Alan got approved for the Home Infusions!!!
 

Hi All.

Just wanted to update and give you info just in case any of you have to do this!!

We had not heard anything from the Home Infusion People, so we called up Blue Cross Blue Shield.

I spoke to a lovely man named Brian and asked him if he heard anything. He goes hm hm, let me look. AHA, he goes. "Everything was approved!!"

So of course, me being ME!! and wanting no surprises, I said "Okay, walk me through this information because I know how expensive the Home Infusion thing is with the visiting nurse, etc. etc. and he goes, "Okay, let's see what we have here, okay, we have the Visiting Nurse, we have supplies, we have the equipment, we have the IVIG, we have it approved throughout October 15th, for up to 12 infusions!!! Then he said the three words people love to hear "ABSOLUTELY NO CO-PAY". I said "you are very kind" and he thanked me, said not to worry, that Alan is completely covered. I said "there will be no surprises right?" he said "Absolutely not, it's all right in front of me, and the infusion company will be contacting you, Alan got approved starting on April 4th, (which is tomorrow), so I gather what is happening is that all this is done either by fax, e-mail or snail mail so that's why we haven't heard anything yet. It's approved starting tomorrow.

I even got the name of the Infusion Company, It's called Bioscript Infusion Services (in New Jersey). He gave me their phone number but it was after office hours. So tomorrow Alan will call them and see what's up.

So that's it as far as Infusion NEWS!!!!

Now let's talke about A & D Ointment!!!! This stuff is absolutely amazing.

I put it on Alan's ear two days ago and he hasn't had one single scale, one single red thing, NOTHING!!! completely clear!!!! I would have never believed this.

But his legs, (with the psoriasis), well, let me tell you, outbreaks all over the place. So today I mixed a little clobetizole with the A & D.

His legs have never been this bad and this happened after the IVIG, so I guess maybe all the new little anti-body people are having a war with his own anti-body people, huh???

Wonder which side will win????

lol
Melody

Once the paperwork's done...
 

things for IVIG DO move quickly! The 'usual' way things go is that you get a package [of IVIG & supplies] messengered to your door the day before infusions. Keep in mind that 'Someone' will have to be home to sign for that delivery. Break open the box and refrigerate the IVIG, keep the rest of the supplies in the box. If you are sent a portable pump, just plug it in the nite before you'll be using it to charge. Otherwise you may need to sit near an outlet or use a heavy duty extension cord.... IVIG should NEVER EVER be administered by a gravity drip! [A bag on a hook w/o a pump] That's outlined on every IVIG 'prescribing' information sheet I've ever seen.
Also, be sure to read the LABEL! Make sure that Alan's name and the 'product and dose' are clearly listed on that label...Mistakes can and are made, tho not often.
One aspect you have to work around is that co-ordinating YOUR schedule and the nurse's schedule can become tricky at times. Once a 'routine' is set up, things should shake out. I for one, schedule EVERYTHING ELSE around my infusion dates! A doc wants to see me that day? NO CAN DO! No ands, ifs, or buts.
A&D ointment? Great stuff, but soo gloopy and sticky! It does work tho. - j

Mel,
That's great news!

Mel...
 

you might want to read this:

http://www.pdrhealth.com/drug_info/n...vit_0265.shtml
One analog on RX is Dovonex ointment.

Yea Melody!
 

Good News! What everyone said - plus - on the pump - I was able to get one, which is becoming standard with the agency I used - that is pre-programmed with rates -its small, runs on batteries, and is just worn in pack over your sholder... that way no poles, etc....you dont even notice you have it on (escept of course the IV in your arm) and can move around with no problems (I'm notorious for tripping over IV poles - this is prior to PN!) If they do calll to ask you - ask if you get that type!

Also, having constant IV's makes veins more difficult to wrangle..... if they are, try a heated pad on Alans arm first to make the veins "pop" - one of my nurses taught me this trick and I used it from that point out - really helped....

Good luck!:)

Hi Mrs. D. About the Dovonex, Alan had that when he first got the psoriasis. Did NOTHING for him.

The A&D is doing more good than any other psoriasis meds he has ever taken. I have no idea why. I guess because it's a thick ointment. For his leg lesions, I mix it with the clobetizole and WOW, it seems to be doing it's job.

OKAY, HERE'S WHAT THE INFUSION COMPANY JUST SAID!!!!

Spoke to PJ, he said "I have to check with his doctor to see if she wants the two day a month, or how many days a month he'll have it". I said "what do you mean two days a month, it's not one day at a time"? and he goes: "no, we have 2000 IVIG patients and many of them have two days a month and some even have 5 straight days of infusion. We have to call up his doctor to see what she wants him to get". I said "okay, fine". Then he asked me exactly what Alan was on in the hospital (Thank goodness for these boards), I told him "hold on I have to go to the neuropathy boards, look up my old thread and I'll tell you". I did and I gave him the information. He said the following to me "Alan is prescribed pre meds, tylenol and Benedryl (2 x a month), (that's when I found out he might be having two straight days of this).

Then he said "Alan will be getting 30 grams over 4 hours. I repeated this just to make sure and he goes "yeah, we go slow". I said that's fine".

And they come on Saturday and Sunday. And they'll work around any schedule we have (like we have a wedding on June 8th).

Since we don't know if this will knock him out or anything, this is just a wait and see approach to this infusion thing.

I can't imagine what his psoriasis will be doing over the course of this treatment. Small price to pay if this stuff actually does what we hope it will do. I don't look a gift horse in the mouth believe me.

He explained about the meds being delivered by Fed Ex and how I refrigerate everything and take them out two hours before the nurse gets here.

Now here's a good example of how many different bits of information I got from the boards here and from the guy from the infusion company. I just printed out the post that said:

"IVIG should NEVER EVER BE ADMINISTERED BY A GRAVITY DRIP (A bag on a hook without a pump). That's outlined on every IVIG prescribing information sheet I've ever seen." That's a direct quote from the posting.

So now I've got PJ on the phone, (he's very nice by the way), and I thought I would gently ask him "This comes with a pump, right?" and he goes "not always". I politely told him that I go on the neuropathy boards and many people have been through IVIG and I read to him about the NEVER USING A IV DRIP thing. and he goes: "These people might not know this but we don't always use a pump, we have 2000 patients and 1500 of them don't use a pump". I couldn't see myself saying "but the people on the boards said one thing and you said another". I don't want to get off on the wrong foot here, but now we have two completely different scenarios going on here.

And because we don't know what is going to arrive by fed ex, I have no idea if there will be a pump or no pump.

Now Alan asked me a question and I'll run it by you. Alan has a slight hearing problem s he (under the advice of his doctor), listens to tv with his headphones. If he didn't do this, I would go out of my mind with the loudness in the apartment. That's how loud he would have to jack up the tv. He has a 20% hearing loss. So he's fine with the headphones and has been listening to tv for years like this. He doesn't need a hearing aid for everyday life and he hears people talking just fine. It's the tv that's across the room, that he needs the headphones for. He asked me "what if she wants to watch tv, it's impolite for me to put the headphones on and I won't be able to hear it if I put it low" This is what I told him and correct me if I'm wrong, okay???

I said "Alan, this is a visiting nurse, she's from the service who sends out visiting nurses. She is not there to watch tv with you, she's there to monitor the infusion. Your job is not to entertain her. Of course, I'll offer her coffee and muffins, but if she wants to sit and read or do needlepoint, whatever she'll do it. If she wants to watch soap operas or whatever, then you put the tv at a normal level for the 4 hours and you just sit there and read."

Am I correct in this. I mean, if he puts the tv on (without the headphones), it would blast anybody within hearing distance into kingdom come.

So I believe he could just sit there with his headphones, watch his tv, and she'll do whatever visiting nurses do when they visit people during their infusions, am I correct? thanks for helping me with this. We don't want to step on anyone's toes here. This is a first for us.

Melody

Nurses
 

Melody,
The nurses are paid very well - to do one thing - take care of the patient! I've had nurses sit and read - or do paperwork - etc... as long as they are watching Me - Doing vitals every 15 minutes for first hours - then at least every hour - thats my concern.... Sometimes we would watch TV together, but this is their job - to watch Alan - not to sit around and be entertained... so dont worry - there is lots of paperwork involved usually - so that takes time... they need to re-order supplies, etc.. so should inventory your supplies, etc.... Also, they should NOT leave Alan alone - they are there to make sure he is ok....

I used to get 20 mg in 4 1/2 hours - with step up rate of 25 - 50 -75 - 100 during the first hour - then held at 100... some people can tolerate much faster rates - again - if side affects start - they should slow down the infusion (the docs will tell you that)..... Also, my infusions were weekly for months, then evey other week - again, depends on the doc and how he sees Alan progressing.....

:)

Don't worry about the nurse(s).
 

They will do their thing and Alan can do his. The nurses do this all the time and I doubt any of them expect to be entertained. This is their clinical practice area, rather than a hospital ward or unit. Don't worry about it til they get there. It's not a big deal. Just play it by ear. I'm sure none of them will mind if he watches TV with his headphones. Of course if they're interested in watching too, that might be a different situation. :D

What is this therapy for and the goal of the therapy?

Barbara

Hi Barbara and Kmeb.

Barbara, Alan has been diagnosed with (finally, after 18 years), with Chronic Inflamattory Demylinating Polyneuropathy. He's had the first 5 rounds of the ivig.

Oddly, right after I posted my question to you guys about the nurse and the headphone thing, we got a phone call from the company's nurse and she took all of Alan's background information, what meds he's on, etc. She was very nice and she explained EVERYTHING TO ME.

Alan's first infusion is on the 9th and 10th of April. The meds and supplies arrive via Fed Express on Saturday. I then asked her the question about the visiting nurse and she laughed and said "Melody, if you were expecting the cleaning lady to come, would you let her watch television"?. I started laughing. She explained how the nurse will monitor his blood pressure, his vitals, everything. I told her I'd make coffee and muffins and she laughed her head off and said "everybody should be like you". She was very nice and very informative. So I learned lots of stuff today.

She also explained that most infusions are not done with pumps. That was a new one to me.

So we're all set.

I can't thank you guys enough. You got me through all of this.

Melody

Well, it sounds like you're all set then!

Thanks for the information regarding Alan's Dx. That makes things much clearer. I sincerely hope this treatment works well for him. And I'll know you're keep us all updated?

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.

PS hydrate good the day prior and during the infusion, water, not caffiene. Good to flush, better to start i.v.

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

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... :eek:

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!!!!!

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.

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