Liver, Spleen + IVIg disaster

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… 😮