically pleasing and handsome medical alert jewelry out there~it doesn’t have to be ugly stainless steel. Lauren’s Hope is one company I have a selection of styles from.
And get your flu vaccine every season. To do otherwise is tempting fate.
I’ve known lots of people without spleens who breeze through life without it affecting them. Triathletes, mothers, bikers.
My primary care provider has the exact same disorder that I do, and had his spleen out, too. Something like one in thirty thousand people out of the general population have spherocytosis, but there is a bit of a cluster where I live. It seems to be a genetically dominant trait, with about half of my extended family on the paternal side being affected. My physician has the same last name as a few of my distant family members. He doesn’t think he is related to them, but I suspect he just isn’t aware of the specific connection a few generations back.
The pneumonia and meningitis vaccinations are very important if you have no spleen. One of my cousins had an adult daughter (spleenless and with spherocytosis) who decided to go on a trip to St. Louis, MO. She was married and had two small children. She had been having a bad headache for several days, collapsed while on her trip, was taken to the hospital, and died of meningitis that same day. I don’t think she had been keeping up on her vaccinations. If she had seen her physician about the headache, they might have figured out what was going on.