[MelodyL]

I started another thread because I want to put an upward spin on this whole IVIG thing. Alan's guy Gene was supposed to come between 9 a.m. and 10 and I was to take the med out of the fridge at 8:30 a.m.

I get up and Alan is no where to be found. He went somewhere and it's now 8:a.m. and NO ALAN!!! Seems he left the house to go to the post office (knowing it opens at 7:30), BUT NO KNOWING THAT THEY DON'T TAKE ANY CUSTOMERS UNTIL 8 A.M).

So I'm saying to myself "oh my god, I've got $6000 worth of Gamma stuff and the guy will come at 9 or 10 and there's no ALAN.

Thank god, he walks in the door at 8:20 a.m. He takes his pre-meds and I take the gamma out of the fridge at 8:30 a.m.. We are eating breakfast and the doorbell rings.

Alan looks at me and says 'it' can't be". I said "of course it can be, you expect things to go right all the time?????". So this delightful person walks in my house shakes my hand and I promptly say "you're early, right?" and he laughs and says "there was no traffic". So I say "Then you must eat breakfast with us". "I make homemade muffins". He eyes lit up, he sat with us and had coffee and muffins.

Then the best part happened. He had a french accent. Alan groans "Oh no, now I'm going to hear you two speak french all day long". And of course he was right.
I was in my glory. A nice nurse, speaking french. blah blah blah.

So after breakfast, he hooks up Alan and, in the beginning could not get the iv thing to drip at a continuous rate. We had to position Alan with pillows, change where he was sitting, change HOW he was sitting, moving his arm, etc. Finally, it worked just fine.

So right now, Alan is in the living room, hooked up to the IV, answering all of Gene's questions while he fills out the paperwork.

So far, so good.

Melody

P.S. It's now 12 p.m. and the nurse had to change Alan's tubing. It seemed Alan has to be sitting in a certain position for the drip to be continuous. Happened even after he changed the tubing. So I simply popped another pillow in back of Alan (he already had two), and VOILA!!! the thing started dripping again.
The two of them are inside the living room talking conspiracy theories, etc. Alan is having a ball. The guy said "too bad I have to go to my second job (he works at a psychiatric facility). He said "I'd love to continue this conversation" I said "well, you're coming back tomorrow, and he said "oh yeah', we can really talk.

They're jabbering away as the guy takes his pressure, checks his vitals, etc. He writes down everything he checks. He's a good guy.
Thank goodness.

[SeamsLikeStitches]

Oh Mel, that's so great! I'm so happy you have someone that you "both" get along with. Of course, who wouldn't be happy around you two? It's just nice to know that if you have to have someone in your home all day long, at least they are a pleasant person and someone you enjoy having a conversation with!

[dahlek]

That things went well! AND that you stuck to your guns! Nothing is worse than getting in an infusion situation w/person[s] you can't stand.

What were Alan's pre-meds by the way? How much of which what's? IF he's doing the Benedryl thing, he's probably in a state half-like a caffeine buzz [the ivig] and half doze state [the Benedryl] Is a quirky place to be, but wears off after a day or two. Headaches tho? If he's got a migraine-like one [vise grips around the head, head going to explode things] call the doc's office and I'm betting YOU kept track of the rates as they were upped and done.

One suggestion for the future tho, IF you are going to keep doing the 2-day infusion route, try to schedule your infusions for a Wed/Thu or Thu/Fri. w/delivery of the IVIG on Mon or Tue. That way you have wiggle room in case of delivery problems and weather events such as blizzards or whatever. It's worked really well for me that way. I book all Doc appointments AROUND my infusion dates, no AND's IF's or BUT's! With NO EXCEPTIONS!

I guess I'm now in 'good' with my IV nurse! I was supposed to have infusion last Wed/Thu and they didn't deliver. So my nurse changed her schedule so's she could do me on Thu/Fri...putting off her vacation on Fri. I feel not only totally lucky, but honored! Sure wish I knew what I'm doing right!

Melody I hope you have the same good treatment I am having! - j

Maybe? You could tease Alan about his 'kinky tubing?' [sorry, just couldn't help it!]

[MelodyL]

Hi. Alan's premeds are one benadyl and two tylenol 30 minutes before the guy gets here.

After taking th benadryl, Alan slept for 2 hours. The guy and I spoke french for 2 hours.

Alan woke up, and we all had a nice chat. The guy did his thing with the monitoring, blood pressure, pulse, paperwork. Very nice guy.

Alan wants to get a part time job on the weekends, so he and this guy will get their dates straight. The guy said "you also have to understand that it's also about the availability of the Gammaglobulin". It seems that at various times, this nurse had an appointment to give someone an infusion but they never received their meds. Stupid me, I thought, you are supposed to get meds, YOU GET MEDS. That appears to not always be the case.

But I'm learning.

But right now Alan wants to kill somebody. It seem that he LOST HIS ACCESS-A-RIDE PRIVILIGES. He was supposed to go for an interview (they do this every year or so and re-interview you and you fill out paper work,and you go down to the Access-a-ride office and they watch how you walk how you move), etc. and they decide if they will renew you. Alan, because of his neuropathy, has always gotten renewed.

Well, the appointment for the interview was on April 6th, which was Good Friday. So Alan called them when he got the paper saying April 6th and said he could not make it that day, can they please reschedule??. They said "no problem, we'll send you another appointment". So what does Alan think?? He thinks he can still use the access-a-ride until he gets his interview. That's WHAT USUALLY HAPPENS. In his case however, once a person cancels or re-schedules an Access-a-Ride re-evaluation, they AUTOMATICALLY TAKE YOU OUT OF THEIR SYSTEM, and you can't book any more trips or use the Access-a-ride. We were incredulous. I called and got it straight from the supervisor. She said "he is no longer in the system, and even if we re-schedule him for a new appointment, he has to get their on his own, we don't pick him up". I wanted to kill her. Alan must have called up supervisor after supervisor. Always the same story. He is no longer in the system, he has to get another appointment for an interview. They won't re-instate him. And all this because he could not keep the Good Friday Appointment.

This stinks. I'm writing the Mayor.

Melody

[Yorkiemom]

Glad to see you got a good nurse and the home IV's all worked out. I hope it helps Alan with his PN.

Did you find out anything about the trigger point injections?

I had two years of French in high school, about a hundred years ago. Here is what I remember: Parlez vous francais? Mais ouis??? (not sure on that one) Je vous aime beaucoup ma cherie... Qu’est-ce que c’est? Pardonez moi... He probably would get tired of hearing that for 2 hours...

Cathie

[shiney sue]

I live in Columbia Mo. 3 big hospitals,the Unversity of Mo,oh i'm talking about the assit a ride,anyway samething happened to 78 yr. old childhood friend,my mother left me ,very nice very indepent i called a Social Worker at the hopital,she got it done..Good luck!!! Sue To tired to list but have pn,

[jarrett622]

You got a good one. Will he being doing all of it? Or will there be other nurses at other times?

[MelodyL]

H Jarett:

Alan and the nurse were talking about this yesterday and Alan asked him: "Will you be the one coming every month or do I get different people"? and the nurse (John) said: "No, it will be me".

So of course we are happy. I sent the nurse home with a plate of my muffins for his family.

We are indeed very fortunate.

love, mel

[MelodyL]

I was just on the CIDP boards (yeah, I joined another message board, lol), and found the most interesting posting. Let me know what you think.

This guy has CIDP, Chronic Inflammatory Demylinating Polyneuropathy, has been through Plasmapherisis, IVIG etc. and posted the following

"after visiting my parents in Florida (for Easter) and at the urging of my father I started taking a formula of grape juice, apple juice and vinegar, by December I felt so good I no longer needed to receive the Immune Globulin, I still have the symptoms but my energy level is near normal. If anyone is interested here is the formula, one can of Welch's 100% Concord grape juice concentrate (yellow top can), one can apple juice concentrate (I use Seneca), three cans of water,not six (I use filtered water), eight ounces of apple cider vinegar, mix. Take two ounces a day. If this has an effect please pass it on. jimmie
----------------------------------------------------------------------


Okay guys. What do you think???

Mel

[nide44]

Drinking vinegar, daily- is the secret to longevity throughout the Applacian Chain. Just ask any octegenarian in the hills about it.
They'll say thier mom made 'em drink it, sayin it was good for 'em.
Been doin' it ever since!
The apple and grape juice seems to be a way to get it down more easily- and have good properties of thier own, according to some vegan and health food fanatics.