Any tips on wearing infusion pump 24/7 (actually 24/5)
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Lisa, Another when “when life gives you lemons make leomonade” moment!
I always had to remove my pump everyday for radiation, so it is really easy to
reset and has lots of alarms for all bad things that can happen! I really think I carried mine on my shoulder more and it has long IV cord so you can remove around a room with out carrying all the time, there was times I would get up and get a quick jerk cause I forgot about it on the chair!!! lol!!
Enjoy your party!
Lots of prayers-CathyThanks, ladies! I have to confess, after Judy’s question, I did an internet search to see if I could find a picture of the pump and more info on it and I found several horror stories of either mis-programmed or defective pumps that dispensed 4 days of meds in 4 hours and the tragic results. Scared the crap outta me. I know the folks at Baylor know what they are doing, but I’ll still be asking them to show me that it’s programmed right.
And, I’ve decided to just go big or go home. Going to organize a “bling my fanny pack” party and let my friends go wild decorating a fanny pack (or multiple ones) and I’m gonna rock them proudly (sometimes). Maybe we can raffle it off to raise money for the foundation?
Hi Lisa,
My dad has the F5U pump and he actually has a velcro band that straps around his stomach with a slot where the pump slides in. Dana Farber gave it to him. With his shirt over it, you could never tell he was wearing it. Just a thought!
Nikki
Lisa-LOL!!! I wore the 5FU pump 24/7 for 6 weeks while doing radiation. The worst part of it was the “ugly fanny pack”!! My radiation oncologist, Dr. Parik (he bought his wife one of the Runway show dresses, very hip guy) and I spent many visits discussing the need for Coach/Kate Spade… to design something more hip!! I saw him a few months ago and he said I would be happy to know there was a few more options now!! (Not sure if he was joking)!!
The wearing of it was no big deal, the only major change was me and my husband changed sides of the bed, so it could rest on nightstand!! I would meet up with nurse once a week to change chemo bag, and you will have to change batteries (which they provide).
Good luck!!
Lots of prayers and HOPE-CathyLisa…several people have used the 5-FU pump. You can retrieve postings by entering 5-FU pump in the search function. The problem is that you will have to read through many postings to get the information you are looking for. We are trying to fix this problem, but have not come up with the perfect solution as of yet.
Hoping and wishing for others to come forward and share more with us.I too am sorry to not have met your oncologist, but we will be there next year as well.
Hugs,
MarionWith the start of my IMRT treatment in a few weeks, we’re changing my gemcitibine/cisplatin regime to cut the gemcitibine (too strong with radiation). Today was my last day of that combo and I get 3 full weeks off from chemo to rest up for the radiation.
I’ll still come in and get a cisplatin infusion, but I’m going to start on 5FU, wearing a pump 24/5 (M-F). Not looking forward to rocking a … ugh, dare I say it … fanny pack.
Any tips, tricks, words of wisdom from someone who has worn one? One of my friends suggested my husband buy me a Hermes/Gucci/Prada/whatever bag as a medical device transportation unit. However, the day my husband drops Hermes money on a bag is the day that monkeys will fly out of my unmentioned nether-regions. And, I have to say, the day I drop money on a Hermes bag would be equally memorable because, at this point in my life, I can think of much better ways to spend it. Either a bag I own (and I’m way more the Kate Spade/Coach kind of gal – on sale the better) will work, or not.
I do like the idea of saying FU to cancer every day I get up and see that damn pump laying on my bedside table, though. My friends joke there is a direct correlation between swearing and tumor shrinkage.
Maybe. Maybe not. We’ll see.
lisa
PS, off topic, but I think my oncologist was surprised when I mentioned the recent conference in SF, which I knew about from reading the forum last night. He was there. He didn’t know that patients/folks from the .org were there. I think he would have loved to have met you guys. He said it was a really great conference.
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