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5-FU infusing too fast
LVL999
6 Posts

Hi,

my dad came home with the 46hour infuser yesterday, and I feel it has been infusing too fast. The booklet the hospital gave me shows 3 timelines on how big the ball should be for 12, 24, and 36 hours.
Its been only 26 hours so far and its looking like the 36hour example.
I called the home care nurse because its the weekend and the medical daycare isnt open and she said she doesn’t know anything about the infusing rate??!She said she’s only been given orders to have it disconnected at 46hours.. and told me to call the oncologist… that means I have to wait the entire weekend

by the looks of it, I think the infusing will finish in less than 40hours.. probably even less than 36hours. has anyone expereienced this? He doesnt have any side effects so far, and feels fine.

7 Replies
supersu
1098 Posts

@LVL999

no idea how that pump works either, but wheather your dear old dad feels OK or not, I'd be tempted to head to the nearest hospital for help if no one can help remotely.

I will tag @Skye2 who is an RN and fellow community member - maybe she has some insight!!??

yikes….
let us know what shakes out.

cheers
su

#pumpingtoofast

LVL999
6 Posts

Thanks for the reply. I guess I needed to rant after that phone call with the home care nurse, but shortly after I called CAREPATH which is supposed to be oncology nurses that are available on weekends. The nurse there said it seems to be on track and that we could lower the bottle to the waist to slow it down. also told us to make sure the bottle doesn’t get too warm - it’s been really hot in Toronto lately so perhaps that was the reason..

Skye2
222 Posts

@supersu @LVL999

Im so glad you made that phone call! You should never be left to fend for yourself, weekend or not!!!!

When I started my treatment, I was given a reference sheet with my patient number, and direct line for cancer patients to call anytime for anything. It sounds similar to what you have, so, anyway, I’m glad you got some reassurance!

I must say, I’m not familiar with this pump either (I’m an OR nurse!), but you should always have help within reach. As supersu says, if you are in doubt of anything, and worried, I would head to a hospital.

Hugs to you and your Dad❤️

Sue

D1955
120 Posts

@LVL999

I hope all worked out for your dad this weekend.

I can understand your frustrations. My husband has had to have at home IV infusions. I had to learn how to hook up, disconnect and flush. I am NOT a nurse but have found over the years of his treatments I have learned a lot.

Once he had to go to ER and get IVIG infusions. The ER nurses had never worked with this product . I stayed awake all night to watch for bubbles and empty bottles and drip rates. I give great kudos to all the staff at the cancer center, they are a special breed. The ER staff are overworked and can't spend the time with each patient. I am glad I was allowed in as this was during the start of the pandemic.

D

Dubsone72
7 Posts

Good morning @LVL999

I had a small issue with blood at the site of my PICC insertion and did a video call with a CareChart nurse, it was nothing to worry about but the fact she could see me and look at the site really put my mind at east as this is my first treatment. I have attached a pic of how to download if this helps. She was extremely helpful and I only waited 5 mins before the video chat started.

Good luck with it 👍

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elle29
1207 Posts

Yes it’s absolutely outrageous he was left this way & for u , and frustrating to be given that task ! Monitor sent home with infusion and a booklet ! Instead of a nurse ! Or a call line # at least for medical assist being a weekend ! ! Did they say why they did this that way ! ?

Or u agreed thinking u could . I was left with post surgical papers on a weekend too absolutely scared with problems breathing and trying to be optimistic Do it yourself ! Should I go to Emerg & finding later there was a COVID out break in the hosp !

Bc it almost sounds being stuck in the old pandemic medical ways of DIY ! But most of all is when some this is ordered by a Dr being a weekend ! You probably had enough on your mind caring for your dad & anxious for him to survive ?

I had many times myself been ordered something a on a weekend . Called my family so I just went back to the hospital Emerg . You can also order an ambulance 🚑.

Unsure leaving you and your dad to manage monitor alone ! Contact the CC advocate sources , or the hosp patient liaison when u can !

It appears that the doctor who ordered this almost was too confident, to think or let family mange to do this at home , and without medical supports is almost negligent ! Unless your dad wanted to be home ? Something should of been arranged to care about this infusion don’t the others here on CC think as a precautionary measure bc these are nursing tasks to monitor and give check the sites on his body with inserted needle etc ?

I hope u got some medical contact assist through the 24 Oncology on call or provincial Nurse line !

@LVL999

How is your dad doing now after his infusion?

Lianne

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