I just learned something new. The nurse is now doing the pump thing. I explained that he must have 4 hours. (I had to because every nurse wants to do it less and they go into the explanation, etc ) but I just politely explained that the last infusion was a little over 3 and he became ill the next day and please to make it 4. No problem there. I even gave her one of my muffins. She is very very nice and we've been speaking french for 30 minutes.

Now this is what I learned today. I naturally assumed that the bag of Gamma would hang on the iv pole during the infusion. So when I see Alan, with all the iv stuff in his arm and the bag of gamma is on the table, I just said "have you started yet?" and she replied, "Oh, this has nothing to do with gravity, it goes through the pump". I did not understand this whole thing. How on earth can medicine go through a pump if the bag is not hanging on the iv pole? She must have seen my confusion and she laughed and showed me how the pump is monitoring the infusion, and the arrows are going in a certain direction and if it becomes occluded or it was not infusing at the rate programmed, the pump would be beeping.

I had absolutely no knowledge that this is how it is done. I tell you, this is absolutely amazing. I thought everything is done via gravity and I still don't understand how the pump draws out the liquid from the bag but since I'm not a medical person, I don't have to understand anything, right?

The pump is not beeping, that means it's working, so we'll eat our muffins.

She also explained the pouch thing and she explains that people can have the gamma bag lower than the pouch and it still infuses. Never knew such a thing was possible.

I should have done what my mother did at 56 years old. She went to nursing school. I wouldn't feel like such a boob!!!

lol

Melody

Melody,
I'm so glad this infusion seems to be going well. It also sounds as if this nurse knows what is to be done. While I understand the way the pump works, I'm not sure how to best explain it. Maybe Dalek or one of the guys can find the words.

Billye

That's okay. I really don't need the particulars. Just as long as he tolerates it well, that's just fine by me.

This morning Alan had a very deep voice. I said "what on earth is wrong with your voice". He's been rubbing his eyes lately. A lot. His eyes have been getting red. One evening, I think I made onions and his eyes got all red and he was rubbing, And he used visine and in 5 minutes they were fine.

So this morning, all he did was rub his eyes and his voice was deep. No coughing, no sore throat, no fever, no nothing.

So during the infusion, I thought he felt warm. The nurse said "do you have a thermometer?" So I got it and we took his temp and it was normal.

So we both think it's allergies.

So I asked her what would be the case if he woke up (on the day of an infusion) and he was sick, then what should I do?? She said "call The Infusion Company and they will contact his doctor. I said "oh, yeah, like you'll get anyone there". She said "well, then the pharmacist at his infusion company would determine what to do.

I mean, I have to know these things just in case it ever comes up. And I said "you mean, then the $8000 worth of meds in the fridge would go to waste?" and she said: "well, if he has a fever it means his body is fighting infection and if we were to give him antibodies, his body wouldn't work that well" (or something to that effect).

I mean, have any of you gotten your meds, then you couldn't proceed with an infusion? What did you do if that happened??

Thanks, Mel

Basically the pump by movement of either a piston or rotor draws the fluid out of the bag and creates a suction and then discharges into the iv under whatever the rate is set for on that pump.

Hi Melody - Glad to hear pump working well..

I've had to postphone my infusion for a day or so on the past - I get it delievered like you - and it has a life of 5 days.... they usually deliver the day before and I have woken up with a fever - called the agency - and they posphoned it for a day or so cause the meds were still good - I know the IVIG builds up your immune system - but remember, also can cause side affects, and they dont like to take a chance they are going to get worse because of an infusion... so the meds were used - just not on that day...

My agency works 24/7 - assuming yours would too (so they just sent another nurse out) - also, isnt your nurse alreay taking Alans vitals throughtout the infusion? (including temperature) I usually run a low fever for the first hour while my body gets used to it - then goes down...

She takes his blood pressure every 15 minutes.

I have never seen a nurse take his temperature, EVER!! Should they be doing this? I only mentioned it because he seemed warm, but she touched his arm and said "no, but do you have a thermometer". His temp was normal.

I never knew they are supposed to take his temperature during the infusion and I really didn't know you can get a fever during an infusion. I always thought it was a side effect AFTER.

Wow the stuff I learn here!!!

thanks so much

Mel

on the right an proper track.
I will not lecture on the how's and why's of the infusion, but compared to past 'events' this appears to be proper protocol.
Temp may not need to be an issue, but that she's taking the BP often is really good, given Alan's heart condition. Also, be sure to make it crystal clear to Alan, that IF he feels out of sorts during the infusion and after IN ANY WAY...to Speak up, as clearly and assertively as he can. Should Alan say he feels suddenly 'hot' or 'cold', be sure his temp is then taken...Maybe to make YOU feel better take his temp about an hour before the nurse comes..that way you have a basis of comparison.. But it's not necessary, once you get in the 'groove' and no problems crop up, it's Infusion Boredom! Boredom is a good thing at times, this is one of them.
I hope his feet hurt lots less now! - j

Joe - that was the sweetest simplist explanation I have ever read!

Melody, if there are reactions, and you can't get the doc...these pharmacy docs are usually the best! They know more about IVIG than the docs do.
I say usually based on last month's experience tho....

Dahlek:

I was never so bored in all my life. And that's good, right?? Because bordom means no complications. So I fell asleep on the couch, and woke up snoring. I was so embarrassed. And there was that lovely nurse, writing in the IVIG folder, and checking his vitals. I asked her "how do you do this every day?" and she said "And I have to go to Manhattan after this is finished". It was now 6:30 p.m.

God bless these nurses, they really do their job.

I do believe Alan has allergies. His voice was deeper yesterday but he had no fever. No cough, no nothing. Just rubbing his eyes and talking like a baritone.

I have never heard his voice like this.

This morning he said "my throat is a little sore", and I go "uh oh" maybe there will be no infusion today. He has no fever. He said "it's just that I just woke up and my throat is dry". I said "well we have to make sure before the nurse comes. I'll take your temp after you finish eating breakfast and rest a bit.

So it's now 9:a.m. and his forehead feels cool. His throat is better. The thermometer is in his mouth, so we shall see.

Last night I phoned my friend who is the most allergic person on this planet. She said a 25 of Benedryl would do nothing for her. I told her about Alan and she said "Oh my god, you opened your windows today?" and I said 'of course I opened my windows, what on earth are you talking about?" and she said "don't you know that today is a bad allergy day, I already have hives all over my face". I said "you have what all over your face, why"??? and she goes "the pollen, the pollen". I said "what about The Pollen, the Pollen?" and she laughed and said "you never open the windows on a bad pollen day". and I said 'oh really, well I have screens and how am I supposed to get the house cooled off" and she laughed and said "Pollen goes through screens".

Now Alan has never been allergic to pollen (so I thought) in his whole life. He went to an allergist several years ago (on his journey to find out why he had Neuropathy) and the doctor said "your're fine", just don't use strong detergent in your wash, you have sensitive skin".

Now I'm the one who was severely allergic as a child. When I was 6, I remember going with my dad to see Dr. Goldberg and I was diagnosed with Rose Fever (I have no idea what Rose Fever is), some sort of hay fever, I would imagine. But I remember vividly going for a shot once a week. I also remember lying on a table and they put these hot tubes up my nose and flushed some kind of liquid in me. I will never forget those experiences.

Can't remember how long this went on. But I grew out of it.

Can a person grow out of allergies?? And when I asked my friend can allergies affect a person's throat? she all but yelled at me "are you kidding, the throat can close up, thank god he took a benedryl".

Guess I have much more to learn hah???

Oh, his temp is normal.

Just made some more muffins (they cleaned me out yesterday). This one is blueberry honey. Jeez they smell good.

But I'm good, I only allow myself one a day.

Oh, five minutes before the nurse came yesterday, I had all my windows open. I have two ceramic chinese vases with flower arrangements on each windowsill. The middle window was closed (thank god). I also have a free standing tall vase with long live bamboo plants and artificial flowers mixed in. It really makes a beautiful corner flower arrangement. Well, it did until yesterday. Some kind of windy front blew in and in two seconds flat, my tall corner flower arrangments were on the floor, the glass was shattered and all my water was all over the living room. And this was 5 minutes before the nurse arrived. So Alan said "what did I tell you about putting flowers near the windows? No sooner had I cleaned that mess up, when we hear BOOM, and the other vase on the windowsill was blown off and to the floor. All my beautiful chinese vase (all $3.99 worth of it, I got it at the dollar store), well, it was on the floor in shards. Since the flowers are fake, thank god there was no water. Then the nurse walks in and says "mon dieu". and I laughed and said "not too worry, this is the second one in five minutes". The wind was blowing and howling like a big storm was brewing. Alan said "If you ever put a vase in the window again, well...... I laughed and said "that's it for me, no more ceramic vases with flowes. So I had to CLEAN THAT ONE UP TOO. I had to make sure there was no shards or glass fragments on the floor.

Thank god for swiffer wet. Saves my life.

So we are good to go for today's transfusion.

Tomorrow Alan is supposed to get his oft Loading shoe.

speak to you guys soon.

Hope you are having more pain free days.

Love, Melody

Oh, I just read this on my MSN home page. Thought you might find it interesting!

http://www.msnbc.msn.com/id/19308857...5773?GT1=10056

Just sending healthy thoughts to one muffin lover from another. There my favorite and any kind but chocolate. My mom bought me some from costco the blueberry and coffee cake strussel are my fav. Melody you should be a writer. I can see you being a childrens author. You would be good at that and it could make you some extra cash. Now if you could just find the time between all the things you have to do. OY! Hope your husband and you are on the upswing.

going around. I had mine on Mother's Day weekend.

And several people at work had it this week. It was mild, and went away in a day or two.