My IVIG did not go well

Stacy,

Your home health nurse needs a smack upside the head. She may be nice and all that, but your health is compromised enough without her adding to it. And doesn’t the IV machine regulate the drips?

Is the hospital far away? Why don’t you want to go back there? Sorry, but I’m new to this website (what a God send this is!!!) and don’t know your challenges.

I go to an infusion center that is at the doctor’s office. The nurse draws my blood and runs some checks before I start my IVIG drip. My vitals are taken regularly throughout the drip. The drip starts slow and then builds up to be faster. It takes about 5 hours for the entire process – I do it 2 days in a row every 4 weeks. I get there around 9 am and leave between 1:30 and 2:00. The treatments make my blood pressure go up like yours did and the nurse will not let me leave until my blood pressure comes back down.

I didn’t know you could get the treatments in your home. My doctor told me it’s either the hospital or the infusion center – the infusion center is nicer and closer to my home.

I’m so sorry for you Stacey – I get the impression you are much younger than I. I am almost 59 and my daughter is grown and travels the world (currently in Peru), which I think makes it a little easier to deal with as I have no children left at home. My step-daughter is brittle diabetic and has been insulin dependent since she was around 5. We went through a lot of trauma and drama while she was growing up – blended families are difficult. But we do have a good relationship now. She suffers from PN due to her diabeties, so we now have a lot in common … wish it was something other than health issues …

The thing that “gets” me the most is that I live alone and have no family in the area. I’ve had some really bad attacks at night and so now I have a security system in my home and a panic button by my bed … I haven’t used it yet as the night problems are under better control now.

I pray you will have a satisfactory experience in the future – my house is also clean, but it is by no means sterile!

I wish you the best,

Linda

Switch company’s. There are plenty of others that would love your money!! They travel great distances, so your living way out should not be a problem. We use coram. they use a pump, so there are no drip counting issues. Once the pump broke during infusion, so we had to count that day, but by the next day a pump was at the door by 8 am. I would say that they are all trained the same way (nurses) because when we have to occasionally have a different nurse, they all do everything the same way. Our pharmacist is great, I always call her with questions regarding order changes etc.

Yesterday was another bad day for Kevin access wise, regular nurse tried twice and stopped (last month he tried 4 times, then I called the surgeon to have him do it and the nurse volunteered to come with to see if he could get some insight. The surgeon took 3 tries too!!) Anyway, after Joe’s 2nd try, he called his boss and she came, she used to put in pic lines, she got it first try and agreed to come before work in the am to access Kev on infussion days! Talk about above and beyond. (She did warn me not to get too excited, as the port is now too small and turning, so each access will be difficult) Time for a new port!! Soooooooooooo now that you know we like our company, maybe you can look for another that you will like!!!! Good luck.
Dawn Kevies mom

SWITCH COMPANIES!

What that nurse did was a GIGANTIC no-no. Honestly there is NO excuse for it. She should know better!

Didn’t you have a reaction to IVIG before? They should be extra careful with you!

It doesn’t seem like her boss is that concerned.

I think you should shop around. We use Critical Care Systems & while I’m not thrilled with them right now, we did have a good nurse through them for 3 years. They use a pump so there is no need to count drips. Actually I think anyone who counts drips for IVIG shouldn’t be in business anymore. That’s an outdated method & I wouldn’t recommend it personally with IVIG.

Remember that not all nurses are created equal and neither are home health care companies! It seems to me like they ran off the good nurse & you need to hunt her down!

Kelly

We use Walgreen’s Option Care for Ryan and they are also great. They only do infusions and they are all very experienced. At least the ones by us. Our nurse checks vitals every 30 mins and we have a machine that counts drips. But ryan likes HHC better than going out because he is more comfortable at home and can nap in his bed or sit in his recliner.

Also don’t be afraid to tell the nurse to take your blood pressure when you want it. Or if she does something you don’t like say something. You have to be your own advocate.
Good luck

I have home health team infusion nurses-all do something different. Some take my BP/vitals and others don’t. They’ve never done the drip method unless the pump broke down. Infusion nurse do IVIG certain ways but they should all follow very strict sterile rules.
My nurses sometimes drip fluid out to get it started or changing the bags/connecting tubing causes little leaks. It was sticky when I cleaned it up. Can stain wooden floors.
MY neuro has his own infusion center but I get my at home.
I can’t handle the drive and my insurance pays for it all.
Some neurologists want you to only use their clinic. That’s profitable for them.

I’d make known what you expect to be done and even post it somewhere.

You are NOT expecting too much!

Just wanted to let you know.

Kelly

Stacey,
Hope your overnight trip was relaxing..sounds kinda scarey to me.lol. As far as your infusions, I agree with everyone else. You need to make your wishes known and if that doesn’t work find someone else. you don’t need the stress of worrying about their mistakes.

Take care

Sherry

I would smack the present nurse and her boss, then change companies. I have one of the companies that has been mentioned. My nurse watches me like a hawk, and I have a port too, that once I got the pain of accessing the port under control with a numbing cream, everything works fine. She wears a sterile mask and uses sterile gloves and sterile technique when she accesses my port and when she discontinues it when my ivig is done. Takes my vital signs every 1/2 hour. We use the drip method, and like I said, she watches it like a hawk, where I go, she goes. If you have a pump, make sure she checks the iv site every hour, if the iv goes out of the vein, the pump will keep pumping the ivig into the tissues, and that’s a big no no. I’ve had a lot of horror stories with the pumps, so getting the port has made my life a lot better. My nurse drives 3 hours one way to get to me; I have a 9 hour ivig so she has a 15 hour day with me, and I get it every two weeks..We all can tell you stories. It makes one wonder how many iv tubings she’s picked up off dirty floors, in addition to clean floors like yours. Just say NO to the present company–they’ve got some really sloppy dangerous hiring policies. That RN should have known better. HOW STUPID. Good luck with your new company and hope you had a nice vacation!!!

My nurses tend to wander out doors to chat on their cells phones even when I’m napping. I truly don’t see how they can combine other work/personal issues if they’re in my home on my $$$. They need to be there for ME.
Recently I timed one being outside and it was well over 30 minutes. I’ve had more than a few PM’s with some Forum folks on how diligent their nurses are compared to mine.
My situation is these are my neurologist staff nurses-so that’s my dilemma. Any info travels at light speed with the nurses being tight friends so if I complained it would get very unpleasant.

Connor’s Mom-
I know some of the dripped liquid is IVIG. If the bag has bubbles in it then getting the flow started has to done somehow. My mix of IVIG with sterile water varies. Having the sharps box covered in liquid is too much waste. That would definitely concern me.
Mine wash they hands often and use gloves. Clean re-connected tubing/valves with sterile alcohol wipes each time.
Do check other posts-a few gave detailed BP/vital monitoring/time between pump rate increasing.

What do infusion nurses make an hour?

Infusion nurses make somewhere between $20 & $30 an hour, I believe.