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Old 04-04-2007, 10:41 PM #11
GUMBY GUMBY is offline
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MELODY,
From someone with a lot of experience with I.V.I.g. and home care
1- orders from your doctors will be printed up with the type of gamma globulin. It should be the same as Alan received in the hospital, the amount to be given in grams, the time frame or cc's per hour may be included. If it is not then you can check with your neuro office. I think you said four hours right?
The one thing then it has to be four hours not one, two nor three. The biggest problem I have encountered was almost every nurse, started out ok and then the same pattern started of upping rate. Don't let that happen. Just because a b/p or pulse is stable, which is fine and good, it can be the after effects that can cause the problems with headaches etc. If you can get a pump all the better or the nurse will use the flow dial. The biggest problem is rate related. Keep you eye out for this as that was my biggest problem with home care. People can be nice, doing the job right is what you need. The nurses don't worry about, they are usually doing paper work also. They have to follow the orders. Too quick a rate= problems for patients. Otherwise your on track. The Tylenol and Benadryl, the nurse usually wants you to wait for her to get there, so she see one take it. Good luck.
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Old 04-04-2007, 10:47 PM #12
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PS hydrate good the day prior and during the infusion, water, not caffiene. Good to flush, better to start i.v.
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Old 04-04-2007, 10:58 PM #13
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Default Gumby as one who's been getting ....

IVIG for 3 years now, it's the balance of pre-meds and infusion rates that are the KEYS. Not enuf or too much of one or the other can give you either/or the headache from DEEP SOUTH [sorry those in the South, I mean the other kind of south..] or the 'runs'. Nurses should know what to do..that's why I'd posted that Immune Deficiency Nurses guide in a prior related post...IF they don't KNOW and do That stuff.. well, snuff isn't UP to par! It's the good nurses who plain old know the differences about IVIG in particular who are, in my book, VERY SPECIAL! I for one, appreciate the 'art' of the nurse and the processes. - j
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Old 04-05-2007, 10:16 AM #14
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Default A bit more on rate....

In regards to rate - my two cents - as mentioned above - its really important - when I was having my first five rounds in the hospital (as a day patient) one of the nurses stepped the rate up without my realizing it from 4 1/2 hours to 3 hours - I became disoriented and didnt even realize what was going on - went home - slept a couple of hours - then woke up gasping for breath with chest pain - immediately called the doc who said without asking any questions - how long was the infusion - then said - DONT ever let them do that again - you're having side affects - luckily I didnt have to go back to hospital but was very careful from that point on...

Home nurses do tend to try to speed up the infusions too - BUT I watched them like hawks -learned the hard way - it does make a diff - might not during the infusion but the next few days, as Dahlek said - could be real bad - not to mention serious side affects that might toss one in the hospital...
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Old 04-05-2007, 07:12 PM #15
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Okay, here's what I did today. I was concerned from all the postings I have read about the need for a pump during an infusion, and the fact that the BioScript Infusion Company said "no, you really don't have to have a pump", and the nurse I spoke to on the phone said the same thing, so, just to make sure, I phoned up Alan's neurologist and spoke to Zoya. His neuro is ill and won't be back until the 11th, and we have an appointment with her on the 12th. I told Zoya that I just wanted to make sure that Dr. Goldfarb was aware that the infusion company is not using a pump but that they will be using an IV drip. Zoya said that they were completely satisifed with the company that does their infusions and that they never had a problem with anyone and that I should not worry. She said she couldn't contact Alan's neuro because she won't be in the office until the 11th.

So since I can't do anything, we will just have to see what happens on Monday and Tuesday and how Alan reacts. He had no problem in the hospital because the pump broke and they just did the IV drip. He was fine on the drip. During his 5 day infusion the pump broke on the second day, so after that he had 3 days of no pump, and only an IV drip. They monitored him and he did just fine!!!

So Monday when the visiting nurse comes, I know to look out for any changes in the infusion rate. It should be 4 hours and she shouldn't change anything to speed it up, right?? The guy at the infusion said they start nice and slow in the beginning. They should know what they are doing, right??

Oh, the infusion pharmacist called us up today advising us that the package is being delivered via Fed Ex on Saturday and for me to refrigerate the meds part of it. I had a nice chat with the fellow. So tomorrow or Saturday, the visiting nurse should be calling us up to set Alan up for the infusion.

And now to more important stuff!!!MY NEW MICROWAVE CAME TODAY!!!
I had to get rid of the other one because it interfered with the tv signal, and someone told me "it looks like a leakage, so get rid of it". I had only paid $5.00 for it two years ago, so I tossed it and have been shopping around online. I went to sharp.com and got a 1.6 cubic microwave with all bells and whistles and FREE SHIPPING FOR $79.97.

Now can you beat that??? It came today. I was so nervous when I put a glass of water, (Alan was standing in front of the tv set ready to tell me if the tv signal screwed up). So I pressed Start, and looked at Alan and he goes "WEll, we still have a signal". Thank goodness. I can now cook in 5 minutes instead of 3 hours. How cool!!!!!
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Old 04-06-2007, 12:51 AM #16
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Melody,
If Alan's time frame was four hours in the hospital or that is what the doctor said re running the I.V.I.g. that is what you stick to your guns with. You will be the advocate for Alan. When the nurse calls, gives the heads up of the time frame. I agree with what kmeb said, home care tends to increase rates. I also learned the hard way and do not want anyone else to have to deal with that. You may have a great nurse with no problems and I hope that is who shows up at your door. We with prior experiences are just giving you the heads up.I think these nurses have x amount of cases to deal with. Don't let it be your problem, stick with your time frame.
Starting out nice and slow is good, it is not all about starting out, it is about running it at a safe rate and how you finish, Even if pulse, b/p stay stable dont let them crank up that rate.
Good luck with the microwave----cook away. Best wishes.
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Old 04-06-2007, 07:35 AM #17
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Hi Gumby: I love your name by the way!!!

When Alan had the first 5 rounds in the hospital (and I told the Infusion people this,they knew anyway because they had phoned the neuro's office) Alan had 6 hour infusions over 5 days (most without a pump).

When I asked the infusion guy (and I checked with the nurse too), and the infusion pharmacist yesterday, the infusion rate is 30 grams over 4 hours.

Now why they are doing 4 hours and not 6, well, I don't know, but I discussed this with the nurse and she broke it down for me and said 30 grams over 4 hours is just fine. And so did the infusion pharmacist. Dr. Goldfarb wrote the prescription so I gather she knows what she is doing!!!!

And you better know that when that nurse comes and hooks him up, I'll be making sure (quietly, politely, and not rudely), making sure that she keeps it nice and slow.

Anything else and I'll hit her with my batch of blueberry,honey, and maple flavored muffins. This is all in one muffin by the way. The flavors blend and Alan goes nuts. THEY REALLY ARE TO DIE FOR!!!!!

Oh, I do love my microwave. Do you realize that I had been cooking and roasting and re-heating in my oven for a whole week. Now how spoiled is that? This gadget has a melt, soften and other strange buttons and the front looks like something out of NASA. I love anything technological. Now as far as Alan goes....you should have seen his face after he hoisted up the microwave and put it on the cart and opened the door of the micro.

All the paraphanalia is inside, with the glass dish, the booklets, the styrofoam. Alan took one look, waved his hands and said "that's it for me, you figure it out'. The guy is great but he can only use the remote on the vcr. Gotta love him!!!!

Can you imagine if I had been born Amish?? lol
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