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-   -   Alan's IVIG bag had a hole in it!!!!!1 (https://www.neurotalk.org/peripheral-neuropathy/20207-alans-ivig-bag-hole-1-a.html)

MelodyL 05-22-2007 04:10 PM

Alan's IVIG bag had a hole in it!!!!!1
 
Right now, the visiting nurse is in my kitchen jerry rigging a new bag to hang on the IV pole.

When she came in, I gaver her the bag of Gamma and when she tried to connect everything, she said 'UH OH, IT'S LEAKING". And she has never had this happen before. I gave her some strong tape, she tried taping and sealing it but when she turned it over, it leaked again.

So she went out to her car, got a bag of Saline Solution. She is standing over my kitchen sink draining the saline bag, then she will infuse the bag with the Gamma from the leaky bag and HOPEFULLY, ALAN CAN GET HIS 9th infusion. He had 5 in the hospital, two at home last month, and today is the second of two days. So it's his 9th infusion.

They are laughing in the kitchen. I gave her a clean bowl for any excess and she is moving the solution from the original bag of Gamma into the (now empty) bag of saline solution.

Let's hope this works.

oh my!!!!

Melody

BEGLET 05-22-2007 04:24 PM

Melody!
 
IVIG needs to be mixed and poured into bags under completely sanitary conditions - was it the bag of IIVG that was leaking and shes putting into another bag????????? Dont want to alarm - but the last thing you want is any risk of contaminiation!:eek:

mrsD 05-22-2007 04:29 PM

Do not use if
 
sterility is compromised!

The infusion supplier should replace it. How did it start to leak? Around the tubing, what?

I agree with kmeb....do not use!

dahlek 05-22-2007 05:10 PM

Important!
 
HAVE THE NURSE CALL THE PHARMACY NOW!
Do not pass go - just do it!
YOU DIAL SAY IT"S AN EMERGENCY AND MUST SPEAK TO A PHARMACIST!
It's obvious the nurse really doesn't know the protocol. The pharmacist WILL!
We all know you need ALAN, and thus we need you!
Please don't delay? PLEASE! - j

Silver Swan 05-22-2007 05:57 PM

Oh, dear, gee whiz, Melody!
 
Melody:

Please let us all know how this emergency turned out. I am sure we all are alarmed about the infusion not being sterile. Worry, worry. Biting nails.

Shirley H.

MelodyL 05-22-2007 06:47 PM

Okay, everybody calm down. Alan has about another hour to go in the infusion.

This nurse was marvelous. And she was sanitary in every single step she took.
She took a bag of saline out of her car (it was sterile). She then used all new sterile tubing.

She took out a brand new sterile (big) hypodermic thing).

She emptied out the saline bag and she took the gamma out of the leaky thing and she put all the solution into the (now empty) Saline Bag.

So in essence, she transferred from one sterile environment to another.

The funny thing was when we tried the tape (the leak was on the bottom of the bag (as it hangs from IV Pole), and when the leak wouldn't stop, she immediately turned it upside down so it stopped leaking (we didn't want to lose any of the Gamma).

So I said "why not use my glue gun and seal the leak and then we use the tape). She laughed and said "No, don't worry, while this has never happened before, I have a bag of Saline in my car, I'll just empty it and transfer the Gamm into it." And that's exactly what she did.

Then she cleaned up my kitchen counter and you would never know there were bags hanging from the cabinet and dripping into the sink.

So what happened afterward????

I fed her Teriyaki Chicken, my patatas, some brocolli and my muffins.

She was in heaven. She's inside right now talking with Alan. They are having a ball.

So this CRISIS turned out not to be a crisis.

Take care and thanks to all of you for being so nice.

Melody

BEGLET 05-22-2007 06:59 PM

Ivig
 
Please call the pharmacy and the doc - the pouring etc has to be done in a completely sterile envinronment - not a kitchen.... there are very strict regulations regarding this... in fact - a bag of IVIG should never be used at all if it has any hole or leak of any kind - but refused.... its Alans health we are worried about....

cyclelops 05-22-2007 09:18 PM

IVIG, IV bag leaks
 
Melody

I am an RN...what she is doing is totally WRONG!!!! He can get septic from that..it is likely contaminated. I want you to call the nursing agency immediately and your physician as well.

I can't belive some RN would be that stupid. I am sorry to be so blunt but that is like using a dirty needle, even worse.

I am so mad!!!

cyclelops 05-22-2007 09:28 PM

Mel

That bag was contaminated the second that it got a hole in it...that moment. Whatever caused the hole penetrated into the sterile fluid in that bag....it could be anything, and no antibodies in IVIG won't kill it....

She simply transferred contaminated IVIG, into a sterile bag, using sterile equipment...but that is no help...the contaminant is already in the fluid.

Alan will likely be OK, but this is horrible practice!! On the other hand, he could have staph or strep or e.coli or God knows what, in that bag...whatever was in the frig, or pharmacy, or vehicle, that the IV bag was sitting in before the leak was discovered....whatever was on her hands when she handled the bag. If you have the IV bag that leaked keep it. It could be what you need to track down a germ if Alan does get an infection. Septicemia is very dangerous.

This is utterly unacceptable. No nurse in her right mind would do this, no matter how nice she is, she risked a patient's life. I am even more peaved.

I did home care nursing for years, and this just blows my mind!!

IVIG is very expensive, however it is not worth saving costs over a patien'ts life...ever! I can not tell you how angry I am!!!

cyclelops 05-22-2007 09:56 PM

Mel

I am still seething. Sterile procedure is one of the FIRST things nurses are taught. It is repeated over and over again thru out your education....then when you are hired, they go over it again...every nursing agency has a procedure and policy written regarding this...this is so elementary, it makes me wonder if your nurse is really a nurse. You are usually required by your employer to demonstrate sterile technique every year in a skills test.

This could not only cost her, and should cost her her nursing license, or at least her job. Her judgment is so poor, she needs to start all over...step 1 of training.

This could cost your home care provider their license or certification, certainly if the state or joint accreditation heard about this they would immediately discipline or fine the agency. It is THAT serious of a screw up.

Feel free to PM me for more info. For all of you....do not let any one ever stick a thing into you that is not sterile....no double picks with a needle....no leaking IV bags or tubes....Even a leaking tube requries dumping the bag, as stuff can travel upstream. Think of how many germs live on the head of a pin...

You should call the nursing agency's oncall number and you tell them what happened now...it needs to be written up....and you need a new nurse. I am sorry you are emotionally bonded with this person, and that is tough, but this action is so incredibly professionally obscene I won't sleep all night!!

Mel, you and Alan are the nicest people. This kind of stuff should not happen to you....It should not happen to any one. This is malpractice.

dahlek 05-22-2007 10:07 PM

Melody, please try to understand...
 
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!

:hug: :hug: :hug: 's to you both! - j

MelodyL 05-22-2007 10:15 PM

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".

MelodyL 05-22-2007 10:30 PM

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".

http://i73.photobucket.com/albums/i2...AGOFGAMMA2.jpg

http://i73.photobucket.com/albums/i2...agofgamma1.jpg

dahlek 05-22-2007 10:47 PM

Melody, I'm just starting to reply...
 
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!

MelodyL 05-22-2007 11:05 PM

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

dahlek 05-22-2007 11:27 PM

Melody, PLEASE SLEEP...
 
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?

:hug: :hug: - truly - j

MelodyL 05-23-2007 12:40 AM

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

mrsD 05-23-2007 04:10 AM

advice....
 
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!

MelodyL 05-23-2007 07:51 AM

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

HeyJoe 05-23-2007 08:36 AM

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.

MelodyL 05-23-2007 09:32 AM

Joe: Ooh, that's a good idea!!!! I'm printing out this thread. But Joe, while it says "Posted Today, or Posted yesterday", it never specifically states: "Posted March 22, 2007". I saved it all to my hard drive and I can print it any time I wish.

Jeez. imagine waiting to see if your husband come down with a MRSA type of infection. I don't even know what I'm supposed to be looking for.

When he got up this morning, I expected him to be all exhausted, all achy, well, I expected him to be SOMETHING!!!

He gets up, takes a shower, I get up and go over and put my arms around him and say "how are you, how do you feel"??? and he says 'oh, I'm fine,", I'm off to Dr. Fred's office to get my blood work done. This was his regular appointment for blood work.

That's when I carefully explained what the guys on the boards said and how we should just make a record of what happened in the kitchen, and we should save the bags in the refrigerator. I showed him the note I wrote, half expecting him to start yelling "Oh my god, they think I have MRSA??" (BELIEVE ME, HE DOESN'T KNOW WHAT MRSA IS). But he just said "oh, good, you wrote a note, I'll show it to Frank and he'll put it in my file.".

Let me say one thing. WHAT WOULD THIS MAN DO WITHOUT A WIFE??? I would just like someone to tell me.

See, this is where I get all emotional and hostile about my son who left home 5 years ago and couldn't care less about us because he is a gambler who also has aspergers.

Anyone else would call up their son and they would get comfort and phone calls and be told "mom, what can I do?".

We never get that and we WILL NEVER GET THAT!!!!!

Sometimes, it gets very hard to have all these health stuff going on (and believe me, you guys have it a lot worse than Alan and I), but sometimes, it would have been nice to have a son who gave a damm.

I guess I have to get over my pity party.

He'll come bouncing in the door any minute and I'll just massage him to death like I always do. I do Rolfing down his back and goes into heaven.

But I'll just wait and see how he's feeling.

Exactly what should I be looking for? (if the bag was contaminated).
Thanks,
Melody

Silver Swan 05-23-2007 10:03 AM

Wives
 
Hi Melody:

In answer to your rhetorical question "What would Alan do without a wife?": My answer is: "What would any man do without a wife?"

(Having typed that, dodging cyber bullets and tomatoes!)

So glad that Alan is doing all right this morning. Relieved hugs to both of you.

Shirley H.,

BEGLET 05-23-2007 10:05 AM

Melody
 
I would keep the bag too - as evidence - you dont know what may happen down the line - as Mrs D Said..... and again, contact those concerned.


ALso, the nurses try to hurry the home infusions because they want to get along on their schedules - again - the doctor sets the rate - not the nursing agency...... you need to mention that to your doctor too... it is not true that side effects only happen the first time - there is a chance of going into shock that is high with every the beginning of each infusion which is why they usually run it a bit slower at first and why with every infusion you get benadry and pain killers, to try to prevent side effects all thru the infusion - which can be made worse if the nurse tries to run too fast..... they are not following your doctors instructions and he set up the rate for Alan, not to accomodate the nurse.... they are trying to make their day shorter.... Alan is the patient and instructions are made by the doctors, NOT the nurses.......

HeyJoe 05-23-2007 10:21 AM

Melody in a few days it will have the date on the post. After it passes the today and yesterday stage. I really dont know what to look for except any rashes or fever or not feeling well.

As far as another comment from another poster what would men do without wives, there are many men, such as myself, who have to stay on top of things also or else it wont be taken care of.

I also commiserate with you about your son, I am having a lot of problems with my 16 year old and am desperately trying to save him, turn him around. Its heartbreaking.

Jomar 05-23-2007 10:59 AM

I would ask of all parties involved about the proper protocol -
of the drs time line infusion orders,
and what is the proper thing to do in case of a leaky IVIG bag?

Get that info in writing if you can.

but I really think the nurse?? did not follow correct procedures with the transferring.
I would think there should be some rules in place for this sort of situation.
she should at least called her office to report and ask how to proceed.

and how do you know that any residue might still be on your sink or counters?
You might ask about the clean up of it also, just to be sure.
I don't know if it could hurt you that way or not .. but..

cyclelops 05-23-2007 11:02 AM

Mel

It doesn't matter who poked the hole in, regardless of how the hole got there, it was a potential source of infection. You can't tape a hole in an IV bag...or a hole in an IV tube. You can tape connections of tubes to keep them secure, provided they are working to being with...you can not tape a 'leak' to stop it anywhere in the system....Forbotten!!!! NIX, NIE, in any language.

IVIG is given at x number of milligrams per minutes. If his time is 4 hours it is four hours....you may not know this but some agencies pay nurses by the visit...the shorter the visit the more pay they make, as they make more visits...they make exceptions for IV visits as they take longer.

IVIG is generally mixed by the pharmacy and delivered to the place of infusion. I had mine at an infusion center, which they insisted on me going to, despite being a home care nurse myself. Why? Because, one bag of IVIG contains antibodies from over 1,000 donors, and you never know when one of those donors may have some offending antibody which causes a reaction. usually people have a reaction right away, but not always.

Now the thing to do is watch for signs of infection, which are not the same as signs of infusion reaction.

This is not a minor error on the nurses part....what does she think she can do brain surgery too???

Alan likely has an immune system that can handle any germ he got, but you need to call attention to what occurred to you.

Call and speak with the nursing supervisor or director of nursing...not the secretary or scheduler.

Call your doc and let him know what happened.

You are likely going to be unable to prove how the hole got there and that is irrelevant...simply the fact that there was a puncture in the bag is enough to assume it is contaminated.

Transferring contaminated contents via sterile procedure is a joke.

Think of it this way....hm, some cockroach poop got poked into this bag and now I am going to sterily transfer the contents into a new sterile bag...(even though I am transferring cockroach poop contaminated liquid into a new bag.)

This is just an illustration, not what actually happened, but microbes are very tiny, thousands can enter in a pin prick. Millions enter our bodies everyday and we fight them off. Alan will likely not have any problem but if he does, you have the right to establish that this is how they entered. Again, who poked the hole doesn't matter....the dumb move was infusing it!

With people with autonomic neuropathy, they sometimes do not know they are sick with an infection....Just let your doc know. I would feel so much better...and call the Home Care Agency. This nurse needs to be corrected and realize that this is not appropriate practice.

Just give them the facts...Mel, write down the facts---do not say more than the facts....do not make assumptions---just the facts...

She hung the bag
A leak was found
She wanted tape to tape the leak
She transfered contents...blah blah blah.
Facts only....no assumptions.

Let them know about the infusion time being cut short....it is OK in some circumstances when you are being monitored....I was monitored with BP, P and Temp every 15 minutes, for every single bag I ever had infused....and this was at the infusion center....which was the only place they would allow me to have it infused...as it is a blood product. If orders say over 4 hours, and it is in the home setting, I would do it in 4 hours. It makes me wonder if allan got his whole dose...how much was lost in the leak etc.

Do not panic...do not accuse....again, write down what you are going to say, and just read your script.

MelodyL 05-23-2007 12:57 PM

I Just called the Infusion Company
 
Sorry, not the infusion company, the VISITING NURSE SERVICE, I always have to go through them.

I have a good raport with the woman who has been arranging Alan's infusion. I called her and she said "Melody, how are you, how did it go yesterday?"

So I told her EXACTLY WHAT HAPPENED. I didn't offer any comments on my part. I just stated the facts. I said:

1. I took out the bag of gammimune out of the fridge one hour before and hung it up on the pole.

2. The nurse arrived, attempted to hook up the tubes to te bottom of the Bag of Gammimune and exclaimed "oh, we have a leak".

3. She tried to tape it where the leak was (only a few drops came out). The tape was not successful.

4. She went out to her car and got a bag of saline solution and took everything into my kitchen, and she took a big hypo syringe thing and (while wearing gloves all during this process), she transferred the stuff from the Gammimune bag to the Saline Bag.

I then said "I don't know anything about IVIG but I do know this is a blood product and I just wanted to tell you exactly what happened".

Her reponse: "We ordinarily don't approve of this thing being done this way, it sounds like she found a solution to the problem of the leak". But we don't encourage this action" I said "okay, what happens next"???

She said "if there was contamination (note that I never mentioned the word,she did") If there contamination in the product, you might see a reaction within 24 hours" I said "well this happened last night ". She said "what time did the nurse leave"? and I said 8:45 p.m."

She said "I am giving you my cell phone number. Call me at 9:30 p.m. this evening and tell me how he is doing." I said: "I'm not trying to cause any problems, I just wanted to tell you what happened" and she said "you did the right thing, just don't tell anyone else".

I think she is just trying to wait and see if Alan has any reaction to what happened.

He just came home and he has a headache. He says "I feel like I did when I came out of detox, all aches and pains". He is going to take a nap.

Now this was the first time he got a 3 hour infusion. Ordinarily it's always 4 to 4 and a half hours. (And believe me from now on if anybody tells me "oh, it's okay to give him 3, I'll be on the phone to the visiting nurse service so fast it will make your head spin!!!!!

So I have no idea if this is why he has a headache. I don't want my mind to play tricks on me.

I'm not leaving him alone the whole day.

Tomorrow we have to go to Court.

Oh vey!!!!!

Everybody cross their fingers and toes that there was no contaminents.


Oh, by the way, Alan gave the note (describing everything that happened) to Frank and after he read it he said "Alan, I don't know what to tell you" and Alan said "just show this to Dr. Fred when he comes in this afternoon"

So I believe I covered all my bases.

If you think I should do anything else, please let me know. For now, it's a waiting game.

After his blood test,he went to NYC to pick up his check from the security firm. So I guess so far so good.

So guys, you are all updated and know everything I know.

Will let you know how it goes later on.

bye for now.

Melody

Jomar 05-23-2007 01:04 PM

LOL I like the part where the lady said "don't tell anyone" LOL
sounds like a bit of a coverup

at the very least the nurse should be reprimanded- whether Alan has any reaction or not.

They could be doing this to many other patients too and maybe those people don't have a forum to ask about it on.

cyclelops 05-23-2007 01:26 PM

Her reponse: "We ordinarily don't approve of this thing being done this way, it sounds like she found a solution to the problem of the leak". But we don't encourage this action" I said "okay, what happens next"???

She said "if there was contamination (note that I never mentioned the word,she did") If there contamination in the product, you might see a reaction within 24 hours" I said "well this happened last night ". She said "what time did the nurse leave"? and I said 8:45 p.m."

She said "I am giving you my cell phone number. Call me at 9:30 p.m. this evening and tell me how he is doing." I said: "I'm not trying to cause any problems, I just wanted to tell you what happened" and she said "you did the right thing, just don't tell anyone else".

Oh brother........


Ask to file a written grievance. You need to document. You can also call your state board of regulation and licensing or who ever oversees nursing licensure in your state.

Her response is utterly ridiculous. She should have told you to call your physician...they should have called your physician....they are busy right now, compiling their legal defense. Change providers if you can.

Big boo boo number 3 "don't tell any one" ...number 1 being giving fluids from a leaky bag..boo boo number 2 being 'skillfully and with the appearance of sterile technique", transfering that contaminant exposed fluid into another bag...Oh and there might be one more boo boo...I read IVIG is not compatible with normal saline. I am not completely sure on this one, but I read on pharmacy page on mixing it, that it is not compatible with normal saline...now please realize that not all IV bags contain normal saline....I honestly can't say off the top of my head what IVIG is mixed in. Keep all bags, tubes etc in a bag....don't monkey around with them.

A reaction to IVIG is not the same as an infection which could take a few days to brew up....the best way to find an infection of this sort will be to draw blood, CBC and blood cultures. Your doc will know what to do. I think you need to make it clear to your doc what happend.

Administering a fluid from a leaking bag, regardless of how the leak got there is an error. It is a medication error, this one being rather deliberate.

I will say it again...

No nurse is dumb enough to think for a minute that this fluid was still sterile.

Allan will likely be fine. In the remote chance he isn't, you need to have this incident documented.

Your doc needs to know what happend, and given the response of the infusion provider, I would get a new one....'don't tell any one' is not an acceptable answer to your question...it is exactly the opposite of what you should have been told. I am aghast.

Silver Swan 05-23-2007 01:47 PM

A further thought, Melody..
 
Melody:

It might be a good idea to print out your posting and then the posts from others on this Forum, so that you have a better recall of how things occurred. Just a thought.

Shirley H.

MelodyL 05-23-2007 01:50 PM

It wasn't the INFUSION PROVIDER who made the response.

It was the Visiting Nurse Service person.

I just took Alan's temperature (he had taken two acetominiphen as soon as he came home). His head felt hot. He has a fever of 101.

Now could this be from the IVIG or does this mean he has an infection?

Oh, I just checked the bag that she transferred the gamma into. The label on the bag says: 0.9% Sodium Chloride Injection USP 500 mL. She emptied this completely and then transferred the gamma.

He went to the doctor's office this morning, he told the guy who drew the blood all about what happened. They drew his blood.

Do I now call back Frank (the guy who took his blood and tell him that Alan has a fever of 101).

I really am trying not to panic here.

Melody

Curious 05-23-2007 01:56 PM

i would call frank.

maybe they can test his blood for other infections.

:hug: i know this is scarey melody. you are doing everything you can. all the right things.

lots of fluids for rocky. if he did get something...his body is fighting it. that is a good thing.

nide44 05-23-2007 02:07 PM

A slight rise to 101 is not panic time, Mel.
It is be observant and watch time.
Yer doin' all ya can. If he spikes high overnight
(103-104) go to the ER - don't wait for tomorrow.
But that probably won't happen.
If Alan keeps a low grade fever for 36-48 hours,
take him to your doc asap.
Over-cautious is not panic. Overcautious is concern.

MelodyL 05-23-2007 02:26 PM

We have no way to go the ER. We have no family and we are alone.

I just took it again and it's still 101. I gave him a big glass of water and I'm making him Tea.

Can this be from the IVIG infusion (as a side effect), or does this absolutely have to be from the hole in the bag?

I just want to get all the information.

Melody

dahlek 05-23-2007 02:29 PM

Melody....
 
The 'don't talk to anyone about this..' makes me concerned. 'Not approve of this being done this way' Also makes me concerned about how they have infused and handled the IVIG.
Do call Frank and be sure Dr Fred gets updates.
Dr Fred tho isn't the doctor who prescribed the IVIG, is he?
If it is, Dr Fred will be on alert.
IF the prescribing doc isn't Dr Fred, CALL THAT DOC with the same info you've given to Dr Fred. The prescribing DOC should be totally up-to-date on any issues that can go wrong as that is the doc who will be the one with primary responsibility along with the home service.
Flu-like symptoms [headache, lo fever, diarhea, and sometimes crampiness in the legs, rashes and vomiting] are often side effects of infusions. These are usually taken care of by pre-meds of tylenol, benedryl or both. Lots of tylenol or the like for headaches afterwards is the normal. They usually go away in 2-3 days.
These often are caused because the infusion rate was given too fast.
I can handle a lot more of the IVIG. I get mine in under 3 hours, but it took a long time to get the 'timing' of the infusion rates till it's just perfect-for ME.
You are trying to do all the right things. One thing you will NOT do is give the home service that BAG! Got that?
I'll check in for the updates I know you will be giving us - I'm hoping it's nothing and probably isn't anything. Should that change, it will probably change very fast - so be warned.

:hug: :hug: :hug: and patience for now - good person! - j

Which brand of IVIG did he receive - I'll post the full 'prescribing info' as soon as I know -

MelodyL 05-23-2007 02:46 PM

Thank god you wrote what you wrote, (about flu like symptoms, fever) might be the reason he has the fever. He has never had a 3 hour infusion before.

It took her till after 5:30 to start the infusion and she left around 8:45 p.m. (we were watching American Idol) and the bag was empty.

Now you ask for the brand.
Here's the information:
---------------------------------------------------------------------

OCTAGAM 5% 30 Gms (600 ml) (mix)
Infuse Octagam 5% 30Gms (500ml) IV over 4 hours daily x 2 days every month as directed by MD.

Pre-medicate 30 minutes prior to IVIG with Diphenydramine 25mg orally. Acetaminophen 650 mg orally.
Storage - Keep Refrigerated
Discard After 5/028/07
----------------------------------------------------------------------

Question: every nurse said "he is tolerating this vey well". Now when they say Tolerating very well, are they referring to "he's not going into shock", or "his blood pressure is not dropping", etc. etc.

Or is the fact that he got a fever the next day "not tolerating it very well"???

I just told him what Dahlek said about side effects of IVIG being flu like symptoms and fever, etc. and how the rate of infusion can cause these things and Alan said "I knew it, she stepped up the rate of infusion".

Now I have no idea if he's contaminated or what. I guess we'll wait and see about that.

What do I have to look for and how long??? A few days I would imagine.

This never happened before so I guess it's the getting used to all of this.

Oh, and Dr. Fred is not the physician who prescribes the IVIG. It's the neurologist. I'll write up everything that happened and fax it over to her.

THANK GOD I CAN TYPE 145 WORDS A MINUTE!!!!!! I never typed so many posts in one day in my life ......lol

Melody

cyclelops 05-23-2007 02:52 PM

On the fever-has he had one before after receiving IVIG?

Has he felt like this before, after receiving IVIG?

It is not uncommon to get a fever, low grade after IVIG, 101 is not low grade....it isn't real high---it is just kind of on the borderline of concern..101 in an adult is more concerning than 101 in a kid.

Just call the doc to be sure. If he had not had the bag leak I would be less concerned, with the bag leak, I am slightly more concerned...

Did you take an oral temp? What kind of thermometer did you use?

cyclelops 05-23-2007 03:03 PM

The rate of infusion yesterday, should have no consequences today.

The patient is essentially monitored at the time for a 'reaction' to antibodies from foreign donors, just like in a blood transfusion.

You see reactions, that are lifethreatening, almost immediately in transfusions....sometimes it is just to rapid of an administration rate...they just slow it down...usually this is preceeded by a severe headache or drop in BP.

A reaction, is not a bad thing in IVIG, it is just the body's response to this ton of foreign antibodies. It can be totally normal.

Now the detective work comes in as to whether or not he acquired an infection as opposed to having a normal reaction to IVIG. Some folks don't get fevers, I never had one...no problems what so ever, some folks do.

Blood pressure drops are indicative of a blood product reaction...that is why the nurse is supposed to monitor that while transfusing.

Stop posting, take a rest. Calm down...this is all manageable...

Call your neurologist. Ask to speak with her/his nurse. Tell her what happened. Don't go taking his temp every 5 minutes....every half hour will do...parameters change constantly you just need a trend. No more than every 15 minutes, you hear??? Mel, it is going to be fine.

I have horrible ear pain for some darn reason...(I mowed two acres on my garden tractor in hurricane force winds yesterday and I don't know if that is it, but I can hardly stand it and I maxed out my pain meds...I just happen to see the neuro tomorrow...he is going to be an ENT, lol) I am trying to keep an eye on posts, then lying down, then posting, then lying down...it is always something.

MelodyL 05-23-2007 03:53 PM

He has never had a reaction (other than a mild headache) to these infusions. And he has never had a fever. And he never had a 3 hour infusion either. They were always a bit over 4 hours. In the hospital they were 6 hours.

It's been almost one hour since I took his temp and I just took it, it's 99. It's a oral thermometer. And my mother was a nurse, so I know how to read a thermometer. And it's the old fashioned kind. Not the new digital one.

I disinfect it each time I take it out of his mouth. And I shake it down before I put it in his mouth.

I'm going to call the neurologist after I finish typing this. I don't expect to get her today. Should I call Dr. Fred and tell him about the fever.

Alan went there this morning for his usual blood work but AFTER HE CAME HOME, that's when he got the temp.

He just said that compared to this morning, he does feel a bit better.

Now I know I have to watch for fever spiking tonight and I will.

I just went to the pharmacy near my house to buy some tylenol. Would you believe I had no more tylenol in my house?

I was telling the pharmacist what happened and you should have seen the look on his face when I said "she went into the kitchen, hung the top of the iv over my cabinet knobs and did a transfer from the ivig gamma bag into an empty bag that was marked Saline". His eybrows shot up and he said "she did what???" "It's supposed to be done in a hooded environment, (or something like that). I said "yeah, I know, she wasn't supposed to do this".

He said everything single thing you guys said. I told him I knew all this because I go on the neuropathy boards and everybody knows all about IVIG. He told me to immediately call his neurologist and inform her about what happened. So off I go.

Keeping fingers and toes crossed.

And we have to go to Court tomorrow. Oh brother.

Melody

Curious 05-23-2007 04:15 PM

:hug:

a muffin will make him feel better. you to melody. :hug:

ya know..this thread is going to help others. a good lesson for all to learn.

i'm sorry you and alan are dealing with this. but if your gut hadn't told you something was wrong with the way things were handled... you wouldn't have posted.


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