As all of you may or may not know, he's had 9 infusions, and all of them have been with the IV drip from the pole.

And you've all read about his last debacle with the leaky bag. So I read all the posts, and since everybody told me that Alan should definitely be on a pump, (and the first time I asked the IVIG company, I was told that there is no need for a pump, HAH!!),well, because I didn't know any better, I didn't question.

So yesterday, (after not hearing back from ANYONE about my request for a pump), I simply put a call into the IVIG company and left a voice mail with the contact person I usually deal with. He never got back to me. I was polite, in the voice mail and simply requested that they do the pump instead of the IV drip.

Since he didn't get back to me, I called again and spoke to someone else and I requested a pump. She said this to me: 'we have to ask why you want a pump". I said "Well, does the fact that there was a leaky bag at the last infusion and that he came down with a fever of 101.5 and was sick and I had to alcohol rub him the entire day and he was sick as a dog, well, (and I'm talking quite politely), well, is that reason enough?" and she said "oh, absolutely, I'm ordering a pump for Alan".

I confirmed everything and on the 18th, they will deliver a pump (along with the gamma) via courier and the next two days he will have the infusions.

I also confirmed that the prescription said 4 hours and that most nurses like to tell us it can be done in 3. And she replied "no, if it says 4, than it should be 4". I responded 'yeah, you would think that would be so, wouldn't you??"

So we shall see if everything goes as she promised.

Hopefully he'll get a pump, it will be 4 hours and everything will go smoothly.

Honestly, I see no improvement but Alan says "I think my balance is better".

So he knows his body better than I do, right?

Hope eveybody is having more pain free days!!!

Melody

Melody,
Good for you! I'm so glad that Alan has you to fight his battles. Bless his heart. We have to really be our own advocates in this day of "modern medicine".

Billye

Yeah, well done Mel, why do all these health insurance companies have to be so damn lousy, geez, they take your money quick enough but its a different story when it comes time for them to pay back a little, Alan's lucky to have you on his side.

I am glad you got the pump.

The only thing I noticed about getting IVIG, was my balance and vision got better...and that does mean something....

That is wonderful that your husband got a pump! I have been receiving IVIG therapy for the past 8 months now and it is very frustrating working from a drip.

I know exactly what you are saying about some nurses wanting to speed things up. I finally have a lovely nurse that helps me know, but the first one was awful! She was insisting on giving me 35gms in 1 1/2 to 2 hours. By the time she was done my head was spinning. When my doctor increased my dose to 80 gms she wanted to give it to me in 3-4 hour. I never let her touch me again and got rid of her immediately!

Hi All:

Let's just hope that on the schedule date, the pump arrives along with the Gamma and those cold keepers. People say lots of stuff on the phone, promises, etc, then when the doorbell rings, well, you never know.

So I keep fingers and toes crossed.

We just came back from the podiatrist and I'm posting that on another thread. Very interesting results today on whether they will operate on Alan's foot or not!!!!

Mel

About time! And for safety.....
Valese and Mel - if you KNOW and you should know what brand you are using, all but one brand of IVIG state that it MUST be used with a pump! No ands, ifs, or buts!

If your brand states pump - GET PUMP! IF you are not being infused with a pump, call your doctor and your state licensing medical board simultaneously about the service not administering this blood product properly. Yes, it takes longer for the services; yes, nothing 'ususally' happens w/o a pump, but, do YOU want to take the risk of being in that 10th of a percent? If you want I can probably find the State board's website and post it...seems I can 'find' this sort of stuff easily... To me, it's kind of like a doc doing surgery without gloves or washing their hands - too old fashioned for these real times.

OK you have pump - now what? My own is a small 'portable' one, that I start charging the nite before my infusions. It comes with a sort of tote bag that holds the IVIG pak and the pump. I charge it each nite before use, use it then put it back in the bag till the next time. It's easier than a pole pump, but as long as the pole pump has battery back-up you should be OK for bath-room trips [as needed]. My pump did not come with instructions, my first pump 'day' I had to be plugged in for the 3+ hours needed.

As for how long an infusion can take...well doctor orders are just that! That's why a copy of the doc's infusion instructions should come with each package, they do with mine. As an aside, while I have had problems with infusions in the past, my nurse AND I have worked it out for a schedule of infusion that is quicker and yet tolerable for me. Should I have residual issues after any particular infusion, I make a note and let the nurse know ahead of time -when scheduling the next infusion...it gives her time to plan or re-plan the other patients she also has to do on those days. I also schedule my next month's infusions as the nurse is leaving from my house...this way we are all on the same pages about what is going on and what may have to be changed. Just things you should know and work out as needed, I guess.

To be even more blunt, scheduling my infusions is my first priority. Doctor appointments, weddings, funerals and anything else is definitely a 'second' in my life. For some IVIG is not a regular nor consistent treatment. Looking over all the information on it - what it is for, what it can and can't do, and my medical issues - I figured that if treatment was successful, it would mean a lifetime of treatment. I am far better with it than without it. I really would hate to think of where my life would be without it tho...since I am not there I am not going to worry about the alternatives!

Hugs to all - j

Hello J - Thank you for the information. Baxter is the manufacturer of my IVIG. I did read all the information regarding the administration of the drug and I didn't see any mention of using a pump.

After my first bad experience, I do have a good nurse now that really takes her time with the infusion and regularly checks my vitals.

Yes all, this aspect seems to have 'disappeared' from the prescribing info...below

http://gammagardliquid.com/pdf/gamliquid_PI.pdf

see page 3, 'dosage and administration'...This all is for the liquid tho.

If you've the powder, web up 'gammagard' and see if it's [I think] S/D and do a similar look at the prescribing info for that...As of this time last year, there were clear indications for the powder that a filter and pump HAD to be used. I am getting sluggish in my research? Not really, I'm using Gammunex and Last I looked [2 months ago] Pump and filter were in order. SIGH?

HOpe this helps.... 's to all! - j

There are different types of pumps????

I didn't have a clue about that!!!

I gather, when they deliver everything on the 18th, that someone will tell me if I have to plug it in, charge it up, or whatever.

jeez, this gets better and better. Now I may be charging pumps.

The label on the gamma stuff always says 4 hour infusions.

And he likes this particular nurse, he had her on the 8th infusion (before the one with the leaky bag).

So we shall see.

bye for now
Melody