Hospital didn’t have ivig

    • Anonymous
      February 11, 2008 at 10:32 am

      Went to start my 5 days of ivig today 8am. They told me they had the work order ,but that ivig was rationed out , an that none was allotted for me.
      I called my Dr. after I got home, she called them I could tell she was not very happy. Anyway she called me back 15 min. later an had me re scheduled for tomorrow at 11.30 at another hospital,65 miles away.I am not looking forward that drive everyday, but you have to do what you have to do.Hope I am not snowed in in the morning!

    • Dawn Kevies mom
      February 11, 2008 at 10:46 am

      Willie,
      I just noticed you are from Illinois. Would you beleive I actually know someone in Effingham? (My neice’s boyfriends family lives there) We are from Illinois too!

      Good luck tommorrow! I will be thinking of you!
      Dawn
      kevies mom

    • Anonymous
      February 11, 2008 at 11:42 am

      You could ask your dr to talk with both hospitals to see if the one that is further away will transfer your IVIG to the closer hospital. Sometimes hospitals will do that. Even if it’s too late to transfer tomorrow’s dose maybe they could do it for the 4 remaining.

      We had to do that once with Emily. The hospital we were at only had 1 dose of IVIG left. Her neuro called another hospital & the 2 hospitals agreed to swap IVIG.

      Good luck,
      Kelly

    • Anonymous
      February 11, 2008 at 6:34 pm

      Emily
      I think my Dr. was kind of upset with this hospital not informing them are me that all of their ivig was already alloted. There is probably more to it then I will know.
      But the hospital I will be going to is is in the same city my nuro has his main office,also much larger an nicer. I am still able to drive alright,I am hoping the drive is kind of relaxing to me. I will let you know how it goes.

    • Anonymous
      February 11, 2008 at 6:53 pm

      Willie, good luck tomorrow, I hope they have your IVIG and you get your treatment started right away. Don’t be discouraged if you don’t see results immediately. I have heard it can take a while. Is the prednisone helping you at all yet? Keep us posted on how it goes.

      I am scheduled for my second round of IVIG this Thursday, it will be my first monthly maintenance dose.

      -Dee

    • Anonymous
      February 11, 2008 at 7:30 pm

      Deem….
      I would say the pred. is helping some,I was able to go 7min. at 2.5 mph. holding on to the bar of my treadmill today,before stating to getting some uncontrollable foot slap at the very end.I have been doing my pt they taught me,as much as I can,I will keep fighting. Thank you guys for listening, an I hope all is going good ,are aleast better for all.Ps This time last year I was keeping a log I was walking 3.8mph for 30min. on a 7% incline with out holding the bar at all.Lots of room for improvement.

    • Anonymous
      February 12, 2008 at 9:35 pm

      I got My first treatment today, the hospital I went to is about hour an half away, but it is worth it, the people were super nice, I just half a little flu symtoms,not bad at all.I will have to go back an forth until sat.I will keep you posted.Here is hoping everyone the best. Willie

    • Anonymous
      February 15, 2008 at 3:19 am

      Willie, have you finished your third treatment? Hope you are doing okay.

    • Anonymous
      February 15, 2008 at 5:46 am

      Deem…Yes ,I have did day three ,two more to go.I am feeling good about it,I have had no ill reaction.
      It is probably just wishfull hoping,but it kind of seems like am getting a little more feeling in the tops my feet. I go to see my Dr. next Mon,I hope he sets me up on regular program.
      I have heard nothing about my disability evaluation, I took the 5th. I am very nervous about that.Willie

    • Anonymous
      February 15, 2008 at 11:12 am

      I ran into a similar problem with my local hospital. They said they could not obtain the medicine they needed, so I had to drive to another town that was 120 miles away. I later was told that the reason that the local people would not do the treatment was that I was om Medicare and it did not pay them enough to bother with it.

      Its all about the money

      I hope your treatments go well and that you recover.
      Larry

    • Dawn Kevies mom
      February 15, 2008 at 12:49 pm

      Willie,
      It is not wishful thinking, it is positive thinking. I am so happy you have feeling in the top of your feet. Kevin gets instant reaction to ivig too!! You are one of the lucky one’s. I am praying things continus to go well for you1
      Dawn KEvies mom