Wow, he walked in the door at 3 pm. and it was not what I expected. It was very very nice, very supportive and fit him very nicely.

His doctor put some purple stuff around his ulcer, and when Alan placed his foot in the shoe, the purple stuff went right where it was supposed to and the doctor simply took out that portion of the insole, so Alan's ulcer can "free float, I guess you would say" and Alan was good to go. He is to wear it everywhere and only take it off when he retires for the evening.

I wish they did this last year. Would have saved us 11 months of ulcers.
And the cost wasn't that bad. It was $150.00.


He had his two infusions on Wednesday and Thursday, (do you know that on the bottom of the pump, it says "if this is not returned, you will be billed $1800" This little thing is $1800?? My goodness!!!

But, at least I got to speak french for two days. Alan put his headphones on or he fell asleep from the benedryl. Oh,I have a funny story!!

Alan woke up with a very deep voice on Tuesday. I didn't know if it was allergies (he has been rubbing his eyes) but he had no fever.
So while the nurse was there I just took out my mom's stethescope and asked her to listen to his lungs. I mean, I'm no medical person and who knew if he had some congestion going on right? Well, she was about to do this when Alan says 'no way". I said "what's wrong with you, let her check out your lungs, she's a nurse". And Alan goes 'no, there's nothing wrong with me". So of course she had to step back and sit down.

I got so mad at him I started yelling at him in french and the nurse and I were having this whole discussion in french. I forgot how the word "stubborn" is said in french. I asked her "what is the word for stubborn in french?" She said something that sounded like TATOOOO!! So I said to her "Il est tres Tatoooooo (he is very stubborn) and we both started laughing. Alan said "what are you saying about me?" and I looked at him and said "vous etes tres Tatoooooo, (you are very stubborn) and he goes "well, a tatooooo to you toooooo". I never saw the nurse laugh so hard. Alan got hysterical.

We must have laughed for five minutes. We were tatoooooing each other left and right in French. If ever there was such a thing as a fun infusion, we had it in our house.


He sees his neuro next week (he hasn't seen her in a LONG time). I gather she will determine if the ivig is doing it's thing.

So we shall see.

bye for now.
Melody

Geez, 1800 bucks i would be putting a chain and pad lock around the fridge at night and i am as Tatooooo as they come too wish him luck for me for the neuro exam and thanks for the laugh, once again.
all the best,
Brian

Brian, the little pump thing alone costs $1800. The medicine in the fridge is worth $8000. (You'd put the chain around the fridge)

The pump is not in the fridge. Am I supposed to refrigerate the pump??? I never thought of that, because logically, computers are to be kept in a cool environment.

The pump is cheap compared to the meds.

I still can't believe I have a little gadget sitting in the box in my living room that is worth $1800. My own Hewlett Packard Computer, with 200 gigs hard drive and 1.0 GB memory, my webcam, my flat screen monitor, and the printer ALL TOGETHER, didn't cost $1800.

My god, who invents these prices of these things???

mel

Unbelievable, i was thinking that the medicine and pump was all together in the fridge and thought that was steep, but $8,000 alone , i will change it now, i would be sleeping next to the fridge, armed with chains & pad locks and one eye open
, but seriously how can could they justify that amount ? one doc used to do lazer accupunture on me and was complaining about the price of the lazor machine, he said it cost him $2,400 just because they class it as a medical item, really i couldn't see any more than $400 worth of electronics in it, probably made in Japan for about $30, its a joke really.

Did you have to buy the pump? We used to have our durable good supplier just rent them to the patient. Maybe things have changed in 5 years.

Nope. Everything is being billed under some category known as durable medical equipment, through Medicare. Can you imagine even renting such a thing? It fits in the palm of your hand and it costs $1800.

I find this absolutely amazing.

Alan is very lucky indeed.

Now I have no idea if his neuro will say (on his never vist next week), "Oh Alan, we are going to continue the IVIG".

What makes a doctor say: "no, this isn't working", as opposed to saying "oh, I see that it's working". The only difference in Alan, is that the day after the infusion, he is able to sit at the kitchen table and his feet don't burn.

But honestly, when he sits in the living room watching tv, he is always moving his foot (because of the PN).

Now the best thing that happened to Alan was when he went to the gym 3 times a week. He was a different man. His pn was much much less severe and he felt great doing all the weights.

But then he got the ulcer, and it kept getting worse. So now we have to wait until it heals and off he will go to the gym again.

Melody

Melody if you get a chance and remember, when you see that neuro who said she is seeing more of this in Brooklyn, if they have a world trade center connection, the people she is seeing with it. Thanks.

Joe:

It wasn't the neuro, it was a pysiatrist. She was some kind of physical therapist and then some!!!!! Alan only saw her that one day.

She had him hopping on one foot, and walking on his heels, and doing the same kind of things that neuro's make you go through during an exam.

She is based out of Methodist Hospital in Brooklyn.

From what I remember, she indicated that since the world trade center she has seen many people (who were there on the site and afterwards, helping out), these people thought they had diabetic neuropathy, but it was deemed that they might have been exposed to something at the world trade center.

I mean, look at all the pulmonary cases that have developed since that morning on 9/11.

I remember being in the coffee shop with Alan when it happened and we just stood and watched (like the rest of the nation did). Then we had to go to Coney Island Hospital for his acupuncture appointment. I remember calling to see if the appointment was still on and they said "yes, do come in". As we drove along the Belt Parkway, it was like seeing a mushroom cloud going miles and miles up in the sky. We couldn't believe it. Then, when we arrived at the hospital, forget about going in, there were cops all over the place and search dogs, and I said to one cop "what's going on" and he looked at me like I was crazy and said "don't you know we are at red alert, we're at war!!! See, no one had known yet, what had really happened.

But what really was INTERESTING!!(well, I don't know if there's a word to describe what we saw when we got up the next morning)

We got up and as we left the house, we noticed all this white stuff all over the window sills, the front of the houses and over all of the cars parked on all the street. Everybody came out of the house and said "what the hell is this stuff?" I knew immediately that it was fallout from the explosions and when my landlord came out of her home, I told her "get back in the house and close your windows, you don't want to be breathing in all this stuff'.

Everybody was hosing down their windows, their porches, and washing off their cars. Absolutely every single house had this going on and every single car had this white dust coating.

And then years later, all these people came down with pulmonary troubles and the government wouldn't help them because they were not official workers (or something like that).

Very sad.


Melody

If you ever run into her again, or are at the hospital, if you can find out her name i would appreciate that. That is how i got it, plus respiratory, and of course i get stonewalled and blank looks from medical people.

No Problem Joe;

I'll get her name and send it to you.

Melody