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Review of my first in-home infusion
Good morning my fellow LEMons!
Last week I had my first in-home infusion and I wanted to share my experience with you all!
Overall, there were no dealbreakers, but there were definitely some kinks in the process, which I did expect for the first time.
The pharmacy delivered the medication and supplies to my home a few days before my infusion. There was some miscommunication, and I was sent IV supplies and not sent anything for my mediport. I called and they overnighted me the correct supplies. However, I realized they were still missing quite a few things.
Luckily, my infusion nurses had extra supplies when they came to my house, and we were able to make it work. One thing I noticed is that they sent the exact number of things I needed and did not send any extras to account for errors. Unfortunately, this became a problem when my pump tubing began to malfunction halfway through Friday’s infusion. I also was not sent an IV pole which became a little bit of a challenge because the IV tubing I was sent was pretty short.
The nurses elected to come later in the day (2 pm) than when I normally start, so we were infusing until 10:30 pm. This was not ideal for me, as I normally would finish around 2:30-3 pm at the infusion center. I think that the home infusion company thought I was exaggerating when I told them my infusion took a total of 7 hours if things ran smoothly. Next month we are already prepared to start at 8 am and one of the nurses is coming back for both days! I also have a list written down to ensure I have extras and everything I need!
Hopefully, we will have most of the kinks worked out for my February infusion!
Did you have any kinks to work out starting IVIG at home?
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3 Replies
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Even though I still take my infusions at an infusion center with an on-site pharmacy, there are occasional lapses in the supplies the nurse has to get started. I’m glad your home infusion nurse came with extra supplies. And that your second go at it will be better organized and prepared.
Over the years nurses have given me extra infusion supplies which I keep in my carry bag that comes with me. Just in case. -
Hi Ashley, congratulations on the transition to home infusion! Over the past couple years, I have occasionally had supplies that were missing but the home infusion nurses typically had a personal stash. The IVIG service calls me before the shipment to ask me if I need anything. I’ve found that nurses have various levels of proficiency with needlesticks, some taking many sticks to hit a vein. They come from various areas of expertise, from school nursing to ICU, and home infusion is a part time gig for most. Arrival times are estimates at best, sometimes they are up to 2 hrs. late, so that is frustrating to plan my day, especially if they say I’ll be there at 8 am and don’t arrive until 10 am or start at 5 pm and leave at 11 pm. I have never had outpatient infusion, but since I no longer drive, it is a welcome service to have monthly infusion in the comfort and isolation from others in my home. The few issues that I list above outweigh the effort to go to a center. One disconcerting event was that a nurse came to my place who tested positive for COVID within 8 hours of my visit. While we both wore masks, I was concerned. I researched CDC and home health nurses’ association policies, none of which require rapid testing before they arrive. I asked the agency if the nurses would do a rapid test (I would pay for it) and they said no, CDC does not require. As with anyone, there is a risk of infection exposure; however, I ask that they do not stay in the room with me to reduce risk.
Hope February goes well! best of luck Deborah
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@pricewool
I didn’t personally experience any shortages at the infusion center aside from the IVIG shortage that was a few years ago! I guess I have been lucky!
@lemsdiscussion
Thank you for the wonderful tips! Wow, the info about your nurse testing positive for COVID is a little surprising although at my hospital, we are told to come to work after testing positive if we do not have symptoms. I’m glad you didn’t’ end up with COVID after that!
Hopefully I won’t run into the issue of my nurses being late as my infusion takes about 7 hours total to complete. I’ll keep you updated on how it goes next week! I have the same nurse returning for both days so I think it will be smoother. Hopefully we’ve worked out the kinks!
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