Topic: Has anyone in the US been allowed to do IVIG on their own??
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
That is, has anyone's doctor allowed them to administer it to themselves, after years of using it with no problems?
I doubt that anyone in the US has been allowed to do this, but would like to know for sure. I've really had it with all the bad nurses.
This last one was great for 2 1/2 years, with the major exception of having yelled at me 3 times for no reason. But this last series of things is the last straw. Plus, she suddenly refused to work with me anymore, after having lied to me, refused to implement the treatment plan discussed at length with the nursing supervisor, etc.
Apparently, she's used to calling the shots of who must get their port surgically removed and replaced! That's well beyond the scope of her license.
Thank you.
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Sammi
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Member # 110
posted
This nurse's behavior sounds very bizarre. It can be hard to find a good nurse, but you are paying them. If one is not doing the job, call the agency. Explain the situation and ask for a different nurse. Tell them you need someone who is really experienced or you will contact another agency.
If you want to switch to Sub-Q, you can infuse it yourself.
Rumigirl
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Member # 15091
posted
Sadly, I'm sure that the US is too litigious to allow this. My doctor by now knows that he can trust me implicitly. However, it's still surely too risky for him, even though the chance that anything can go wrong is next to nil.
notti here on LN says that patients in the Netherlands, who have had it for years with no problem do it on their own. But most likely they sue doctors less in the Netherlands. Not that I would be interested in suing him. I'd be willing to put that in writing, but it likely still wouldn't matter. I could ask, but likely I'd be barking up the wrong tree
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by Sammi: This nurse's behavior sounds very bizarre. It can be hard to find a good nurse, but you are paying them. If one is not doing the job, call the agency. Explain the situation and ask for a different nurse. Tell them you need someone who is really experienced or you will contact another agency.
If you want to switch to Sub-Q, you can infuse it yourself.
Good luck!
Thank you, sammi, I agree that her behavior is very bizarre and inappropriate. I now find out that after having run out of huber needles just before, because she hadn't paid attention to ordering needed supplies, I now hear that after THREE visits in one week, she didn't send in a supply list for the next order, as she knew she needed to do! So now it's my job.
Meanwhile, she sat here watching movies on her iPad. I don't mind her doing that, but not at the expense of doing her job, which is easy to begin with.
I have been through this with the infusion company so many times over the years, it just isn't funny, and it doesn't improve. Now I have to figure out where to go from here. But now I have not enough time before my port has to be accessed again to figure it out and get it in place! I've really had it!
Who the HE double hockey sticks does their job anymore?? Seems like next to no one.
I am determined to learn how to access my port and take over that part. But even assuming I can contact the nurse that helped me several years ago, and that she will help me, which might not happen, it will take a minimum of 3 weeks to get good at it, so I can do it on my own.
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Did you get your port flowing rumigirl? I am mostly my own nurse ...my llmds 80 yo mom was appalled when she saw me infusing on my own ..what doc and dx did it tàke to get ivig ? My nurse friend that does help suggest i see a neuro again and get a muscle biopsy..doesnt sound fun or quite worth it ? Did you make any gains on ivig
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
In the Netherlands and also in the UK self administration of IVIg at home is quite common, so it never occurred to me that the rules in the US would be different. I'm sorry for that. It's too bad, because with the right training and a trained partner by your side, self infusion has proven over the years to be safe. I do understand lawsuits are a problem for US doctors. In Europe people aren't sued that easily, thankfully.
What Sammi said is true, you could consider switching to subcutaneous infusions. There are both advantages and disadvantages of course. It may be harder to reach a higher dose with subcutaneous infusions, but I don't know what dose you receive right now. You could ask your doctor if it's an option for you.
Do you need your port for other medication? Otherwise you could try the SCIg and if it works have your malfunctioning port removed.
Posts: 109 | From The Netherlands | Registered: May 2014
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