Really, Really Bad Week

    • Anonymous
      November 21, 2007 at 10:31 pm

      Sorry Dawn I didn’t call you but the neuro I saw admitted me immediately. I thought I had a good neuro but boy was I wrong. He knew what CIDP was and he asked why I had no treatment yet and admitted me and had one bag of IVIG started and then that night he told me of this new info about one bag run once a week for like 4 weeks or domething cant quite remember everything right now I am so mad. When he called me about that that evening I told him no I wanted a five day loading dose and then another with in 30 days because this has gone on so long and he agreed but the next morning everything changed and he wanted another MRI which they just did in MAY and then he also wanted a LP. They actually have problems getting a lumbar on me but he said not to worry he would sedate me enough and he was really good at them. He told me what he would give me to sedate and I said it would not work but he thought it would but when he tried it did not work and he threw a tantrum and stood up and said he will write discharge papers for me. My husband talked him into waiting until my regular doc saw me and see what he could work out. Again and LP was tried by the anesthesia department but they could not get into the spinal cavity so again no luck but they have managed to give me a UTI and a major problem with my back since all this and now I am in subacute until they get me back off the Dilaudid by IV. Another 5 days probably oh yeah and by the way that little tantrum the neuro threw was the last any of us heard from him including my regular doc and my physiatrist. He dropped me while in the hospital and never came back needless to say now that he started a diagnostic all over again I cannot get the treatment to continue and nobody here knows what to do. I finally since last wednesday got a computer to use in here and have done nothing but cry and yell at some staff since this all went bad. I dont like staff with bad attitudes so when they come in my room with a lousy attitude I make sure they know that I dont like it and I get a new nurse or CNA or whatever I need at that time. I am at a loss and my regular doc thinks that we should go out of state to get this treatment going but we cannot afford this at all I still am waiting to hear about my SSDI I called my worker and she said they were just waiting for their phsychologists report and they had already sent a reminder and it was unusual for her not to have gotten it in yet but they already had the medical doctor’s report. I have to do what they want in this amount of time but they can just wait as long as they like on someone else. Something is wrong with this picture. Their medical doctor said he was putting me down as completely and fully disabled and i shouldn’t worry but this is taking too long and now I am mad. Nothing has gone right and after this last eight plus months I dont know how much more I can take. No neuro now and no treatment now and no power chair yet and no disability yet. Way too much stress and no way to deal right now. I really forgot how much I hate hospitals and medical “stuff” so much that I just want to go home. Our ministers wife is here also her leukemia is back and she is here in the same hospital and I can look out my window and see the other hospital 2 blocks over where my husband’s uncle was admitted yesterday for pancreatitis. He is really ill and on morphine right now. Wow what a wonderful holiday all the way around. Anyway if anyone has any suggestions on where I should go (as long as it is NOT Mayo) or what I should do now I would appreciate it because i am at a loss. Thanks to you all in advance.
      Jody:confused: 😡 🙁

    • Anonymous
      November 21, 2007 at 11:20 pm

      I am literally on my way to bed right now (have to cook for the entire family tomorrow), but I had very poor luck the 3 months I was a patient at Mayo. Get youself to the University of Minnesota where there are caring doctors like Dr. Gareth Parry. My treatment there was sooo different than what they did to me at Mayo in Rochester, MN…

    • Anonymous
      November 22, 2007 at 7:50 am

      I am so sorry to hear about the poor care you are getting. Don’t know if you are anywhere close but I had extremely good results from Dr’s Parks and Lopate at Barnes Jewish Hospital in St. Louis. Barnes is a teaching hospital associated with Washington University and both of my doctors are assoc. professors that specialize in neuro-muscular diseases such as GBS and CIDP.

    • Anonymous
      November 22, 2007 at 10:29 am

      I live in Mandan/Bismarck North Dakota The hospital is in Bismarck but I live in Mandan, they are seperated by the Missouri River so it’s like the twin cities LOL! St Louis would be a long way to go and I need to find someone or something closer or that will do something here already like they started. The first bag (and only bag) of IVIG that they gave me did not cause any type of bad reaction or anything so I an really angry that the neuro did not follow through with what he agreed to do for treatment. My primary doc is not happy either. We are just kinda stuck right now. I hate being in the hospital [eriod but being here over thanksgiving really sucks because now I enjoy the holidays since my husband and I got married in Dec 2004. I really like my in-laws alot they are wonderful. Have a Great Holiday, Jody:)

    • November 23, 2007 at 12:32 pm

      I don’t understand, why did the neuro cease ivig? Can the primary just continue the orders and follow the standard protocol for treatment? Can you DEMAND to see the cheif of staff or the president of the hospital? Someone there has to have knowledge of cidp! Good luck to you! Although it is hard, TRY not to be mad at the other workers, if you are able to get a doc to listen to you and continue treatment, you will be at the nurse’s mercy, do not burn your bridges. I will pray for you!

    • Anonymous
      November 24, 2007 at 6:08 pm

      I have complained to higher ups about what the neuro did because it was basically patient abandonment which is big trouble for him. Unfortunately he wanted to redo everything after my diagnosis this last spring he wanted all his own tests even though they were done at the same facility he is at. All except the LP were done already and the last neuro said that since it is not definitive and that the LP I had done when this happened almost 7 years ago did not have the protein then it probably wouldn’t this time. Unfortunately this neuro believes that you have this only if that shows in the LP. I have never been normal so why woulod I now? It is pretty much out of my hands because my primary doc cannot go through with the therapy because this neuro has caused complications be trying to rediagnose me. Yeah I have talked to the higher ups but they take their own sweet time to figure these things out and I will be discharged on Monday. This all hapening on a holiday weekend did not help either. My regullar doc wants to refer me out of state but I want the treatment here because it is close to home and we cannot afford to go out of town. I guess it is back to my method of therapy then. I guess time will tell if or when I receive treatment of either IVIG or PP because therapy is the only thing they are doing. Thanks
      Jody:confused: 😡

    • Anonymous
      December 2, 2007 at 7:27 am

      How are you doing? Been thinking about you and praying for you