Liver, Spleen + IVIg disaster

    • Anonymous
      November 21, 2007 at 3:46 am

      Each time I have a relapse my liver and spleen swell up and I look like I’m going to have triplets. So far CT scan says they are enlarged and blood tests have shown elevated liver enzymes but unless yesterday’s tests show something else that’s all we’ve got to go on. My neuro says he has never heard of anyone having liver and spleen enlargement with GBS or CIDP and thinks there might be something else going on as well. Have any of you all had this problem?

      Also, my last infusion of IVIg was Monday. Unfortunately the nurse they sent was not experienced with the equipment, spent much time on the phone asking how to hook it up etc. I was pretty sure the vein was blown in 15 minutes by the amount of pain I was in but he kept telling me it was OK and I kept turning the heating pad on my arm up higher to cope with the pain. After he left my husband noticed a rather large puddle of IVIg on the floor under where the IVIg bag was – I’d say probably half the bag ended up on the floor. Once I got done freaking out I called the nursing company, told them about it and said “DO NOT SEND ME ANYONE WHO DOES NOT KNOW THE EQUIPMENT.” Meanwhile, my arm is red, swollen and painful – though I’m not seeing streaks so I don’t think it’s infected – but as my husband said – if the IVIg can get out then something else can get in… I also took a look at the prescription, my first time seeing it, and I realized that they are not following the protocol of ramping it up slowly – what is written is 50->100->150->200 in an hour but they are going 50->200 in 15 minutes. I asked the nursing company about that and she said the pump comes preprogrammed and they aren’t supposed to change it. While I’ve liked the nurses that have come out here I don’t understand why I have a home nursing company that is based 2 hours away. It’s difficult for them to find someone willing/able to drive all the way out here which is how I ended up with the guy who didn’t know how to hook up the pump – he told me he usually just does colonics and did I want one of those (EEEWWWW!) I live in the country on a dirt road – what’s going to happen the first time it snows? You can’t get here without 4-wheel drive… I feel like the nursing company took it as a personal affront that I complained about the IVIg ending up on the floor, as if doing their best should be good enough for me. I plan to talk to the drug company today and see if they have another team that is closer and/or more experienced and to let them know about what happened as well. I mean I obviously didn’t get the entire dose of IVIg… what a waste and it was scary too!

      Then just a general rant about the quality of nursing care – I had a bunch of blood tests done at Hopkins yesterday and while sitting in the lab lobby waiting to be stuck two nurses came and looked at my form, put it back and took other patients. One of them actually tossed it across the table – right in front of me – and said “I’m not doing this one, what is this crap? I’ll be here all day.” It’s not like I had 15 tubes taken – but one of the tests was for cryoglobulins and they have to keep the sample heated until it can be spun out. My point is – where did “caring for the patient” go? They obviously didn’t care that me and most of the lobby could hear them complaining about my blood tests and then that made me feel oh so safe going back there to be stuck knowing that nobody wanted to do it, just wanted to get it over with etc… If it was just this lab at Hopkins I wouldn’t think twice about it but this kind of thing seems to be happening a lot lately – nurses complaining about patients, doing the wrong blood work, or not doing it at all so I have to go back multiple times for the same test… I just don’t get it, was there some kind of nursing strike in the last few months or am I just unlucky?

      Sorry to be whining at you all – my last relapse took a lot out of me but the IVIg DOES appear to be working (when its not on the floor) as my NCV tests yesterday showed improvement over the previous ones. I do feel better, my legs are more stable and I have a bit more energy as well, now I need to work on my attitude… 😮

    • Anonymous
      November 21, 2007 at 9:14 am


      First off, the home care company should try to find you 1 nurse who always comes out. That 1 nurse will get to know how your body reacts to the IVIG & they will be able to tell if it’s going to be a rough ride or not.

      The IVIG being on the floor could have come from the pump. That happened to Emily once while in the hospital. I don’t remember exactly how it happened but I noticed the puddle right under the pump & freaked out. I was TICKED off!

      The pump should be programmed by the PHARMACIST at your home care company. They get your rx from the dr & figure out the best way to ramp it up. The home care nurses should be trained in how to reprogram the pump just in case a patient starts to have a rough ride & they can slow the infusion.

      I would call anyone & everyone you have numbers for to complain about that home care agency. That is CRAP with a capital C. That nurse should have listened to you when you said that your arm hurt. It’s NOT normal to need to keep a heating pad on an IV site & he should have known better. And finally, they should NOT be sending a nurse that does colonics to you when you get IVIG. You need an EXPERIENCED IVIG nurse.

      Whew…I’m worked up now too.

      Find a new company. There are MANY, MANY, MANY home care agencies out there. The hospital referred us to our agency. While I haven’t been 100% pleased with them all the time, they’ve done their job & Emily always gets her meds on time.

      Also, I’m sorry about your experience with the nurse at the hospital lab. She should not have done that, especially in front of the patients. Nurses do get the short end of the stick often, especially in hospitals, but there’s no reason to take it out on the patients.

      I don’t know anything about the spleen & liver. The only thing I can think of is to get a full liver function panel drawn to see if there are any clues there.

      Go take a bubble bath or sit out in the sun…that always makes me feel better when I’m grumpy.


    • Anonymous
      November 21, 2007 at 12:36 pm


      How horrible for you, I can feel my stomach going into knots for your pain AND because of those ………. nurses. Its true, where has the caring gone? and why for heavens sake is it such a problem to take a patient who’s blood work may take a little bit of extra effort?

    • Anonymous
      November 23, 2007 at 1:09 am

      I have been wondering how you’re doing.Now I know! What a bummer. I agree, get someone who knows whats what. By the way, are you on anything else med. wise? Celcept or anything else processed by the liver? Maybe it was over taxed with the IVIG and anything else you might be on. Just a thought. I am glad you are feeling better from the treatment. Stay in touch.