infusion port flushing resources

Posted by tiak @tiak, Nov 9, 2021

Hello! My young adult daughter just switched her care to Mayo. She has an infusion port due to a complicated chronic illness. We have struggled to get her connected to the right department to figure out how she can set up home health (?) to get the training and supplies to access and flush her port at home. Her primary specialties (GI & rheum) don't usually have patients with ports and they have struggled to get her referred to the right spot. She had a scheduled vascular surgery consult that the Mayo clinic canceled because " they thought she just had a question about getting an infusion." Has anyone figured out how to get the training and supplies for accessing theirs or their loved ones ports? I'd love any and all advice! Thanks!

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Lori, Volunteer Mentor | @loribmt | Nov 10, 2021

Hi @tiak it sounds like you’ve been left floundering with your daughter’s Central line management. Ports such as a Hickman can be left installed for quite some time without issue but it’s crucial for them to be flushed routinely with Heparin and saline, with the dressing changed weekly. I’d like to ask you a few questions if you don’t mind. It will help me get a better understanding of what’s going on.

How long has your daughter had her port? Who has maintained it to this point before switching to Mayo. Who ordered the port and why is it no longer being flushed?

Is it the GI and Rheumatologist at Mayo who haven’t been able to find a home care service or educational resource for you? If so, that surprises me as there is no shortage of medical social workers there who can help arrange home care through your daughter’s insurance and get her into the infusion center at whichever Mayo Campus you’re attending. Has she actually been seen at Mayo yet or are you between doctors?

With my ongoing experience with Mayo, all of my Hickman needs were taken care of in the infusion department at the Eisenberg. (Rochester) When I had was able to go home for shorter periods, my care was managed back home at my oncology infusion center. These arrangements were made by my nurse coordinator and later, by my hospital social worker. The social worker was integral in finding me a home care medical provider to teach me how to use a self-infuser for magnesium. I ended up not requiring the service but it was all handled through the hospital social worker.

Have you contacted your insurance company to see if they cover home instruction? There are usually customer service liaison representatives or case management workers who can help direct you with your daughter’s needs. Her situation would certainly warrant a case manager.

I found a link to Med view. A patient home care site. But you’d still need a prescription/orders for the Heparin rinses.
https://www.medviewsystems.com/central-line-dressing-change-demonstration-2/