Another update on Guskno’s Nightmare!!

    • Anonymous
      December 18, 2010 at 2:11 am

      Hi everyone! I wanted to thank you all for the support given in my quest in finding a Home Halth Agency to come and administer my IVIG at home. I finally had mu psychiatrist give me the the Rankin Score I needed to get the IVIG given and paid for by my insurance company at home. It was a great feeling to aeem like I hade a little more contol over my treatents, family time. and life. Well the HHA came to the house woth all the supplies and medication, but they came with the wrong gauge needles, 22! Sinc the medication is so oily, my veins kept collapsing and clotting. The next day, they brought 20’s over. The same thing happened. This procedure has to be performed with an 18 or larger, but the owner of the HHA came to try to get my veins and poked my 9 times. She still couldn’t get it to work. She finally got a vein and left me with my home heath nurse, an LPN without IV experience. We called it off and I am sitting in the hospital waiting for my 3rd of 5 treatments to start.
      Here is the problem: any of you who have received IVIG, you know how paimful the treatments are and how badly pain medication is needed. Well, I take a lot of pain medication at home. I take 40mg of morphime in the am and in the pm, then I take Dilaudid, 4mg 4-6 times a day. What has happened is that part of the chronic fatigue syndrome makes me 18 hours straight that then makes my bp dropto 80/50. So the doctors decided to take my pain medication away. They have now prescribed 4mg of dilaudid every 5 6 hours, which does not even touch my backpain that feels like someone is stabbing my lower (lumbar) back. I actually vommitted this morning from pain! That has never happeded to me before! Not even after my 2 c-sections! What I have going for me is that I have my own medication, but was caught taking it and so they now want to take it away from me!
      I asked the nurses to call the doctor and inform her that my blood pressure has been stable and pleaded that they please put me back on IV pain killers. They are doing a very painful treatment to me and on one hane and giving me less pain medication that my body is accustommed to taking in a daily basis. I am in severe pain and they have taken away the morhine I take daily and lowered the dilaidid I take daily all while giving me an agressive 5 day loading dose of IVIG. I was talking to the nurse and I started crying and telling her that I hate being this pain in the ass patient but this hospital has always addressed my pain issues, intil now.
      Keep my in your thoughts please! I need all the help possible!
      Miller Fisher and CIDP
      Sick on 6/1/2003
      Diagnosed 11/2009

    • Anonymous
      December 19, 2010 at 2:20 pm

      Unfortunately, the vomiting is probably a withdrawal symptom. Any time a person is on that much pain medication there needs to be a slow tapering down process, just like with ‘roids. I would advise you to seek out a pain med specialist in your area. Nerve pain is very real & they will understand that.

      I have found that many dr’s are getting very stingy with pain meds. I think it’s from the increase in rx drug addictions. A good friend of mine recently went through 2 back surgeries (in less than 2 months) & had extreme nerve pain for a year before her insurance company would cover the surgeries. All that time she was on very high doses of pain meds. Now her dr is freaking out about it & is limiting her rx’s. If she goes through her meds (what the dr deems) too quickly then she is out of luck for the rest of the month. After seeing my friend suffer so much I can sympathize with your situation.


    • Anonymous
      December 19, 2010 at 8:50 pm

      I’ve met one lady with CIDP who is hospitalized for [B]5 days[/B] every month for [B]50 grams of IVIG.[/B] She’s given IV morphine, predisone, benadryl–what ever is needed to handle the pain, nausea, side effects. The floor nurses after 8 years all know her and the neuro comes by to make sure all is done well.

      I’ve had quite a chat with her at CIDP meetings and she’s done this protocol before in another city before coming here.
      This is the only way she can have the IVIG that gives her strength for the rest of the month.