Right now it' 9:35 a.m. on Thursday. I just came back from breakfast around the corner. I meet a neighbor who is a nurse. She lives around the corner from me. I am speaking to her about my husband and knowing she's a nurse I say to her "Alan is in the hospital undergoing IVIG!! And the look on her face immediately changed and she said "oh my god" I said "oh my god, what????". I became concerned.

She said "that's serious stuff, why is he getting IVIG?" I explained about the neuropathy and she immediately said "many of my patients have neuropathy". I was dumbfounded. I had never told her about Alan because she's a neighbor living around the corner so we just chat about kids, the weather, I never really brought up Alan's PN. So now I have her in my sights and I am sending out question after question.

I said "what do you mean this is serious stuff?" and she goes "well, many people can't take it" and I said "what, you mean the side effects". And she said "well, yes, sometimes they are severe, it depends on how the stuff interacts with his body, some people have more side effects than others". I said "what exactly are you talking about?" and she said "oh some people get rashes, some people have trouble with IVIG".

So I asked her the big question. "DO MORE PEOPLE NOT TOLERATE THAN DO TOLERATE IT????"
And she says "Oh, more people can't take it". And some side effects come in after the person goes home!!!

I said "Really????" Then she took her kid to school so I'm left standing there thinking Alan is going to have something horrible happen to him after he comes home.

Now last night Alan called me and said "melody they changed the time of my infusion from 4:30 a.m. and now they will be giving it to me at 1 a.m.. So I went to bed thinking he's getting the infusion last night at 1 a.m.

After speaking to my neighbor (the nurse), I immediately come in the house and it's 9 a.m. and I think Alan had the infusion at 1 a.m. last night, so I call him up and say "how did it go?" and he replies "I didn't get it yet, they changed it to 10 a.m..So I'll be getting it in a little while." I asked him "well, why didn't you question this and he said "oh I did, and the nurse said the resident over-rided Dr. Goldfarb and put me in for 10 .am. infusion.

So I'll be getting there at 1 p.m. this afternoon. He should still be in the middle of the infusion (and don't worry, I'm looking at the bag and writing down everything I see and will post this later).

Now, since I have no idea how this IVIG is supposed to given, (except I know it's once a day or thereabouts (that's what Dr. Goldfarb said), do any of you know why they would give him the first one at 4.30 in the a.m. and then tell him he's getting it at 1 a.m. from now on, and then they tell him "no, we're giving it to you at 10 a.m.. I am clueless.

And don't believe for a second, that I will be going there this afternoon, like a crazy woman demanding to know what is going on. I know exactly how to ask a question, with respect and diligence. I will be doing just that after I get there.

I just hope someone gives me answers. I am finding that many nurses don't like to be questioned (even if it is with respect). They just want you to lay there and take whatever is given.

THEY HAVE NOT MET ME!!!!!!!

MEL