as if he's tolerating it well.
The heparin is a blood thinner to keep his IV line free of clots. Simple, easy, painless and important. Not much is used, so there should be no worries, it's just a preventative measure.

More important tho, is, HOW IS HE FEELING? Like, has his pn pain decreased? Tho he may not feel any improvements right away, if he is it would be wonderful that it's helping.

Kmeb is right that the infusion rate is important in relation to side effects, a lower, slower rate is far better! No question about it!!!

Don't forget to bring more goodies today...these nurses work strange shifts on different days so you may have the same nurses or not...Gotta spoil them!

Hugs and good thoughts for both of you! - j

Hi Mrs. D, Dahlek and everybody. Hope you are doing well!!!

Just spoke to Alan this morning. It was 9 a.m. and he was eating his breakfast. He had been given the second infusion at 4 p.m. it became occluded but they fixed it. I had thought (well, it's 4 p.m. so probably they will give him his third infusion at 4 p.m. on Friday, right??) I asked the nurse and she said "oh I have no idea, we never know, it's what is in the computer.
So I left yesterday, mistakenly thinking that the third infursion will be given today at 4 p.m. this afternoon.

Well, I just spoke to him during his breakfast and he goes, "guess what, I am on my third infusion". I said "really????" they don't have to wait 24 hours before they give you another one (this is where I get confused). He said "well, apparently not, I'm on the third one, and guess what? my feet feel great". I was a bit skeptical because yesterday he told me his feet felt good during the second infusion but then when he laid on his back the pins and needles came back (but not so severe).

See, his problem is positioning. He is fine if he is at the gym, walking around (well, usually he is fine). But if he lays flat on his back or goes into a sitting position, he says his feet are "doing a dance". That's his expression. I remember telling his neurologist, "doesn't this indicate a back problem" and she would say:"well, it could be both". I remember thinking "both???" who has "BOTH". So who the hell knows.

BUT, just now he was explaining. "Melody, I can lay on my back, it doesn't hurt any more". Now this could mean, 1., it's starting to kick in and it will work, or 2. he is psychologically convincing himself that it's working (believe me, Alan is capable of this). What's the word when a person is easily persuaded that he's getting better but it's all in his mind. There's a word but I can't think of it. 3. It is working, but it comes and goes intermittently.

I have no idea. But the good thing is obvious. He can tolerate it. At least so far. And thats the important thing. Because, believe me, if I had truly read what Gamimune can do do a body, I don't think I would have encouraged him. But he was gung ho and he's had this for 18 years and he needs some thing to live for, so why not this.

OH I have to tell you another funny story. The guy next to Alan is a man (stroke victim, named Abdul). he speaks no english. And the doctors can't get him to do anything and he won't let any female nurses or aides near him. He pushes everybody away. Well, the other night, Alan swears he heard him speaking english in hushed tones over his phone. Now the guy (to outward appearances can't speak a word of english or anything else). His native tongue is FULANI, and it is in a big sign over his bed. Patient Speaks Fulani.

So after all the visitors leave, the guy is now unresponsive to the doctors. Three doctors come in and they are trying to get the guy to stand up and get back in bed. He would have none of it. One of the nurses says out loud "I think he speaks French besides his arabic. Now what other language does Melody speak???? FRENCH.!!!!!!

Since this guy won't let any female touch him (clean him, change his bed, ANYTHING!!!), the nurses got disgusted and left him. The doctor couldn't get him to do anything. I said "Mind if I try, I speak French"!!! They look at me like I've lost my mind, and I go to the guy "Excusez-moi, monsieur, ecoutez l'homme, levez-vous, and respondez, s'il vous plaites". translated that amounts to, please get up, listen to the man, and do what he says, please!!!!

The guy knew what they wanted him to do, he just didn't want to do it. The look on the guy's face when I addressed him in french was priceless. But he still wouldn't go along. Two men had to come in and physically put him in the bed.

I learned french for a job over 35 years ago and since all the Access-a-ride drivers speak French,I get to speak it almost every day so it's no problem for me. Although it drives Alan crazy when he's home, and I come home from a ride on the access-a-ride and after speaking french for an hour, I forget my english, I walk in the house and I start speaking french to Alan. He simply sighs.

and thanks guys for listening to me and my updates on Alan. You guys are always the best!!!!!!

I have never met anyone with as many stories and experiences as you have! I know when I read one of your threads that you have updates on whatever is going on at the time and that you will usually have a story or two to tell, present or past. Thank you for all of this.

Remember the beam me up Scotty thread a while back? Well, here you go.

Hi Diana:

And I'm sure I'll have many more in my lifetime. I seem to draw the kind of experiences (maybe it's my bubbly persona), I have no idea.

Oh, here's another one to make you smile.

Yesterday, while I am on the access-a-ride going to the hospital to see Alan, we had to pick up a third party. Now all these people who ride the acess-a-ride are disabled in various ways. Some are 500 lbs., some are elderly people, etc.

So we stop in front of a bank and there's no one on the sidewalk, so the driver goes into the bank to see if there is a person waiting to board the acess-a-ride. He comes out with an elderly gentlemen who had a great deal of difficulty walking to the bus. So he's going step by step, inch by inch. As he gets to the front doors, I pop my head out and go "Hi there, take your time" He smiles at me, gets on the bus and starts hollering out loud "Praise Jesus, I knew the Acess-a-ride would get here". The other lady on the bus starts shouting out loud "Praise the Lord", The old guy starts going "HALLELUYAH". Me???? I shout out AMEN BROTHER!!!

I thought the Access-a-ride driver would have a heart attack, he laughed so hard. So all the way to Methodist Hospital, (10 or so minutes), everybody on the bus is Praising Jesus or saying Halleluyah!!!

If you think I wasn't going to join in, you don't know me. I never laughed so hard in all my life. I had Alan on the floor with this story!!!

lol
mel

P.S. I love your beam me up scotty

Oh Mel, you keep us all going! I love to read your stories! Thank you for sharing with us! Sometimes we come here with our whining and complaining and it's nice to see a bubbly funny story to cheer us up! I come here every day just to check in and see how everyone is, even if I have no news myself. It's better that a T.V. drama, it's real life, real people, with real stories. I wouldn't know any of you if I passed you on the street, but I know your hearts, and your sorrows.
Thank you all for sharing!

Melody--did Alan have any anti-nerve antibodies at all? Did they decide to do this just because he had a high csf protein, and nothing else, or were there other antibodies? Also, would you say he is having an exacerbation over his normal level of neuropathy?

is maybe working? Sure hope so... So what if his 'feeling' that it's working is psychological...WHO CARES? It's viable only if it's working and keeps on working. At the price this precious STUFF costs...well, IF'n it doesn't work, he won't get more.. There are tests, blood tests and the neuro tappa-tappa's and other things that help determine it all. Blood tests should nearly always be done after the first couple of rounds either the day before or exactly right before infusions are given..at the low point before one is re-charged. Read up on the Gammiagard Baxter meds brochure on web sites... Some blood normals change due to the extra work the liver and rest of the renal system have to do because of the infusions. Read up on the various 'Multifocal Motor Neuropathy' boards and get a handle on how folks using this product both react and respond to IVIG. It's an eye-opening experience, and one that folks w/many other conditions speak on as well. They do it far, far more eloquently that I ever could.

MOST IMPORTANT tho, is that he IS getting some response, that response is positive and that [I WILL SAY] HE'S DURNED LUCKY TO GET IT! Some folks have to wait several months to get it and live in total misery. How often and for how long he gets it will be up to his docs... Some of us have greedy bodies, others can get by w/it every 3-6 months..some need it every 3 weeks. It's a time-killer for sure, but, [can only speak for myself here] all other appointments revolve AROUND MY INFUSIONS! I could be asked to meet the president or the pope, but NO WAY if it were on my infusion days..It's kind of like: OOPS? You want us to get 'married' WHEN? Humm...no can do on those days! I don't think I'm the only IVIG person thinking that way...

Feel free to PM me w/any questions tho..Most stuff I'd like to keep open on the boards tho, as more folks need to know what IVIG can and can't do.

Hugs to you and Alan for the duration...BTW, when does he come home? - j

BTW: Just finished my '2-day round' for this month...I've gotta get busy and get lots done before it wears off!

Liza Jane:

You said: "did Alan have any anti-nerve antibodies at all? Did they decide to do this just because he had a high csf protein, and nothing else, or were there other antibodies? Also, would you say he is having an exacerbation over his normal level of neuropathy?"

Well, to be honest, all I remember (during our visits with Dr. Goldfarb is that she checked his test results and said "oh, he has elevated protein, that makes him eligible for IVIG, don't worry, I'll get him approved, and she did and now he's doing it". Don't know anything about anti-nerve antibodies, sorry!!!

Now you ask if he has had any exacerbation over his normal level of neuropathy? I take it you are asking if his neuropathy has changed or gotten worse, is this what you are asking? I can answer this one in a flash. He has not gotten worse, in fact, according to the fact that I just came home and left him doing yoga, I'd say he's feeling a lot better. He is able to lie more on his back then he ever could and normally, he would have to be walking around to get the PN to stop. He is NOT doing that in his room at Methodist. He watches tv. He sits and lies down on the bed. Oh he does get up. Like today, after his infusion ended (from 6 a.m.), around 1 p.m. he took a shower. Then I put lotion on arms and legs and face. He does have very dry skin so the lotion helps. I did notice a flare up of his psoriasis around his ears and on his arm. That seemd out of place. Maybe the anti-bodies are causing this to flare up. I have no idea. But the PN had definitely NOT gotten any worse. And in fact, seems to be easing up. I hope this is just not wishful thinking because from what I have read about IVIG, this is no immediate fixer-upper. It takes time. But I just got off the phone and he's chattering away and he's not in pain.

But remember he is still taking his cymbalta 120 a day. But before the ivig, even the cymbalta did not take the PN away completely.

So, all I can say is, he's doing fine, he only had a slight headache today, his PN is slightly improved and that's a good thing.

And tomorrow the neurosurgeon is supposed to pop in and discuss his spinal stenosis stuff. I hope I'm there when the guy shows up. This doctor already has the mri films of Alan's lower back. So we shall see!!!!!

Hope you're doing okay, Liza Jane

and hugs to you to my Dear Dahlek!!!!!

mel

Well, since he has never had one before, this threw him for a loop. He told me today "Melody, I never had such a headache in my life, I had such nausea!!!! I said "well, did you tell the nurse, and he said "oh yeah, they gave me two tylenol and I went to bed at 2 a.m.

They gave him the 4th infusion this morning.

Now this is what is confusing to me. A neurologist (substituting for his own neuro, Dr. Goldfarb), came over to the bed around 3 p.m. introduced himself and of course I began asking questions. He explained somewhat of the home infusion (and they will arrange it) but what he couldn't tell me was:

1. when does the meds arrived (or does the home infusion person bring the meds with them).

2. Do they hook him up, stay with him during the infusion and then unhook him??

3. How long is this home infusion, (in hours) and how long is the whole treatment plan?

I tried to ask this doctor (in a very respectful manner) but it was obvious he couldn't care less and was just checking to see if Alan survived the ivig and then be on his way. I mean, I can read body language if you know what I mean!!!!

I even asked him "how does the ivig thing do its thing?? how do the antibodies, when they leave the bag on the iv pole, exactly what does it do inside my husband's body (I know the answer because I got it from these boards) and I just wanted to hear it from this guy's mouth.

Well, he looks at me and says "I have no idea". Can you believe this???

I just thanked him for his time. He said "Dr. Zonenshein (the spinal surgeon) will be in to see Alan (he never came, and I'm not calling him). I'm not about to go bother some doctor who I never met and Alan has not even arranged an appointment with yet. This doctor's office has told us that this particular neurosurgeon will see Alan while Alan is in the hospital. So Alan is supposedly getting discharged tomorrow afternoon at around 12 or 1.

I hope the neurosurgeon has popped into him by then. If not, Dr. Goldfarb will consult with him.

Today, I sat by my husband's side, he was fine, he tolerated it fine. The neurologist did say that if Alan wasn't going to tolerate it (severe side effects, allergic reactio, kidney failure), he would have had it by now. Nice to hear he survived, right????

Then they bring in a guy and put him next to Alan. The guy goes to me "I'm a vampire". I said: "I beg your pardon"??? He looks at me and goes mm mm mm, (Like he's looking at an ice cream sundae). The nurse's aide attending him says to him "why are you looking at her like that, her husband is right next to her", and the guy says "I don't care, she looks good". Alan nearly fell off the bed and I, well let's just say, he did a lot for my ego.

By the way, the guy had to be about 75 to 80.

I STILL GOT IT GOING ON!!!!!!!

lol
Mel

Hi, just wanted to drop in and give you a few tips about IVIg. I had plenty. The headache can be rate related. Sometimes and not to scare you, patients can get what is called aseptic meningitis. So if Alan's headache, migraine continues you have to let the nurses, doctors know. Most likely it is the rate, if it is too fast, more likely side effects can occur. Are they checking his blood pressure? What you should find out, is what rate is safe for Alan. What does he tolerate without running into side effects.Don't let them run the I.V. too fast.If his headache went away, it is probably the rate may have been too fast.Also they usually pre-medicate with Benadryl also.

As for home care, my experience was not too great. Have your doctor write a rate per hour and if you can have it done on a pump. If you cannot get a pump and your neuro orders so and so amount in four hours, make sure that is what it is done in. I found most of the home care people , think if pulse and b/p are ok, bingo they can up the rate. Don't let them do that. Yes the nurse stays. Don't let them tell you different. They start the I.V. and remove it. Find out how many days the treatment is and for how long they leave the hep lock in. The drug company will deliver the meds and supplies. Most important is, find out the rate from the doctor, the brand, the amount in grams he is to get, if he is to get pre medicated with Benadryl and Tylenol.
IVIg can do wonders for people but it is to be given with care. Reactions can occur with different infusions or at different times.Most likely he is doing fine with it.

The people on the myasthenia forum know a lot about it too. You can always pop in there with questions also. Continue to be your husbands advocate. That is the best.

I do not post much but I get a kick out of your post. I get a kick out of your stories, I am in New York also and laugh of your stories of Brooklyn, etc. Best wishes,