Mel,
I hope Alan will be ok. I read quickly. If this type of care keeps up and trust me, I feel it will. Tell your neuro about this event. Do yourself a big favor for yourself and Alan, tell your neuro about these events. It is always the same old story with these home care agencies. I live in N.Y. and have been through it. Demand to have it infused at the hospital. I agree with cyclelops and as a nurse also am appalled at what these ding bats will do. It is not worth anyone's health to go through this. PS I.V.I.g. is not to be mixed with n/s and a reaction can occur at any time. I wrote about this prior to you because I know what they pull. If it is ordered for four hours case closed . They are not the doctor and reactions increase to the increasing rate. Period. I have saved my infusion bag when I had one of these dingbats leave a good amount in the bag, because she had another case. The look on my docs face was priceless and I took it right back home with me. When I became sick from one of the infusions and had to go to the e.r., the first thing they asked was, how fast was it run? It is the same old story with them .I'm just looking out for you guys and giving you the heads up. I talked till I was blue in the face with my request and still it would go to their way. True they get paid by how many cases they can run to. Don't subject Alan to this kind of care. Keep talking his temp and let the neuro know.

Number 2 - home infusion nurses should be MORE than thoroughly trained about administering IVIG....not just getting the catheter IN and chugging stuff into a vein....ASK a nurse HOW many patients they 'do' in any month of IVIG...not just 'pic' lines or the like, but especially IVIG. That is a nurse who's trained, experienced and in tune with the possibilities to that .02% odd chance of what can go wrong. The odds rise far higher and faster due to ignorance. When things go wrong, well ya feel like you've something WORSE than being run over by a garbage truck! Not only to you feel run over, but it makes doing without the IVIG look good?
Things to check for...see what the original prescription was for...if a particular brand...REFUSE any substitute! It is very legal to do so. The 'nurse' has to really be a 'licensed' nurse. You can look this stuff up w/your state medical board licensing commission. AND they have to be licensed in YOUR state, not NJ or CT. It's NY or nothing!
NUMBER 3 and last - let your neuro know ASAP! I'm assuming here that it was the neuro who wrote the script.... The neuro's liability as well and the infusing pharmacy and the nurse's liabilities are on the line here. That the home nursing company told you to 'keep it quiet sends off LOTS of bad vibes to my 'bat-ears', in a way. It's saying to me, that they are cutting corners that are simply NOT ALLOWED! It has to be your NEURO to either read the 'riot act' to that particular company or get your Alan another company. Let them do the 'he said/she said' stuff between them. It's gonna be the neuro who decides what to do in the long run.
A 'nice' nurse isn't what is needed-if they don't know the proper procedures or merely follow the company's 'rules', really doesn't do ALAN any good, tho nice helps. A TRULY EXPERIENCED and PROFESSIONAL NURSE is what is really what you NEED and nice is a pure bonus.
In closing, what I find a true sign of a good nurse is when they constantly say 'I'm sorry', when trying to get an IV line in...I've been poked enuf that it's like a disreputable junkie? and thus hard to get what's called a 'good line' or needle into me..AND I've got good veins, they're just scarred from it all. THAT is a nurse who knows it can HURT and cares that the whole thing is DONE RIGHT!
Give Alan a hug from me [if you're not jealous] I know he mite be feeling like a warm dog poop pile for a bit, but that sort of caffiene high that comes with infusions should kick in tomorrow?
Wishing you both pain free thoughts for the immediate and long term future! - j

Dahlek

After reading about your experience with IVIG it is making me wonder what really went on with mine....hmm. I didn't seem to a have any problem what so ever, now I wonder if it was strong enough or pure enough or consistent enough. I never asked what 'brand' I got, I just assumed it would be the same...

I never had a single blood marker of inflammation, however, a few months ago I had an extremely high ANA on Elisa, 2.37, and Elisa though unspecific has only a 10% false positive rate. They redid all the autoimmune testing and said it was all negative. I know one high ANA does not make a case for anything, but I am getting weary of all of my 'false positives', such as my PET scan. I mean how many 'false positives' can a person have? I wonder if that high ANA was to some antibody they have not identified yet...lol and I am sure my IgG lyme titer was still negative, despite it being positive IgM, and considered positive in New York state and many other states. If some docs don't like the results, they discredit the labs...I dunno. (I had a tick bite, and EM rash and physician confirmed acute case with rising titer that was aborted by amoxicillin for 20 days....no IV treatment) I have a million reasons to have PN....I wish they would just pick one at this point!!! I know that is irrational, but I do understand that is how we all get to feeling after a while.

Sorry, but I am having one of those 'pessimistic' days today...

I know finding etiology on 'idiopathic' is very tough, but when you get told something abnormal is a 'false positive' so many times, you gotta wonder.

Hi Everybody.

Alan is just fine. Normal temperature since 9 p.m. last night. Had a good appetite last night for dinner and a good appetite for breakfast this morning. Took his temp this morning. Normal. He feels fine and took me out for breakfast.

Right now we are going over our testimony for our court appearance later on this pm.

He is raring to go. I will be monitoring him for the next few days.


I also want you guys to know that I did indeed call the neurologist yesterday but she wasn't there so I left a voice mail message detailing everything that happened.

I never contacted the visiting nurse service again. They know what happened and it's all on their head now.

I saved all bags and tubes in separate zip lock sealed bags and they are in my fridge (just in case).

Alan has had 4 home infusion in total (after the 5 in the hospital). Absolutely every single nurse has told me "oh, he can do 3 hour" and every single time I point to what it says on the ivig bag and I say to them "it says 4 hours, I want 4 hours". And they go, "nah, don't worry about it, they are just being careful, if he was going to get a reaction, believe me he would have gotten it in the hospital". I would then counter with "The hospital gave him 6 hour infusions. I DO NOT WANT A FAST INFUSION. I WANT 4 HOURS".

So what have I done while the nurses are sitting in my living room monitoring Alan and just sitting there doing their paperwork in between the taking of the blood pressure and writing down all vitals.????

I speak to them in french. They are so fascinated by a person who speaks french the way I do, that we pass the time and before you know it, 4 hours have passed. I have had nurses leave a bit in the bag and tell me. "this is normal," He has had enough". I then make sure it's 4 hours and then I say okay. I'm not fighing with any of them.

So, so far, it's always been 4 hours, except for Tuesday, when it was a big more than 3 hours. It was a faster drip and Alan was saying "oh, good, it's going faster now, and I would say "Alan, you don't want fast, you want slow, and the nurse said "no, it's fine". Believe me, Alan will never open up his mouth again.

So what have I learned from this. I learned that if the label says 4 hours, I should never allow less than 4 hours and if the nurse starts going into her spiel about "3 hours is just fine, he has tolerated it before, blah blah", I will say "Sorry, we have had problems with 3 hour infusions, he CANNOT TOLERATE IT. THE BAG SAYS 4 HOURS. It really won't matter because before the next nurse comes, (she's been here and she did 4 hours and we spoke french all day and she wore gloves for everything)

Before his next infusion on July 19, I'll be on the phone with the visiting nurse service and I'll have it put on the record that we won't take less than 4 hours.


I'M IN PROTECTIVE WIFEY MODE HERE!!!!!

lol.

Wish us luck in Court.

Melody

Please have your doctor tell the infusion service miniumum 4 hours as per his orders.... it is not true - as others have mentioned also - that you only may have a reaction the first time... again, these nurses are trying to speed thru their days.... some are great - some are in a hurry..... I had a reaction hours after receiving an infusion that was increased from 4 1/2 to 3 hours - woke up gasping for breath - immediately called my doc who had a fit and said NEVER LET THEM DO THAT AGAIN.

Kmeb:

I completely agree with you. Alan has his next neuro appointment on June 21st. Now if she doesn't return my call (I placed the call last night), well, do I keep calling her and tell her what happened.

How about I write everything down, and fax it to her office to her attention. That way I will know that she got it and that Zoya doesn't need to tell her. I have no idea if her assistant Zoya even gave her my message.

I think I should write up everything and fax it to Dr. Goldfarb. What do you think??

Also, what would you do it the next time, the nurse insists that 3 hours are just fine!!!!!??? Let's say the nurse starts the infusion and (I'm no drip expert by the way), but I can now tell if it's a slow drip or a little faster drip), and I say to the nurse "the label says 4 hours", and the nurse goes into her spiel about "No, he'll be fine". And all the while he's hooked up to the IV.

Now what exactly would ANY of you do in that circumstance. You can't stop the infusion. Do you put a call through to the neurologist (who you can't reach by the way). Do you call the pharmacy department of the IVIG company??? Do you call the visiting nurse company????

I mean, should this ever happen again, I want to KNOW EXACTLY WHAT TO DO ON THE SPOT.!

THANKS,

Melody

As others mentioned - the nurse who first of all did this - should be reprimanded and/or fired (I used to manage a home health office and work in HR in a hospital - they would have been in big touble)...... as far as going forward, first, the prescription the doctor writes for Alan should be on the every bag of IVIG you get - mine specially states 25MG for 15 min, 50 for 15 min, 75 for 15 min, then 100 as tolerated maxiumum rate - infusion minimum four 1/2 hours... again, I've had nurses tell me otherwise because they wanted to get moving on their schedules - not accetable... do not let them... if its not printed on the bag - call the infusion agency and ask why not.... further - again, write up what happened for the doctor, I would fax (but often faxes just get put into files until your next visit) and follow up with a phone call to Zoya to make sure the doctor gets it.... if I were you - and the doc - I would immediatey change infusion agencies since they are trying to get you to keep what happened at secret - NOT ACCEPTABLE.... this is a person's life we are talking about...........!!!!!! Sic em.....

Kmeb:

The infusion agency IS NOT THE ONE WHO TOLD ME NOT TO TELL. It was the Visiting Nurse Service.

I never notified the Infusion Agency. I have always dealt with the Visiting Nurse Service.

I just wrote up everything quite professionally and just stated the facts.

I just faxed them. And followed up and I got Zoya's voice mail so I explained that she should please check incoming faxes and I explained what I wrote.

OH, NEW DEVELOPMENT.!!!! As I am typing this, Zoya just called me and said "Dr. G is not in, she will call you back tomorrow"

I said "I called you yesterday. She said "I check all my messages, you could have pressed the wrong button, I said "I know how to leave a message, your voice was on the other end saying your name (I AM SO SICK OF PEOPLE TELLING ME THEY NEVER GET MESSAGES)).
I was very (okay, I was sharp with her). I said "It's not important if you got yesterday's message, something happened with my husband's IVIG infusion and she needs to know, please see that she gets my fax and she can call me at her convenience.

She said "I will put it on her desk".

Now I would never talk to a doctor that way, but jeez, give me a break. They say Notify the Neurologist when things happen. Well, I did and she didn't even get that message. I KNEW THIS WOULD HAPPEN. That's why I send faxes and do follow up phone calls.

So we shall see.

Now I have to go to Court. Good Lord, I need this like I need a hole in my head. I just want to crawl up under the covers.

I have a friend with Stage 3 Lung cancer, I have another friend of the family who is developmentally disabled and he's 55 and he's 6'7 and they just put him in a hospital and he's scared out of his mind so he calls ME 5 times a day and I'm supposed to calm him down.
Good Lord, if he has a tantrum, I feel sorry for the nursing staff.

Tomorrow I will just light a candle and take a breather!!!
Thank God, tonight is So You Think You Can Dance......

Melody

Melody - the infusion service should be the ones managing the nurses - and if they are contracting out to a nursing service they need to know asap what these nurses are doing.... my infusion agency consists of infusion nurses (thats all they do) their own pharmacy, ins department, etc...... and if I have problems in any area I noitify either the pharmacist or the nursing manager immediately.... if the nursing end is contracted -they are not doing their jobs correctly and the infusion agency needs to know!

I was put in hospital Monday with a 104 temp,i kept having trouble with
having trouble with nurse,not knowing what the h-ll she was doing,same
think teaching hosiptal full. So other Hospital ,came home yesterday temp.
shot back to 104,they have a nurse staying with me untill can get with
my drs. and nurses. So second time this time and last year MASA. My oldest
is on his way.Listen to everyone. Sue I don't care this is a weird world