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

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

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

@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…

@terribwyo HI, we are traveling today back from a wedding, but would be happy to talk to you tomorrow.

@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!

Well... now you've been through that experience you know what not to do.
As far as I have experienced it's perfectly acceptable to stop in your car with your sick spouse at the emergency entrance or very close to it , get the patient help and taken in , then get the car parking sorted. You made that so hard for yourself, before you head off to emergency have a plan of where you need to be ,what you need and how you're going to do it.
Lastly if you're offered help,thats your ray of sunshine ,smile and accept it* big husband small wife* 😊

I too have PSC. I am sorry you had to go through all of that. You have read all the best advice. At this point, the only thing I can add is that my hepatologist is from a major experimental hospital and is the one who decides who gets transplants and who does not. My last ERCP showed signs of me being high risk for cholangiocarcinoma (bile duct cancer), and he said, "This would catapult you to the top of the transplant list," if that helps you any. Everyone's PSC journey is different.
Best wishes to you and your husband!!!

@janieg, welcome. You may wish to join some of the PSC-related discussions: https://connect.mayoclinic.org/search/discussions/

How are you doing? What symptoms of PSC are you managing?

How is your husband doing now? A friend of mine got a whipple procedure. I wish i knew about it . My sister passed a year ago this month after 8 years with bile duct cancer.

@becsbuddy a good notebook is critical, not too small, like steno pad (hmmm do they still have steno pads) like maybe 6x8. Right now I'm caregiving 3, my 93 yo friend (hospice), my 81 yo cousin (nursing home) and my 90 yo friend (congestive heart failure). My notebook has separate sections. First page of each is critical info, birthdate (hospitals go by dob, and a few times I've forgotten year) primary doctor+tel, ss#, list of medications, list of allergies, Then as things happen record the date, time and name of RN or MD. Especially sitting bedside, need this to tell other med staff, who said what. I'm not a professional caregiver, just found keeping a notebook VERY IMPORTANT, not scraps of paper.....At hospital bedside, also keep track of what medications are being given, pills, shots, IV and Dr/RN visits with vital signs, bp, p, temp with time/date/staff name.......all the best, it's a tough road....take care of yourself first, if you're not in good shape you won't be a good caregiver