IVIG Update 6/26


I arrived at the hospital a little later than usual at about 7;15 or 7:30 just as they’d opened the outpatient sign in area. I like to try to be the first one in because regardless my infusions take so long I am always the last person out. In 5 visits thus far this has been true everyone leaves before me, sometimes it empties out early in fact and I’m left alone with the nurses. That’s the worst because that’s when they begin bringing ER patients in here and every once in a while they mistakenly send in someone with a very contagious disease like the flu which I have no immune system to fight off so it puts my life in jeopardy when they do that. It really irked me when they did put someone with the flu in here and what does this woman who is sick do even though I have a bracelet that mentions my disease for ambulatory purposes….she sneezes right on me the autoimmune patient. I was sick due to this for a few days and had it gotten any worse I might have sued for such negligence.

Anyway this post is about today’s visit and today I have 3 people in here getting infusions alongside me 2 of them are getting chemotherapy, 1 is getting blood, and I’m getting IVIG which is antibodies from other people’s blood. It’s quiet beside the constant beeping of one ladies machine she must be blocking or kinked up her IV constantly for it to beep so damn often. But she’s old so I don’t blame her, who would? Not me she probably can’t help it and just wanted to grab an item out of her purse to be more comfortable. I know I’ve set my IV alarm off more than once stubbornly reaching for my laptop to type an article or poem or if I’ve come up with inspiration for my book. Now that her alarm is off it’s nice and quiet in here as I await yet another bottle of this IVIG which weakens me to no end. You’d think one would feel strong after getting all these antibodies but it makes me feel terribly weak and nauseated.

In fact today I had my first reaction to IVIG unfortunately which was a fever, not a high fever only in the high 99’s but I normally run a steady 97.4 or so. So for me it was HOT HOT HOT and I could feel it as I was sweating profusely. As beads of sweat slid down my forehead and were absorbed by the padded portion of my Axon Optics glasses which have Bora frames they’re an amazing asset in the hospital along with the Bose 20i speakers I know I constantly promote these two items but I love them dearly and use them both daily. Back to the point I am still getting my infusion and the end is quite far away I still have several bottles of IVIG to take in before everything is alright.

I really do hope this stuff works it is hell on my body. I desperately want it to work so that my neuropathy will be gone or at least fixed somewhat and I can have a full physical recovery. I sure so appreciate all the great nurses that run this infusion unit. I know them all well by now so I work as hard as I can to always remember to be polite no matter what the situation in this hospital. You’ll get a lot more favors and make many more friends being kind than you will cursing, yelling, and constantly asking the staff for your medications. If they don’t have it ask for the pharmacy # and complain yourself or just wait the nurses don’t just pull it out of thin air! Thanks for reading my quick health update on IVIG as I truly do appreciate it!

As I down my last bottle of IVIG through this IV something horrible has happened and it always does….starting at 3PM this infusion unit doubles as an ER. WHY IN THE HELL WOULD YOU EXPOSE AUTOIMMUNE AND CHEMO PATIENT S TO OTHER POTENTIALLY SICK AND INFECTED PEOPLE? Whose plane was this I’d love to try some of whatever they were smoking at the time. The noise level goes up a ton, and the extremely ill patient like me complain far less than the ER patients being brought in even though we are in a dismal state compared to them. This time it’s a guy who stubbed his toe and it wont stop bleeding….next time don’t take aspirin after a wound jackass it’s a blood thinner. Sorry I am enraged because my pain is a 9 again and they take his little stubbed toe much more seriously than any neurological disease. THey just asked the guy if he wanted a note to get off work and rest, they would NEVER i repreat NEVER do that for someone coming into the ER for migraine or cluster headache,

4 thoughts on “IVIG Update 6/26

  1. A million hugs to you! First of all, I’ve only had the “pleasure” of IVIG for one three-day session slightly more than a year ago. I was so hoping it would be the fix for my myasthenia gravis. I made it successfully without any issues for all three days and earned the title of “Rock Star” from the nurses. Two days later I started having what I thought was a typical migraine. Mr. Migraine just kept increasing. I had three of my migraine tablets over 24 hours. No relief. I had been drinking tons of water and electrolyte replacement drinks nonstop for the days leading up to the treatments and following. No relief. Fever came on and things continued downhill. I eventually ended up in the hospital suffering from acute hemolytic anemia and had a blood transfusion. My headache from hell literally melted away during the transfusion! The doctors told me it was rare to have such a reaction, but I am rare. 😉 They forbade me to have IVIG again.

    I’m leaving out what happened with exposure issues in the ER when I had to go in. All sorts of sick people surrounding me and my terribly wide open immune system. I know they have to deal with a lot of people, but you would think that at least one staffer/nurse would think about us being exposed to things we’d have difficulty fighting off.

    I had to have blood drawn today at a lab and some lady came in for lab work coughing without covering up. The eye roll, I gave her.

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