Being tired is not...
 

unusual at all after infusions. And the extensive 'introduction' Alan had, combined with all the 'keeping still' that a hospital entails, would wear a person out. Nowadays, after my infusions at home, I'll take a 2 hour nap and be just fine after that.
I attribute the tiredness to the hefty dose of pre-meds I take prior to the infusions. After that, I'm fine until it's time for more, about a week prior to the next infusion date.
Getting the blood work at a docs' offices or a lab IS better than getting the blood work taken from the home service. The blood test results aren't complete if it's drawn from Alan at home. It's usually once a month at first...the day before or a couple days prior to the next infusion. They do this to check if your #'s change for your favor as a result of infusions and also to check the stress they may put on the liver. Then tests are done every 3 months as precautions, to be sure all is well.
Home infusions are easy to do, Your meds are delivered the day before you start, and included should be the pump [usually a portable one you just plug in to charge], all the gloves and other stuff needed to get the line in, etc. The IVIG bags go in the fridge, you take one out an hour before the nurse is to come...so's its not COLD going in you and the nurse comes, sets it all up and anywhere from 3-4 hours later you're done and the nurse goes. She'll check the rates and adjust them, take the temp and BP at intervals and see all is going well. That's it! Until the next time....
I find the home service far easier than going to a hospital or infusion center as you don't have to go to and fro...wait while somewhere else, and just doze off if you want after, or go out if you feel well. I will be up to your doc tho to decide which way to go in getting infusions. And Alan, of course, if he feels he's getting some improvement after a few rounds.
If you planned of getting a job, by all means do so! He will be watched by a professional the whole time it's all being done....I've not had any reactions at all while getting it at home. It's a no-brainer!
Just look up the brand he's getting and READ, almost memorize, that brochure. While most address other medical conditions, the reactions and facts are the same for any use. Twice I've had reactions, the first a rash-fixed by topical steriod ointments, and the second-they don't know what happened. I've had infusions for almost 3 years...every month and there's no problem at all.
Hope this helps! - j

Thank you so much for the information. There is no way on God's green earth that I'm letting a complete stranger into my home while I'm not there.

Imagine Alan hooked up to an infusion pump, he gets tired, he falls asleep and there's a stranger in my home!!!

I've learned from past experience (salesmen, repairmen, satellite tv installers), to never let anyone in my home without one of us being in the same room. I can't depend on Alan being up and alert during his first infusion.

Maybe after a while, but honestly, I would never feel comfortable. I once had a delivery man delivery groceries to my house. (This was in my old apartment), The next day, someone came up and stole my son's bike from right in front of my door. The delivery man was no where to be found after that. I wish I could be Mary Poppins and completely trusting of everybody.

But that is no longer the case because of what people have done to me.

I am very cautious and remain so. I wish we still lived in the Leave it to Beaver (an old tv show from the 50's). People actually went to bed at night with the door unlocked. They left their front door opened during the day.

I can't imagine doing that anywhere anymore. Certainly not where I live.

No, I'll just wait until the weather gets warmer, Alan gets a few rounds of home infusion under his belt, he gets blood work, THEN maybe I can concentrate on ME for once.

Thanks hon.

Melody

Maybe I've been lucky?
 

But, I too was reluctant to let a 'mere person' into my house and 'stay'. I got a super smart, alert infusion nurse. All the comforts I've got and truly want to provide are a fresh batch of brewed coffee and I'll provide some sort of bakery stuff, which she may or not partake of... That's it...She's NOT gonna judge how clean or not your house is...Mine is NOT up to MY standards, but it's not a dump either? Ya know? The nurse I've gotten, well I am NOW ON HERpreferred patient's list? Whooee! I've passed muster w/someone?!!!! Believe me, we are now both trained to each other and it's a really comfortable relationship. She comes...does...and goes...we set up appts for the next month and...welll that's IT! In my area, my nurse probably travels at least 100 miles to and fro patients each day! It's amazing, as traffic in my area can truly wear down the teeth as you grind them!

What to DO? Well, be there for the first few...and then..that's what cell phones are for?! Call and check in...get answers etc. and go on with life!

These service nurses are usually Licensed, bonded, and insured...so there should be no problem at all! Suss it out on the net! To me, it's one of the safest, resources you could find in this day and age...

Hugs and DO IT! - j

Suss it out on the net???? What one earth does that mean? Is that an australian saying??? I do love how you talk!!!!

I know exactly what I'll have on hand when the person comes. MY MUFFINS!!!

I haven't heard from Alan's neurologist yet. I've placed two phone calls to her assistant's answering machine. It's a very busy practice and everything goes through Zoya, her assistant. Sometimes, she picks up but lately, it's the voice mail.

Oh well, when Dr. Goldfarb wants him to come in for something, I guess she'll call us.

Oh guess what I had done yesterday?? A bone density test. Ever have one of those? This is my third one in about 7 years.

The first time I went, the report said I had osteopenia.

The second time I went the report said normal.

Now yesterday, when I got up off the table, as I was talking to the people in Dr. Fred's office, the girl came over to me and said "oh by the way, you're normal". I said "oh, normal, as opposed to what? (I just wanted to be clear) and she said "well, abnormal". So I said "you mean I don't have osteoporosis or anything like that?" and she went: "exactly". So I said "wow, I'm almost 60 and my bones are normal, isn't that something??" And everybody burst out laughing.

So I have normal bones. My joints kill me, but my bones still rock!!!!

What a hoot!!!!!!

mel

OFF TOPIC...sort of?
 

UMM, err, Melody...did anyone advise you NOT to take any calcium 1-2 days PRIOR to the Dexa test? They should have. Just A thought as I went thru that all last month...It's a thing one forgets? I surely hope you were the perfect patient and had 'abstained'! I know I hate skewed/false numbers myself!
Hugs! - j

I do not take calcium. I did many years ago, but it constipated me, so I never took a calcium pill since.

I do eat a very heart healthy, diabetic healthy, ALL HEALTHY diet, consisting of fish, veggies, salads, extra virgin olive oil etc. We went to a nutritionist. I do take my B vitamins every day (thanks to reading on the boards).

Alan and I never, and I mean never eat any red meat. Haven't for years. Not that this applies to anybody else. We just started doing this years ago, then when we went to the nutritionist, she slammed it home with "if you can avoid red meat, please do so". and we laughed and said 'are you kidding, we haven't eaten red meat in years"

We eat poultry, in addition to the fish and when we want a dish of spaghetti, I use Dreamfields, which only has 5 grams of carbs.

Doesn't impact my diabetes, and tastes like SPAGHETTI!!! The sauce is full of lycopene, so that's healthy!!!

I'm a fish person. I could live on grilled salmon, filet of this, filet of that!!!

Alan likes the way I make tilapia.

Oh, I don't use a lot of salt. I do use Salt Sense which is 33% less than regular salt. But Alan uses no sodium whatsoever on anything and I don't cook with it.

So if my diet has contributed to my healthy bones, THANK GOD SOMETHING IS HEALTHY ABOUT ME!!!! It sure isn't my joints, not in this weather. It's hailing, sleeting outside something fierce. And yesterday it was almost 70 degrees. This weather is absolutely nuts!!!!!

Mel

Good, just read up tho...like blood tests...
 

esp for Alan w/the IVIG, things can ever so subtly skew? We DO NOT WANT THAT?

Diet sounds almost perfect, but, I'm no saint and no dietician! I do know where I 'could be more good/better' but....well, we are all human...

OK dear, WHEN are you going to start your own blog? Or have you?

I really do need all your diabetic recipies in one place as I live w/a type II er and at times really don't want to be, well, THE FOOD POLICE? As cats say, I'm due for a 'nap' now!


Good thoughts in a super way to you! - j

Trust me, my diet isn't almost perfect, It IS as perfect as a human can get after being obese most of my life. Our doctors are pleased as punch that, we are able to follow this eating plan. Alan lost all his weight. I'm amost to my goal. It's harder for me because I'm diabetic (I have a friend who can't stopping snacking at night, her sugar is always 265, she won't talk about it, she won't get the right meds). I've struggled with weight all my life. Finally the lightbulb went off in my head and I don't screw around with my diet anymore.

When you see NEUROPATHY and, I only have the beginnings of it, I DON'T WANT IT TO GET WORSE!!!

I will do whatever I have to do to maintain my health. And so will Alan. If that means, no more junk food, not too much of this or that, well so be it.

Ever watch the Discovery Channel on tv? I don't know if you get it where you live but they do these tv specials on obesity and my goodness, some people way over 1000 lbs.

It's heartbreaking to see someone so ill, with neuropathy, and vascular problems and they always say "I can't stop eating".

We are just thankful (even though it took us all these years) to get it right.

And by the way, I know what a blog is but WHERE CAN I DO A BLOG?? that you can see my recipes???

Let me know, okay??

Mel

there are different site that offer free blogs...but...you could start your own thread here. :D

Curious: I'm confused
 

What do you mean, I can start my own thread here??? This is a peripheral neurathy board, right? Is there a blog board too???

Or am I just plain dumb??? lol

mel