Now I am completely confused. You guys know me, I'm very thorough about following up on stuff and finding out what comes next in his world of PN, right??

So the last thing we heard last week was from Zoya's office (his neuro's assistant), who does everything for the patient.

I spoke to her personally and she told me that Alan's neuro is working on getting him the home infusion and that we should come in on April 12 (to the neuro's office).

So we have an official follow-up appointment (his first since the first 5 rounds of IVIG).

So it's been over a week since we spoke to his neuro's office, so just now I phoned Blue Cross Blue Shield Medical Management department (all pre-certification has to go through them, ESPECIALLY IVIG, I found this out because they just told me.).

So the girl goes "no, we have not heard from the neurologist, and no one has started the proceedings to get your husband or his in-house home infusion". I said "are you serious?" She then said "did you hear her personally on the phone try to set this up". I said "of course not, but she knows all about IVIG and what she has to do (she knows because we discussed this at length when she told us about Alan being eligible for IVIG, and I asked her (Alan's neurologist, I mean), "you do know you have to set this up, right? I mean, I don't do anything or call anybody, right?" and she said "oh you don't do a thing, everything goes through me and my office". So I said "fine".

Well, fast forward to today, and I am told by medical management that no one has called up that department to get Alan set up for his in-home infusions. And Alan said he feels better after the IVIG than he ever did on Lyrica, Cymbalta, etc. etc. So he asked me this morning, "what's up, what haven't we heard anything about my in home infusions"? That's what prompted me to phone up Blue Cross Blue Shield and find out what is up with them!!!.

So after hearing that no one has done anything, I just called the neuro's office and of course I got Zoya's voice mail so I carefully and slowly explained that I just got off the phone with medical management and they have not heard anything from your offices about setting up Alan's in home infusions for IVIG".

I further made it plain that in-home infusions MUST BE PRE-AUTHORIZED through medical management. I had been under the impression that his neuro knew this. I aske medical management "but he got the pre-authorization for the hospital ivig" and she said "yeah, but home IVIG is different and everything to do with in home infusion of IVIG has to go through this department (medical management).

So I just left my name and number. I was clear in my speaking that Blue Cross Blue Shield has no records of the neuro's office requesting any certification for Alan's IVIG.

I mean, really, I know that IVIG is not your everyday thing and that steps have to be taken. But why haven't these steps been taken???

Do I have to do anything else (honestly, I don't think there is a darn thing I can do except to call the neuro's office, which I just did).

I guess I have to wait for a reply from Zoya, right?

Would you guys have done anything differently???

Thanks, Melody

that it's a truly LONG and squirrelley process. Once you're in the mill, you are IN! Getting there and any screw ups in-between, well...STUFF HAPPENS! Docs are, I believe given 'quota's of the stuff, and they are handed out like 'gold'. I had my now ex-hospital tell me that it was part of 'their' quota, I politely corrected them...they didn't contest-they couldn't. I was about to be denied a pre-approved dosage arranged at least 2 weeks in advance and had had no notice of substitution or dose denial [by the hospital].
This, always keep in mind, is VERY PRECIOUS STUFF!! It's expensive, hard gotten and for many life-saving. If Alan has any good response, you doc will try to see how long that response can last between infusions.
Maybe it's Alan's heart issues that are a snag...I'm not a med, so's I don't know the what alls involved there.
Essentially, it's up to your doc's office to do what all needs to be done now. Wait and see. Honey goes lots further than vinegar in these situations...bring 'em all more muffins? - j

Melody,
Dahlek is right - this stuff is preious - but again - the recipient must be careful.... maybe the doc is holding off until he sees Alan at his appt. - to explain the process at home (remember - when the nurse leaves its just you to watch him) - make sure he understands all the potential side affects, have you sign releases (I had multiple forms to sign saying I understood all that steps involved).... and also to see how Alan is feeling first before he orders the frequency and amount to be given at home.....

As far as the pre-authorization - once my doc gave the "go ahead" after I'd signed everything - I heard from the pharmacy in a couple of days - trust me - these home infusion agenies do this for a living - and work very closely with the docs and insurance companies - they know how to get approvals and very quickly...

I'd hang in there for the appt - its only two weeks - and see how Alan does in the meantime.... GOod to hear that it has helped him!

Wow, you guys helped me a lot. I know this was precious stuff, but I really didn't realize HOW PRECIOUS!!!

I guess she is waiting to take his blood and see what's what!!! But honestly, someone should have told us this. Jus to say: "we're arranging it, everything is up to us, you don't have to do a thing, and then weeks and weeks go by, well, because we have no prior knowledge of this stuff, how are we to know EXACTLY WHAT THE PROCESS IS!!!

No one told us. So of course, we'll keep the April appointment.

Will let all of you know what happens.

So far, he's doing just fine.He goes to the gym a few times a week and tonight he's going to his first bible club meeting. He met a man at his gym who has a bible study group. When Alan first went back to the gym after the 5 rounds of IVIG, the people at the gym greeted him warmly with: "what happened, we missed you", and Alan replied "Oh, I was in the hospital for 5 days" and the guy said "Oh, why didn't you let us know, we would have prayed for you". I thought that was very nice of them.

Alan doesn't have any friends so to speak of. Just my friends. So this is a big step for him, going out and extending himself outwards. He's never done that before, but then again, he never had IVIG before either. All new things.

So he'll go and discuss whatever is discussed at Bible groups.

It's a good thing.

Melody

http://www.nhianet.org/patientresources/index.html#iv
The above is a short and sweet summary of it all.
The site below is what should be done by the nurse:
http://www.primaryimmune.org/pubs/nurse_guide_igiv.pdf

Lastly, once you have your package of IVIG and supplies delivered [usually the day before...and it's done by messenger] refrigerate the IVIG only. Look up the brand [it should be identified on the bag..or bottles] and PM me. I'll get the prescribing info site for you....READ THAT very carefully.

Again, you or Alan would BOTH benefit by reading back issues of IG Living.... It's an informative magazine about the IVIG processes and people who use it.

Hope this helps - j

Melody,

When I first started home infusion - I webbed up some of the sites that Dahlek suggested and printed them out and started a file - ended up making copies for some of my nurses who asked for them - tells you what they (the nurses) are supposed to be doing, all the affects, uses, side affects of IVIG, et..... they learned from me!

Also, IG Living is free - you cant beat that! Its worth the read!