for those who get IVIG at home

    • Anonymous
      July 29, 2008 at 12:49 pm

      What does your nurse do while she’s there other than monitor blood pressure ? I feel strange that I have to “entertain” or something. The benedryl makes me sleep so I’d feel bad to konk out ? I dont know.

      I still think having her bring her swim suit and we do the treatment poolside is a fine idea. :rolleyes:

      well wishes,

    • Anonymous
      July 29, 2008 at 12:54 pm

      Lately my nurse has been coming to my office to give me IVIG. She does crosswords while I work. A few times I have put my head down on my desk and taken a little snooze so she does her crosswords then too.

      I 2nd the notion on feeling like you have to entertain them though. So it is nice to have something else I have to do. Then I don’t feel so guilty. I would just tell her that the benadryl makes you sleepy so you are going to take a nap and I’m sure she’ll be fine. Or turn the TV on and let her pick a TV sho to watch. She might enjoy the time to get her soaps in! ๐Ÿ™‚

    • July 29, 2008 at 1:00 pm

      We have an unusual circumstance! We Love Joe, he and Kevin shoot airsoft guns, play xbox, watch movies and I make them awesome lunches. Lateley they have been going outside, but you can’t let sun get on the ivig, we cover it up. When Joe is on vacation and we get other nurses, they either read a book or watch what Kevie is watching or talk on their phone w/other patients. You have to feel them out, they too may want to be left alone. Ask, they would probably appreciate that you would like to know what they want. I do always feed them, I am grateful for the care they give Kevie.

    • Anonymous
      July 29, 2008 at 1:36 pm

      I actually felt the same way when we started home care. Emi’s nurse is great & let me know that I didn’t need to entertain her. She brings magazines or a book to read. She said that most home care nurses carry stuff like that.

      It’s not about entertaining the nurse. She’s there to care of YOU…not the other way around.

      Take your Benadryl & get a nap…you’re a mom, so I know you need one.


    • Anonymous
      July 29, 2008 at 5:09 pm

      I am just starting the home care, and initially I did feel like I had to entertain the nurse too( I was brought up to entertain guests in my home), but she brought things to do, and we ended up gabbing. I am not comfortabe sleeping while a stranger is in my home, but once we get a schedule and I hopefully have the same nurse, I hope I can feel better about taking a nap if I need to. I have fed her or a friend has brought us all salads and we all ate together, and today she even brought snacks. The other thing she has helped with is helping me learn more about my notebook, and I really appreciate her help. Having the ivig in my home is so much better than having to go to the hospital; I like the privacy of my own home and I really save on the energy and time management. Emma

    • Anonymous
      July 29, 2008 at 5:50 pm

      I read and drink my coffee if they are here early.I get into my bed and try to sleep if possible. It’s hard to have someone in my house.We do our own thing. They come with laptop, books, food, and that always in use cellphone. They go out front and chat with whoever. One is so emotionally distance-I’m not real thrilled with her. She acts like it’s such a chore to come. Another one is really fun and we share Chinese lunch I go get before she arrives. They are my neuro’s own nurses so I don’t have much of a say of who’s coming or a supervisor to call about how they behave.
      If they are agency nurses and you don’t care for one-then ask for someone else to come instead.
      It’s so better than going to the clinic-no driving,no dressing up and can crash as soon as they leave.
      Of course I’d much rather I didn’t have to have IVIG at all. Over 240 infusions.

    • Anonymous
      July 29, 2008 at 6:04 pm

      My nurse hooks my IV up in my kitchen and for that first hour, she takes my BP and pulse every 15 minutes, so we just sit and chat, usually about my needle phobia (I can’t stand them and usually near pass out every time i need to get hooked up), and then about my medications, etc. She updates my patient information, asks about pain levels, etc. After that first hour, we move into my family room and I put a movie in for us to watch, but I tend to fall asleep and miss parts of the movie. She brings her lunch and eats, she brings a laptop and types on that, and also makes calls or watches regular TV. We chat also as we’ve become friends.

      I admit, the first couple of times she came, I felt really awkward because here was this stranger in my house, but it is fine now.

    • Anonymous
      July 29, 2008 at 6:42 pm

      This advise is being so helpful for me since right now they have not decided on IVG’s just yet until they get a nerve biopsy done. Saw my other doctor today and he mentioned this being done possible but am waiting for all the other testing to be done. But I am learning alot from everyone in here! It’s nice to hear the input and what I can prepare myself. I wish everyone in here to get well soon and pray we all get cured!

    • Anonymous
      July 29, 2008 at 6:45 pm

      I am lucky, I get along with my nurse very well – we have similar personalities (STOP CRINGING, I’m not THAT bad!!!) We watch movies, TV, check out stuff on my laptop, chat… and the last two times we’ve taken my new/used golf cart out so he could pick berries. ๐Ÿ™‚

    • Anonymous
      July 31, 2008 at 5:46 am

      Deem-try lying down in bed to get your iv started-maybe that will help. I did yesterday and we used the hot technique-hot roo. hoot. shower, hot cotton long sleeved nt gown and hot towels-maybe was a good thing I was lying down, it still took her 5 sticks and digs to get in, but after the nightmare day before. the bed woeked better than sitting up and iv is still in, so hope she can use that one today. Emma
      Good luck Stacey too. Yesterday, my neighbor came up, brot snacks, and told funny stories for about 2 hrs. We had fun. Truthfully I am working on getting a port and then I will probably stay with the home infusion company; otherwise I think the hospital nurses were better at starting iv’s because they did them all day long, and so far my two nurses arent as good and don’t start as many iv’s, so are’t as skilled Emma

    • Anonymous
      July 31, 2008 at 10:02 am

      Gee, Emma, what happened yesterday if today was better with 5 sticks? Yikes. ๐Ÿ™ Couldn’t they just have left the IV in from yesterday? That’s what they did for me last week, every day. They put another dressing on it, and told me to cover it with plastic when I took a shower. Of course they still had to change the site twice more, for leaking once, and I forget the other reason. I’m curious how they found that many good sites to even try? I would definitely go for a port if I were you. If this treatment works for me, I will for sure! How are the rest of your side effects going?


    • Anonymous
      July 31, 2008 at 8:53 pm

      Hi Mags-slept through most of my ivig today only to be awakened by the nurse today when it was almost done and found that my iv had gone subq and she dc’d the iv immed. and threw out the rest of the ivig:( Was really liking the idea of home therapy vs hospital, but I feel the home nurses ruined my veins and now I have to get a port. For 8 eight years the hospital nurses have reassured me that my veins are fine and I don’t need a port, and now, all of a sudden I do since home care took over. 13 sticks this week for my ivig is unacceptable to me so after my port is put in ( I just hope I can get it done before my next ivig in 2 weeks ), I also think I am going to have a different home infusion co. or go back to the hospital for my ivig. Got a headache today after my ivig despite my premeds. Took more benadryl and did switch from Motrin to Aleve, which my nurse had me take two of after my iv went subq. Have been icing my arm too, and the hardness and swelling are coming down. Sorry I didn’t have better news for you. Home care usually is wonderful and I did some home care nursing too and I was a really good iv starter, but I guess I got 2 nurses that aren’t, in my opinion. Take care Mags and wishing you the best.

    • Anonymous
      July 31, 2008 at 9:40 pm

      and that the nurse didn’t catch it sooner is worse news.
      I’ve been lucky, and I USED to have good veins…but as my nurse put it today…’old faithful’ is going to have to be retired.. Went in fine, didn’t draw like it should and got pulled and well-worked just fine then!
      I can’t keep the catheter in over a nite as it tends to shift and then cause problems, but in summer heat I really hate to wear long sleeves because I feel as if I’m a junkie w/the needle marks and bruises. I too am considering a port.
      I hit it off w/my home IV nurse right away and for all intents and purposes I’m ‘hers’ as a client. I do prepare fresh coffee and often breakfast buns or turnovers if she wishes to nibble. [She comes very early to just early in the AM] There have been times when she’s brot me a bun from somewhere on her way here as well. We share bits of personal life, discuss to a lo key degree politics and tune in to mutually agreeable TV shows-which I usually fall asleep during. She also does the phone, paperwork and reading thing as she needs, but is ever alert to any changes to my breathing etc during the infusions. BTW? She does nothing BUT infusions 90% of the time and for regular patients. Tho she has trouble getting that catheter in at times, she appreciates me as I’m apparently and easier ‘stick’ than many of her other clients.
      For me, the hospital infusion nurses weren’t as up to date on products nor of new procedures as the home service nurses are in my area/company. I had many errors in infusing while reciving IVIG at the hospital. Honestly I feel safer with the home system, I also [just in case?] know exactly how long it’d take EMT’s to get here and get me to a hospital.
      That swelling and bump should go down in about 10 days..that’s been my experience [from the hospitals] and keep icing until the heat is gone. Then some very gentle warm compresses and lite massage in that area should help it go down.
      I do know that my pre-IG treatments of Benedryl should knock out a medium-sized elephant? But they don’t …not until later. Then I nap a good 2-3 hours waking up w/what I call a Benedryl hang-over. After that I’m good to go, usually.
      Hope this helps.