New caregiver (bile duct cancer, liver transplant) : Need ER advice!

Posted by terribwyo @terribwyo, Jul 3 7:42am

I'm a fairly new caregiver for my husband, who was diagnosed in Dec with bile duct cancer along with PSC. We are staying in Jacksonville for chemo/radiation right now, and at the very end of his treatments my husband developed sepsis from an infection in his bile duct stents. He went downhill super fast, and I took him to the Mayo ER. One of the things now on my list is to ASK MORE QUESTIONS ABOUT THE ER!
I asked his medical team when we should go to the ER, and they said when his temp passed 102. That happened within an hour, so we drove to the ER. It was evening, possibly during a shift change, and it was a hot mess. First, I didn't know where to park so I followed signs and parked in a parking garage. It turned out to be a VERY LONG walk to the ER, and the only person we saw around us was the valet guy who was just leaving his shift. He asked if we needed help, but I thought he meant did I need help parking, so I said no thank you. By this time my husband was staggering and ping-ponging off the walls down the long hallway. He was leaning on me ( big guy, small wife) and I wasn't sure we would even get there! It was a very long way to the ER dept, with not a single person to be seen along the way, and I was at a loss for where to go and how to get help. Once we got there and saw some humans, they jumped into action, got him a wheelchair, etc. So I now have in my notes on my phone where (not) to park, how to go in the doors, etc. What questions do you all ask about ER trips, when/where to go, what to bring, etc? I need to be better prepared!

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lynnecp | @lynnecp | Jul 6 7:31am

I’m sorry you had this experience, I know first hand how frightening it is, since my husband had multiple bouts of sepsis as he awaited a liver transplant needed because of secondary cholangitis. He was transplanted at Mayo Jax, so I’m familiar with their procedures. We also spent a year waiting first in MA so this advice pertains to any ER. Now that you’ve had that experience here are my list of things to consider doing.

Get your doctors to have a sepsis flag added to his records. That will immediately pop up when you hit the ER and expedite triage. Sepsis symptoms can sometimes be subtle, you’ll recognize them because you know your husband’s symptoms well, but aren’t always obvious to a busy ER. Having that flag expedites testing.

Call your on-call primary team before heading to the ER to let them know you’re coming. They will send a member of the liver team down to the ER at some point.

Bring a list of his medications and the most recent antibiotics he was treated with and duration of treatment. If he starts to develop antibiotic resistance, make sure you have that list as well.

Take a test drive to the emergency entrance when you’re calm so you know how to get there.

All the other advice previously listed by others is also great and I would follow it. There may be a day when you need to send him by ambulance so keeping a short summary of underlying medical condition and medications to give to the EMTs is helpful.

Wishing you all the best.
Lynne

lynnecp | @lynnecp | Jul 6 7:35am

I forgot to mention, get a good blood pressure cuff for home. It was often my husband’s lowering BP and increased fatigue that tipped me off that an infection was brewing.

Lynne

terribwyo | @terribwyo | 2 days ago

In reply to @lynnecp "I’m sorry you had this experience, I know first hand how frightening it is, since my..." + (show)

@lynnecp Thank you!! It sounds like we need to talk! I have so so so many questions, and I’m trying not to freak myself out so I don’t freak out my husband. We are back in Jax for hopefully the last step before being listed, and my husband will have the exploratory laparoscopy tomorrow sometime. I have so many questions and I hate to bother everyone with them all…

lynnecp | @lynnecp | 2 days ago

In reply to @terribwyo "@lynnecp Thank you!! It sounds like we need to talk! I have so so so many..." + (show)

@terribwyo HI, we are traveling today back from a wedding, but would be happy to talk to you tomorrow. Give me a text tomorrow morning at 617-417-3692 to let me know your calling, and we’ll chat.

Becky, Volunteer Mentor | @becsbuddy | 1 day ago

In reply to @terribwyo "@lynnecp Thank you!! It sounds like we need to talk! I have so so so many..." + (show)

@terribwyo You certainly had a bad experience going to the ER. But, as a nurse and now with multiple trip to the ER, I can tell you ask all the questions you need. The staff may give off vibes of frustration, but they know that you, as the primary caregiver, need to ask questions. Try to write the questions and answers in a small notebook so you’ll always have them. No question is too small or too silly, just ask away.
If you have more questions about the hospital or ER, you can always ask me, especially if it’s about good care for your husband!