Tenth IVIG Treatment

Today I had my 10th, and possibly final infusion. I say possibly final because my doctor is in the final stages of getting me switched over to Hizentra Sub-Q! I'm so excited!

The infusion went really well despite the fact that I have either pneumonia or bronchitis right now and am on another round of Levaquin for it! Anyway, I wanted to avoid the battles that we endured last time, and I realized that one thing I'd done which contributed to all of the conflict last time was that I had them keep it at 25 for a whole hour. I was pretty dopey from the premeds and I so when the nurse asked me if I wanted to stay at 25 for an hour I thought I had enough time left in the day to get my whole treatment in easily, so I said "sure, why not?". Because of that mistake it ended up being a very stressful infusion that time.

So this time I went prepared. I told my mom ahead of time what speeds I wanted and how frequently I wanted the transitions. I then wrote them down for her to show the nurse. Because I did that, there was no conflict, and I came up with an arrangement that's slow enough to take care of me without causing them to freak out. I had them start at 25 for 30 minutes, then transitioned to 50 for 2 hours, after 2 hours I had them go up to 75, and keep it there til I finished. I walked into the office at 8:30 AM, and left at 4:00, so I think we did well all-in-all.

Tonight after getting home and having my post-infusion cupcake reward, I took a benadryl, and some medication for my migraine that I've had since yesterday. The migraine is slightly improved, but is still a "back-burner" headache...meaning, it's still there, but I can deal with it.

I hope that I don't feel bad after this one, and I hope that the Hizentra is a good thing for me to use. I have heard a lot of success stories from those who have switched, and it could make my life so much better if that turns out to be the case for me.

Ninth IVIG Treatment

This isn't supposed to be a stressful day for me...at least, not in my book. The nurses have been hassling me about increasing the rate to 75 then 100 because they close up shop at 6:00. Because I didn't want to do it, they called my doctor and apparently my doctor is not in the office today so one of her colleagues who has never seen me called and said that they should give me the choice of either increasing the rate to get my full dose or cutting me off at 5:00 pm and sending me home if I want to keep it at 50. I'm a bit upset over this. I came in 1.5 hours early this time and according to my calculations it should take 8.5 hours total for the infusion. They started it at 9:00 and close at 6:00...that means it should be done at 5:30.

I agreed to let them bump it to 75, and I'm pretty confident that it will be done by about 5:00, since last time I came in at 9:30, started at 10:30, and they increased it to 75 at 1:00 and I walked out at 5:30 that time. My big mistake this time was keeping it at 25 for an hour. I wish these nurses had a clue what impact IVIG infusions have on your body! I think we need nurses with CVID to give us our treatments! :)

My mom's really mad about the other doctor saying that they should cut me off at 5:00. She walked down to my doctor's office to see if my doctor is in. 

Oh well, I guess if this doesn't work out I may end up having my infusions at home, or at the hospital. Of the 2 I'd prefer doing it at home...as long as I had a good home nurse.

Back in the infusion center...

Mom just called and the other doctor is playing the waiting game with her...telling her he'll be out to talk to her in 10 minutes and not showing up. I told her to just come back because there's no point in her getting upset in dealing with him. To be honest I think I can handle 75, I just really wanted to try an all-50 infusion to see how good I feel. I start working full time on Monday, and luckily my boss is being cool in that he'll let me work from home part-time and slowly increase my office hours. I hope it works for me.

..........................

Mom just got back from talking to the other doctor, and he said to my mom that the nurses at the infusion center "hear what they want to hear". He asked my mom which nurse he spoke to, and she gave the name. Apparently at that, he just said "aha, I know. She rushes people all of the time". He called back and told them to not go above 75 and to give me until 5:30.

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At 5:30 on the dot my infusion was down to the last trickles, and the same nurse who'd been giving me the stress was flicking the tubes to make sure I got every drop, so at least I did get the full infusion. I might go with the day admit at a hospital option for my infusions, it would be worthwhile to not have to deal with all of that grief.

Update

On Saturday I nearly fainted at dinner, and I think that was related to my infusion, and again early this morning the same thing happened. I've realized that my doctor cut my hydrocortisone level in half as of these last 2 infusions, and that may be why I haven't felt very good despite the rate being slower.

Dr's Call

My Doctor just called to talk to me about my infusion. She said that my insurance company will never approve me having my infusions at a hospital, and the infusion center is bending over backwards in allowing me to have it over the course of 9 hours. She also said "Most people do it in 2 1/2 hrs" and she nixed the increasing my steroid level idea, and said I'm just going to have to "power through on this". Ugh...I hate this kind of stuff. Sometimes I feel like she's very supportive and great, and other times I feel like I'm on my own.