here that our concerns are real...IVIG IS a blood product, and the LAWS and PROCEDURES for handling blood products are VERY STRICT.

Please pay special attention to pages 11 & 12 in the following site.

http://www.primaryimmune.org/pubs/nurse_guide_igiv.pdf

While what the nurse did was 'expedient' -a way to get it done, I really think you should call the source of the IVIG and just ask questions....explaining all that happened -in set up and in infusion. It mite not be the nurse's fault, merely that she's not had up to date training on what a Nurse CAN AND CAN't DO. So many other factors come into play, we won't play with them, OK?
Promise me, that you will call your prescribing doc, the neuro right? And, just ask IS THIS THE WAY IT SHOULD BE DONE? You check that other bag of IVIG in your refrig, now please, and IF IT too is leaking. YOU CALL THE COMPANY/SERVICE NOW [they have pharmacists on call 24/7] and someone will call you back ASAP. REFUSE NOW that bag being put into ALAN! I trust others here, I believe I did receive a contaminated bag/batch [AT a hospital, no less?]. ALAN's life is too precious to you, and thus, to us...to trust in possible human error. Stuff, does happen. This kind of thing, with all the regs on IVIG, shouldn't.

Please, call your doc, and the IVIG supplier, who is it? Gammagard, Gammunex? Whoever...I can get to you the web-sites and 800 #'s in a flash, just tell me which who? The manufacturers really DO want their products into any patient in the safest, fastest [as safe] and most professional way! I've dealt with these guys, and really once you get them - they can be really really good sources of support!

I hope we all hear from you soon, usually if anything icky happens, it's in the first 2-3 days after an infusion...could be the first or the second.

I don't want you to panic, I just want you to be SURE you know what you REALLY need to know about getting it safely!

's to you both! - j

Wow, I had no idea.

Alan just went to bed and thankfully, he seems fine.
I watched her do everything. She used sterile gloves. Everything she opened was sealed up and while I don't know about the leaky thing, she did indicate that it had to have come from the pharmacy's end.

Actually, Alan thinks she might have accidentally done it when she hung the bag over the iv pole. As I think about it, I took the bag out of the fridge one hour before she came and hung it on the iv pole. So it was not leaking.

When she took out the sterile tubing and attached it to the bag, she was doing stuff so fast I can't even begin to tell you. When she took the long tubing and inserted it into the Gamma bag, she said: "uh oh, there's a leak, let's see if we can stop it, do you have any tape?" I immediately got the some strong sterile tape that I use on Alan bandages (I never put this tape on his skin, it's too strong, but it's got a good adhesive to it, but, unfortunately, the tape didn't do what we hoped it would. That's when she got the idea of getting the bag of saline from her car.

I know for a fact that I took the Gamma Bag out of my fridge and hung it on the iv pole. There was nothing leaking, so there was no contamination.

Want to know what I think? I think she poked a tiny hole in the botton when she tried to screw in the tubing. I saw her pushing and screwing the tube in and she was having a hard time. I think she did it and didn't want us to know.

But when she transferred the gamma, she really did everything wearing gloves and opening up new tubing, etc.

And nothing touched the air, I watched her the whole time.

And, you will be happy over this......the girl we had yesterday, her name is Magalee, she will be our permanent visiting nurse. We arranged this yesterday.

So I think Alan is okay. Hopefully.


AND IF THE BAG WAS NOT LEAKING AFTER I HUNG IT ON THE POLE (BEFORE SHE ARRIVED), IT HAD TO BE SOMETHING SHE DID, RIGHT?

AND THERE'S NO OTHER BAG IN THE FRIDGE. Today was the second infusion. Next month we do it again.
Melody

P.S. When she saw that the bag was already mixed, she commented, "oh, it's mixed already, I have never done an ivig where I didn't have to mix it first", I replied, "yeah, everybody says that, but we have never had to mix anything, it comes already mixed".

I just took the Gamma Bag (the one with the leak), out of the plastic bag. I took two photos.

Look at the left part of the picture, (that's where she tried to hook up the tubing), see if you can see how this leak COULD HAVE HAPPENED!!!

Oh, just to be clear, when she was about to do the transfer, I asked her, "can't you just tear a little hole in the top of the gamma bag and pour it directly into the other bag"? and she said "Oh my god, no, I can't do that, this has to be a sterile environment".

and you gimme Pictures?! KEEP THAT BAG...That's nurse error...re-training required?
Believe me, I can SEE that 'poke' for better way of putting it? Put that leftover bag in a double-bag set of zip-lock bags and tote it to Dr Fred or the neuro ASAP. [putting it in the fridge-just to keep other new junk from accumulating wouldn't hurt] YOUR docs have to SEE the bag. no ands ifs or buts.
I am glad Alan is fine so far, is he getting more tomorrow? Call if you can your doc[s] tomorrow AM and just ask IS THIS NORMAL? I am not gonna bet here, cause I know it isn't. Any headaches, rashes, nausea, or heart-racing feelings, even strange breathing feelings....you call rite away, Promise.
Yes. This as I've said before IS serious stuff. It may be that your next nurse is going to be different. YOU need to think not HOW NICE THE NURSE IS...YOU NEED TO THINK of HOW SAFELY THE NURSE IS ADMINISTERING IVIG to your precious ALAN! Professional-following safety precautions=SAFE, Nice is JUST a bonus! Trust me on this!
Having gotten a bad infusion [at a hospital no less] I 'think' I do know the difference...that bad infusion could have killed me-the hospital nurses got -re-trained as a result of my complaints - they kept telling me after that 'they'd admitted 2 this mo w/reactions, next time 3 this mo w/reactions-so I guess my grumps did some good [also a rebate on some tossed IVIG {I did cry seeing such precious stuff go into the bin?}. So I am still here to give you my advice of caution. Upon reflections, I don't think I can agree if I break out in sweats or get overall chills and goosebumps at the thought? None of us ever want to GO THERE IF WE CAN HELP IT!

When ya crawl inta bed, just sorta give ALAN a half-hug from me? That he's OK is the most important thing!

Alan is going to Dr. Fred's tomorrow morning. Dr. Fred is not there, just Frank the paramedic who takes everybody's blood. Should Alan take the bags (I zip locked them each in separate zip lock bags).

I can write a note explaining what happened.

Now I know my husband. If he is feeling fine, HE'S NOT GOING TO WANT TO BRING THIS TO DR. FRED'S OFFICE. I know Alan. He just won't.

I'll just have to make this a wait and see thing.

Right now, they are both sealed up and in my fridge.

I am NOT GOING TO SLEEP MUCH TONIGHT. Not after all this scary stuff.
Melody

in 97% of whatevers, NOTHING happens, I just got lucky -therefore gun shy?
But, by keeping that stuff and showing it to Frank, I'll bet cha dollars to do-nuts that HE will go WHAT? or the like...maybe not even say it out loud, but the eyes WILL widen or narrow ...I do believe that. The note of what happened is good as well. That way, YOU will have a record of what happened from your viewpoint and the pics! GOOD there!

I simply wanted to warn you that at times really bad stuff can happen, no matter how well informed we try to be. Its not usually anyone's fault, just that they're not trained or up-to-date on the rite procedures and all. It can be scary--you just have to know when to say NO WAY! This is not right!

I truly don't want the 'odds' to catch up to Alan with his conditions in a way that hurts HIM and YOU.
That then MAKES YOU the one who has to be the Watchdog, so to speak. I know you can be, and are that 'watcher'...but often there are more 'things' to it all than you have thought. There are. I will be more than glad to help you. BUT I have to warn you....it is information YOU will have to memorize for the 'just in case' scenes...not needed now...just in the 'memory bank' so should problems come up...IT's there in your 'recall memory bank'! It can avoid soo much hassle in the long run?

- truly - j

Want to know how easily influenced I can be. When I read all the posts, my mind began playing tricks and I imagined Alan getting all sorts of reactions to this infusion.

I tried to go to bed, it was 12 a.m. and Alan starts moaning. I bolted straight up and said "my god, what's wrong, are you alright?" and he said "no, my feet hurt". I thought about it and I said "oh, maybe the nerves are healing because I read that if they heal they have to hurt first".

As he is igetting an infusion, he feels just great, he even remarked to the nurse, "this thing must be working because my feet are not in pain". She said "you won't believe how much energy this will give you".

He didn't even take a nap and he had just taken a benedryl.

So now fast forward 7 hours later, and he's in bed, and when he moaned, and said his feet hurt, I just massaged him like I always do. He said "no, you have to sleep, and I said "I can't sleep if you are in pain". and he said "but I'm always in pain, that's nothing new". I really want to give him the b-12 because I have no more burning, or anything. AND THE NURSE WAS ABSOLUTELY FASCINATED ABOUT MY TAKING METHYL B-12.

But I don't really know what I should do. If his nerves repairing, then they have to hurt first, right?? they have to wake up??? I explained this to him.

I just didn't want any reactions to the antibodies so I kept checking him and massaging him. He was in heaven with the massage but he couldn't sleep. I just gave him a benedryl. He took the first one at 4 p.m. so it's 1:30 a.m. now so it just might make him sleepy enough to go to sleep.

I'll see how he is tomorrow. I will have to decide what to do with the bags int he fridge and the note I typed up.

I have never had to face anything like this. He's been in pain for 15 or so years (and it was really really bad 4 years ago), so when he got the IVIG, we thought "hey we have a shot here". But this shot will take longer and there might be further side effects.

Oh, and this is important. The bag of gamma said to infuse over 4 hours.

Now every time a nurse comes here, she reads the instructions and Alan always says: 4 hours, right?, that's what the bag says.......and EACH AND EVERY TIME, the nurse goes into the explanation that ...even though it says 4 hours, it goes 10 grams over one hour, so you are getting 30 grams so it can really take 3 hours" So I always pipe in "No, it says 4 hours, he should get 4 hours and the nurses always smile and say 'they are being extra careful, believe me, if you were going to get a reaction, it would have been in the first 15 minutes, that's why the first 5 are always given in the hospital so they can monitor you. They already know you tolerate it.

She was in my house almost 4 hours. Yesterday, the nurse Magalee did the full 4 hours.

What is with these nurses and 4 hours. Why do they want to do it in 3.

I mean, ALL OF THEM GAVE ME THE SAME STORY.

It's like a mantra with them.

so I'll update after tomorrow.

Pray all goes well.

Love Melody

Keep the bag....do not surrender it to any doctor or the infusion place.
They will try to take it away from you---it is evidence. And keep all tubing and the saline bag also.

If something should result with Alan---and it might take days to show up...
that bag is all you have.

And write down exactly what happened... all the details you recall.
And keep a copy of that too. The time and date the infusion was given,
all of it.

We all hope nothing will happen, but if it does, you need to be prepared for
any legal consequence. People in good health generally may not be at risk for an error
like this....but if mrsa got in there...it might be a different story.
The seminar I attended last Friday had slides showing a desperate man doing his own
occipital (back of the head) blocks with a syringe...no aseptic (clean) technique...he just shot
the lidocaine into his HAIR covered skin... The doctor showing this slide remarked that it was a miracle this patient
did not have an infection yet!

Mrs.D. Here is what I did!!! Last night I wrote the following note to Frank, the paramedic who does all blood work or Dr. Fred:

--------------------------------------------------------------------------

Frank:

Alan had an IVIG infusion yesterday. Date of infusion 5/22/07

I took the bag of GAMMIMUNE out of my fridge 1 hour before the infusion. I have been told to do this. As I already had the IV pole set up in the living room, I simply hung up the bag on the pole. THERE WAS NO LEAK.

When the visiting nurse came to our home, she opened a pack of fresh tubing and she attempted to connect everything. She then said “Oh there’s a leak”. There was no leak when I hung the bag on the pole.

So she tried to tape around the connectors. Did not help. Still a small leak.

Then she went out to her car and got a bag of Saline.

She emptied the bag (via long plastic tubing), into the sink. And she then took a large hypo syringe thing and transferred the Gamma stuff into the empty saline bag.

All the while, she wore gloves.

The people on the neuropathy board told me to give Dr. Fred the two bags and tell him what happened. They are afraid of contamination.

How do we check for this??


Melody ------------------------------------------------------------------------

Now, Mrs. D. because of what you said, I kept the bags in the fridge. I just gave Alan the note to give to Frank, so Dr. Fred could see it, know what happened, and they can put the note in his file. Better safe than sorry right, and now we have it on the record.

The only side effect of this infusion was that he was exhausted when he went to bed. This happened during his first infusion in he hospital but they said that was normal, (to get a little headache and they gave him tylenol).

Last night his toes were driving him crazy and by 1 a.m. he still could no sleep so I gave him a benedryl. It did the trick. He seems fine this morning, just a little tired.

Now this was his 8th and 9th infusion and he took the benedry and two tylenols 30 minutes before each infusion.

The ONLY DIFFERENCE (other than the hole thing) in yesterday's infusion, was that she did it in 3 hours, explaining that 3 hours was fine (like they all say) and of course we said 'but he's supposed to get 4 hours) and she went into her spiel about 10 grams per hour so he got 30 grams so 3 hours is perfectly fine.

Now what exactly am I supposed to look for if he does indeed get an infection.
I would think fever, chills, I DON'T KNOW WHAT ELSE TO LOOK FOR.

Does it hit you like a ton of bricks, do I see any visible signs.

Please let me know so I can keep a watchful eye.

And do you think I should call up Marathon Visiting Nurse Service today (the contact person there and myself have a very good relationship. WE speak to each other about when the nurse is supposed to show up, etc. She is wonderful and she calls me Miss Melody and we laugh. So she's easy to talk to.
Do I tell her what happened (just the facts), or do I said "this nurse should NEVER HAVE DONE WHAT SHE DID, SHE PUT MY HUSBAND AT RISK. BLAH BLAH, or do I say "I would just like to tell you what happened. There was a hole in the Gamma bag and she did an amazing job of transferring the gamma from one bag to another." See, this tells her what the nurse did, without ME GOING ALL JUDGMENTAL ON THE PHONE.

I don't want any problems. with this nurse. We won't be having her again, so can I just calmly explain the facts and say "we were amazed that she was able to rig up a transfer so Alan got the infusion"

See, I know how to talk to people, it's all in how you deliver the information. No ranting, no raving, just simply stating facts. I learned that from my father and I've used this method all my life. If you don't yell your information, the other side listens better.

I know you understand what I am saying.

Let me know, okay??

And thanks much.

P.S. Because there was no hole when I hung up the bag on the IV pole, do you think the nurse accidentally punctured the bag. She really used all sanitary protocol during the whole transfer.
And isn't MRSA in hospitals? How can it get into Alan, if the bag wasn't leaking when I took it out of the fridge?

Melody

Personally i think the third option is the best, you get across what happened but in a non threatening way, that is of course assuming that the person that you are talking to knows what the proper procedure is. Whats done is done but for future reference, everyone involved is being paid big bucks to do what they are doing and supplying what they are supplying. If it isnt right dont accept it. You are doing all you can at this point to observe how he reacts and to preserve your evidence. I would also print up this thread also as proof of what went on since you posted several times to show the time line.