My IVIG did not go well

    • Anonymous
      July 8, 2009 at 9:43 am

      I had two days in a row of IVIG. I get home health care. My nurse that I’ve had for the last year, that I adore, called me Monday to say she was no longer with the company and that the nurse she’d been training would be there to take her place. I dont know details why she’s no longer there but can imagine it’s b/c the company took full advantage of her, worked her too much, and wouldnt listen when she told of issues with her trainee.

      So, the trainee nurse comes. Very nice woman, nothing against her personally at all. She gets my IV started, hooked up to the D5 and the gammunex. A knock at the door, who is her boss, coming to “observe”. As I reached to get up, the tubing came apart and fell on the floor. The nurse said, “oops” and picked it up off the floor and re-connected it quickly.
      Did NOT wipe it off or switch it. Put the contaminated tubing back together. Granted, my home is very clean…but, still.
      Ok, I brushed that off b/c she was nervous, it was an accident , etc. One chance.

      The infusion went ok. She doesnt take vitals like my old nurse did and doesnt time the drip.

      Day two of the infusion. As she was trying to get my fluids going, she let some drip into the sharps container and said it was the D5. I really beleive it was the IVIG and I said something. She said it was the D5….I disagree.
      Ok, strike two.

      The infusion began at 4:50. The boss came again and noticed nothing was dripping…it’s positional…she stayed for a short time and left. NO VITALS until 6p. Over an hour later …including no baseline vitals.

      She only timed my drips once that I saw and that was at the end. My Bloodpressure got to 155/103 and I was short of breath. It was slowed down and my BP came down but she didnt do vitals at the end of the infusiion…it was 30 minutes before the end when the last vitals were taken.

      I called to let her supervisor know …she’s going to be there for the entire infusion next time. I’m not so sure I want a next time…but, I also feel like I need to give this new nurse a chance. She has a bachelors in nursing and has done infusions many times they say. Dropping tubing on the floor and re-connecting is a HUGE no-no, I dont care what they say. Not sure I am satisfied with the outcome of talking to her boss but of course, she reassured me, things will only get better from here and my issues would be addressed. I’m not trying to get anyone fired…merely trying to save other patients from serious problems.

      AND I want my drips counted and my vitals taken the way they should be. I have enough bad luck to have CIDP that I also have enough bad luck to stroke out during an infusion.
      The supervisor said that since I’ve been getting infusions for so long, I dont need the vitals as often. Sorry Chucky, that’s not how I want it.

      I really dont want to have to go back to the hospitals for the ivig…

      DOnt know what to do…..

    • Anonymous
      July 8, 2009 at 10:40 am


      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,


    • July 8, 2009 at 12:12 pm

      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

    • Anonymous
      July 8, 2009 at 12:33 pm


      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!


    • Anonymous
      July 8, 2009 at 3:05 pm

      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

    • Anonymous
      July 8, 2009 at 8:48 pm

      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.

    • Anonymous
      July 9, 2009 at 8:35 am

      The “leak” is enough to be standing on the bottom of my sharps container. I cant say 100 percent that it was not D5 but I really do beleive it was the IVIG. I have to pay alot of money for it and I want it all to go into ME not the floor, the container, etc.

      I expect things to be sterile and I expect them to wash their hands more than once AND I expect my vitals to be monitered and for them to know the drip rate at ALL times. I dont think that’s too much to ask, especially the price I have to pay for them to be there. I also dont think that if my pressure is high that I should be sitting in the room by myself …but, I probably expect too much.

      I have not heard from anyone to call and check on me like they normally do.
      Probably best.

      I’ve been under huge stress at work but off tomorrow and My hubby and I, and Connor, are going to Valentine, NE to tube down the Niobrara and camp one night. Havent been since I was pg with Connor. I’m excited to go and get away.

      I’m going to call around today for other companies.

      thanks guys,


    • Anonymous
      July 9, 2009 at 9:50 am

      You are NOT expecting too much!

      Just wanted to let you know.


    • Anonymous
      July 10, 2009 at 8:08 pm

      Hope your overnight trip was relaxing..sounds kinda scarey to 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


    • Anonymous
      July 10, 2009 at 9:44 pm

      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!!!

    • Anonymous
      July 11, 2009 at 3:27 am

      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?

    • Anonymous
      July 11, 2009 at 9:23 am

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