Hi. I'm a nervous wreck.

We had no preparation for this. We knew the doctor was trying to get him approved (he was denied this morning), she called another doctor, he got approved (something about not using the right codes), blah blah blah.

So the hospital just calls me and says "Tell him to come right in, we have a bed for him". I said "what do you mean, you have a bed, where does he show up?" I had no information up to this point. So I calmed down, he just left, he goes to admitting and he gets a room. At least this is what I am led to believe.

I tried to find out where they do the IVIG, so I called the 5th floor at methodist and because he is not there yet, they don't have any info. I tried to find out where he gets the IVIG, (at the bedside, or another room) and they told me "everything depends on the doctor".

So I KNOW NOTHING. All I know is I just packed up his stuff, kissed him goodbye, he's on his way and he'll be there for 4 days!!!

Good Lord, they could have at least given us some notice. Is this how it's always done? Oh, and I checked with ALL INSURANCE INFORMATION. He's covered completely. For home infusion also. Not bad, this Blue cross/blue shield insurance!!!

I wish someone could hold my hand right now. Never expected this.
I couldn't go because with my arthritis, I can't take trains. I'll get the access-a-ride and go tomorrow and see what is going on.

I don't like to Not Be In Control (if you know what I mean).

Mel

Melody,

I am holding your hand through cyber space.

I know exactly what you mean about needing to be in control as I am of a similar disposition. I am sure Alan is being well looked after but I can understand your concerns especially as this all came a bit out of the blue.

Lupin

Thanks Lupin, I needed the hand holding.
I never expected to get a phone call saying "we have a bed". It's like I'm shell shocked.

My husband and I are never apart. We've been married for 26 years. Only when one of us has been in the hospital for something or other (and then, we at least had some warning, like two days and we would get ready).

This was not expected. And I was supposed to go to Dr. Fred tomorrow for a test, so I call to cancel and Dr. Fred was nearby and Alan spoke to him and Dr. Fred said: "Alan, you'll be fine, don't be nervous". Alan goes "oh, I know I'm in God's hands, I'm fine". So he got to speak to Dr. Fred. Dr. Fred has to be the kindest doctor I have ever met.

So I'll post again when I go and see him and tell you all about the ivig. I do hope they let me sit with him during this procedure. I wonder why it's 4 days and then it's at home. They really need 4 days to monitor the infusion???

Must be some powerful stuff going into him.

Thanks again,

Melody

Melody,

I have been with my partner for over 30 years, we were teenage sweethearts, and we are rarely apart so I know just how awful you must be feeling being without your Alan.

You will get to see him soon and remember that although this is not how you would have liked it to be, as you had no time to mentally prepare for this, he is in good hands and getting good treatment.

I know that won't stop you worrying or missing him!

Lupin

Melody,

Its actually great that Alan gets to stay in the hospital for the first rounds of IVIG - that way they can watch him closely for any side affects, etc.... and will be easier for him not having to go back and forth every day for the infusion. Also, once he gets to do them at home - he'll find its much easier - the nurse shows up - your meds are already there - you get all the attention, and they are done!

Can you go hang with him at the hosital? The infusions frankly are pretty dull! - I'm sure he'll appreciate the company....

Not sure where they wuold do the infusions as an inpatient - I had my first five rounds (one day apart each) at the hospital as an outpatient - they did it in the same unit they do chemo, remicade, etc.. as the nurses are required to check your vitals frequently during the treatment.

Wish him well

Melody,
Just think. When he gets home and eats your cooking, he'll think he's died and gone to heaven.

Sure hope everything goes ok. Hospital is the best for this stage of the treatment.

Billye

Thanks for all the kind words.

I actually don't know that much about what happens (or might happen, that's what scares me), during this ivig thing.

The lady (see my story about her under the titled thread "Dr. Fred gave me a shot). This blind lady told me that she had undergone IVIG for her MS and that she did it for a year and that it helped her.

You can do IVIG for a year?? She said she had it done at home.

So I gather a nurse shows up, hooks you up to an iv and you just sit in a chair and wait. Does the nurse wait with you (at your house I mean). How long do these things take anyway?

And most definitely, I'm going tomorrow and I'll go every day (I'm even bringing muffins). Thank the lord for the Access-a-ride. That's all I can say.
For 2 bucks you get door to door service anywhere in the 5 boros.

Best thing in the world (when they are on time). When they are not, well, you wait and wait. But when you don't drive and can't take trains, and have no family, well, you call Access-a-ride.

I wonder if they have this in each state?????

Mel

I know it's all happening a bit fast now? I am sure Alan will be fine, so please try not to worry. I know it's easier said than done,but this is a good thing that is happening.

Please give Alan my best, and wish him good luck from me.

Home infusion (and in the hopsital) varies depending on the type and amount of medicine that the doctor prescribes - there are variables regarding the type you receive that the doctor will prescribe - and also the infusion rate usually is started very slowly, increased every 15 minutes for the first hour, the set at a single rate for the rest of the infusion... Dahlek had posted some websites about this - (sorry, my computer is just recovering from a breakdown and I lost most of my website info) - but everyone is different as far as length of infusion - speed and frequency, etc.... (for example, mine last 4 1/2 hours - some peoples only last two - my doc had me having them every Friday, then switched to every other Friday, others have them once a month...... they will monitor Alans blood counts, side affects etc, and see if there is any improvement also in determining what will take place going forward...

When they are done at home - you have your own little hospital pack - IV's, IV pump, etc. etc. and are delivered to your home by the agency.. the medicine usually arrives the day before mixed in the IV bag and goes straight into the fridge...... the nurse is sent out to watch only the patient and again, its much easier I think then in-patient.... (they are supposed to stay the whole time with the patient too - no running errands etc)

For those of us that IVIG works for - its usually a life-long process to try to stop progression of the nerve damage - and we're lucky to get the med..... I'll tell yai - right now my infusions are on hold while other testing is being done and my legs have not ached this bad ever - so it does help some of us! Hopefully Alan will be one it does....

Mel, you are going to be fine. The nurses at the hospital are going to love you! Your husband will be the best cared for man in the ward! Between your muffins and the laughter, they will all be in there checking on him ! As soon as you get over the speed bump of today, you will have it all under control. You always do!