Liver
Infections and more surgery
I spent this last week in the hospital after some unexpected issues arose that landed me in the ER. What i thought was just a simple bug ended up being a bile duct blockage, which turned into a blood infection which led to sepsis. Because i needed more excitement in my life. Traveled via ambulance (we were supposed to fly but there was so much ice the plane literally could not take off) through a snow storm, from our local hospital to the transplant hospital 5 hours away where i ended up getting more surgery to remove the clots in my ducts as well as place stents. AND i'm on some pretty hard core antibiotics, in hospital and now traveling to our local hospital every other day for IV infusions plus recieving antibiotics at home. We caught it early, but early in transplant land still means there was a lot of damage done.
Being there gave me a ton of time to think about how patients are involved in their care, and how I was often seen as a difficult patient by the nurses because i wanted to be so involved (and said no to things like blood thinner injections when i knew i didn't need them and was adament about my tac being on time...) I had some amazing doctors and nurses, and some terrible ones. And i saw how flawed the medical system is at treating patients like people, and how it seems (maybe especially now with things so busy due to covid) like its just being shuffled through the line. And it reminded me just how passionate i am about being part of that change in healthcare, and supporting patients to advocate for themselves. And of course I mentioned Lyfebulb and TransplantLyfe to my doctor, who thinks this is a brilliant idea and says we need more patient innovators.
So here's to hoping the antibiotics work, using our voices to make change and being home for the holidays (hopefully to stay).
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Sending healing vibes and praying the antibiotics work!
Being a transplant patient is so high risk that we are always consider difficult but we know our bodies. I’m glad that you advocate for yourself!