Had the meeting this morning........
 

Well Mike and I went to meet with the Principal this morning about my returning to work part time for a while. It seemed to go well......the Principal wants me back....but said he has to talk to Personnel and see how they can work around the part-time request. He will call me and let me know how things go.
Please keep your fingers crossed for me......I need this job to keep my insurance!
Also we stopped and talked to my dr. office about the IVIG totally knocking me for a loop for 48 hrs after I have them. The nurse told me that's normal and should slowly get better over time....but if it doesn't after a couple more infusions then I should tell the dr. and he will lower the dose. Since I was able to go all day yesterday with out pain I know they are working. So I'm going to go a few more times and hope the side effects get better.
Y'all are the greatest! I've so enjoyed being part of this forum. Hope y'all have a great, pain-free, week.

Hi Roxie:

I find it absolutely amazing that your pain level has been affected (in a positive way). When Alan began the IVIG, he was specifically told, "well, it really does not impact your pain, it will help your balance, and well, hopefully, it might help with the pain, but honestly it was not designed for pain, but for autoimmune issues, blah blah blah".

Now Roxie, I know people who are on IVIG and were in wheelchairs and if they weren't on the IVIG, they would still be back in their wheelchairs. It seems to boost the immune system, therby boosting their balance and they can now walk.

So in your case, boy did you get a bonus or what???

Hope all things work out with your principal.

Melody

Roxie -- I think I said all that I could in my PM's. I am very happy for you . . . at least he was responsive to the situation and your request. All I can add is the old proverb: "Strike while the iron is hot." Just do anything else you can to help him get it done and/or make things easier for him to do what needs to be done.

rafi

Roxie I'm keeping my fingers ...
 

crossed for intermittent periods about all of it all!
I think you did well asking not demanding some accomodations at work and that things can happen for the good of all.
I don't think that there is a person here who doesn't understand the absolute NEED for good insurance and how we could not even at times, HOPE without it!
I do think your doc is taking a good cautious approach to the IVIG. Sometimes it 'kicks in' right away [my case], others it takes a few times [most folks I've met personally who have reactions and are still on it say the s/e's are WORTH IT] to take effect. Maybe getting the infusions scheduled and doses 'adjusted' at the right times [such as getting infusions on late Thursdays or early Fridays and taking Fri off] might do the trick? I do know that my infusion nurse comes early in the mornings [VERY EARLY] and once the Benedryl wears off, I've half a day left to DO things! IF I get anything achy or flu-like, it's a couple of days later and I find keeping a low very low life profile helps keep things from getting worse. Eating light, salads, fruits and soups a couple of days before as well as extra water helps things along. Essentially the tamer the better?
I hope this helps you get thru your next round and then the one after and it all gets easier! Hugs and hope to you! - j

PS I found that any reactions I had were directly related to how FAST the dose was put in...Ask your doc or the nurse next time about when and how the rates are 'upped'! I can go up quickly to my 220 rate, but if they go up slow and do that last at a higher rate - i get some solid headaches! As much as I love my IV nurse and my IVIG...I simply want it DONE as safely and quickly as possible? Safely is more important than quickly...but this is up to each of us and our sensitivities and sensibilities. There is an ART applied here and we all have to learn what works.

HI All!
J, I think my nurse has my IV going in slowly.....it takes 4-4 1/2 hrs for one infusion. I think I get 800cc's......does that sound right? It comes in 4 bottles and she puts those 4 bottles into the IV bag. But I will ask her how slow it is and if it should go in more slowly. It would be worth an extra hr if I didn't have such rotten side effects. My side effects start later in the evening after having the infusion and then last for 2 days after.
Mel, You're right......I did get the bonus with the IVIG with it giving me some time with out pain! I'll put up the side effects for that!
Rafi, Hopefully we'll get good results from my Principal. Mike sent him a great letter this afternoon thanking him for his time and any help he can give us so we have a win/win solution. We SO appreciate all your help!!

Hi Roxie, i just wanted to wish you luck with the employment bit, i hope it all works out well for you and if those side affects are just way to much for you to handle, i would urge you to speak up and let your doctor know exactly how much you suffer after it.
all the best
Brian :)

Roxie, Melody has had some experience with IV rates being hastened for the schedule of the infusion nurse. See what she has to say about it.

HI! Thanks Bob!

Mel, please tell me about the IV rates. I want to ask my nurse about it tomorrow.....Thanks!!

Roxie, when the physician writes the prescription, it's indicated on the bag of Gammaglobulin that is either hanging on the IV pole, or is attached to a pump.

Alan's bag saysd 4 HOURS INFUSION RATE.

That means, when the nurse hooks him up and begins the infusion, it should take 4 hours. NOT 3 HOURS, NOT 3 AND HALF, NOT 3 HOURS AND 45 MINUTES. The slower the infusion, the easier it is on your body.

But, you will sometimes have nurses that have to go to another appointment and that nurse will look at the bag of Gamma and say "oh, 30 grams, we can do a 3 hour infusion, which is 10 grams an hour". I've had 3 nurses tell me that.

I always say "the bag indicates 4 hours, we want 4 hours". Now the last time (when Alan got really sick), one of the visiting nurses did it faster than the 4 hours. Alan felt he was knocked out, got a fever the next day. Well, it wasn't pleasant.

However, when they do the 4 hours, Alan has no problems whatsoever.

So for the past 2 infusions, we have had a lovely nurse, who likes my muffins and we speak french all day long, and Alan is attached to a pump (which she programs, and he gets the 4 hours.

Do NOT LET THEM TELL YOU, oh, you can have a faster rate, it's alright, blah blah blah. You look at what is written on the prescription and you look at what is written on a label on your bag of Gamma (that should be in your refrigerator). You will see it clearly indicates how long the infusion should be.

So if you see that she is rushing the drip, or she says to you "Oh, believe me, you can do this in (lets' say your bag says 4 hours, and she says 'oh you can do this in 3 hours)" don't get intimidated, you say to her very nicely., "the doctor wrote 4 hours, I need 4 hours". And if she does anything different, immediately call up the visiting nurse service (or whoever sent the nurse to you), or you can call up your doctor who wrote the prescription.

You have rights here.

Don't let them bully you.

Be well,

Melody

HI Mel!
 

Thank you for all the info. I'm going to look at my prescription. The nurse has been doing the 4 hrs each time.
We were concerned about the IVIG liquid when we first got it. The infusion center said it doesn't need to be refrigerated as long as it's kept under 75 degrees. We thought that sounded awfully warm so we have been keeping it in a cooler with an ice pack in there.....so it's not frozen just cooled cooler than 75. It's summer in Texas......we're in a heat warning all this week! The temp has been around 100 with an index of 110! Even with the a/c on it's hard to keep the house cool. I guess from now on we'll put it in the fridge when it arrives.
My next IV is tomorrow.......I hope I don't feel dreaful afterwards.
Thanks Mel for all your help! :hug:

Oh forgot to mention.......my infusion is pumped in by little machine, not dripped using a pole.

Have they told you to take it out 30 minutes before the infusion?

They don't infuse the stuff right out of the fridge because your body can go into shock. That's exactly what the nurse told me the first time I learned what to do with the Gamma stuff.

A man delivers it to my house. the bag of Gamma is enclosed in a pouch and the pouch is in a box with cold keeprs right on top of it. The pouch with the Gamma says 'put Gamma into refrigerator". So that is what I do. I then take the cold keepers and put them in my freezer.

Then (and I have all this written down and attached to the wall in my kitchen so I know what to do). I am to take the bag of Gamma out of the fridge 30 to 45 minutes before the nurse arrives. Alan is to take his pre-meds 30 minutes before this infusion.

See, how much you learn so fast. ?????

So you'll do fine.

Melody

Hi!
Mike put my gamma in the fridge after your last message. He's kept saying that he thought the stuff should be refridgerated, even tho it says on the box that it doesn't need to be in the fridge. I wonder what the difference is between the gamma stuff I have and what you have?? The brand I have is Octagam. I'll remember to remove it 30 min before the nurse arrives.

Alan's IVIG thing is called GAMMIMUNE.

Melody

Gosh I wonder how many different ones there are?? LOL

I just read your post and you indicated that you have 4 bottles and the nurse puts the stuff into the IV bag.

In Alan's case, his is already mixed in the IV bag.

I wonder why some people get bottles and I get a pre-mixed solution already to go??

Anybody know??

Melody

It takes my nurse 15 min to get the bottles of stuff into the bag.......then when she gets me hooked up etc......that's over 30 min. besides the IV time......so it sure makes for a long afternoon!

So in Nebraska, the stuff comes to you in bottles and the nurse has to mix it up, but where I live (in NYC), it comes pre-mixed???

I wonder why?? What about all you other folks who have had the IVIG, did it come pre-mixed like me, in a refrigerator bag with cold keepers, and instructions to put it in the fridge???or did it come like Roxie's and they told her "no need to refrigerate".

I am now puzzled.

Melody

I live in Houston, TX now........but I'm from Lincoln, Nebraska.....home of the Huskers! :)

glad to hear the IVIG is working for you Roxie.. and what about that Mel ..she is just so knowledgeable!!

I have a question for either of you .... or someone else if they know..

what is IVIG?

This should help Babs3169 - http://en.wikipedia.org/wiki/Intravenous_immunoglobulin

Hi gang - here are some links that Dahlek has found and posted in the past regarding IVIG and are very helpful - please check them out - also - you can Google the name of your speciifc med to find out info just on it....


http://www.news-medical.net/?id=19244

http://www.primaryimmune.org/pubs/nurse_guide_igiv.pdf

http://www.igliving.com/index.html

http://www.infusionsystems.net/artic...UseofIVIG.html

http://qjmed.oxfordjournals.org/cgi/...full/95/11/717

http://www.resourcenurse.com/feature_ivig.html

http://www.iggamerica.com/control/Co...px?target=FAQs

http://ruralnurseorganization-dl.sli...lain-barre.htm

These are very helpful! There are various types of IVIG - from dry forms that have to be mixed - liquid forms that have to be diluted - liquid forms poured straight into bags, etc... Your dose depends on your condition and amount recieved also based on body weight... your doctor will order the infusion rate, amount, and type of IVIG, based on each individual. Each persons treatment will vary in regards to these elements...

Thanks Dahlek!:)

Wow, lots of info.

Thank you very very much.

Melody

y'all are like having our very own google! LOL
I'm just sitting here.....waiting till my nurse arrives at 12:30ish. I haven't had any pain meds since yesterday morning! It's SO nice not to have to take it and feel groggy from it! My insurance has approved the IVIG till Jan....so I hope by then I'll be doing much better!
How are y'all today???

Roxie, that is ...
 

Well, gosh durn it! Exactly the way it should be!!!!!!!!!!!!!!!
While you may feel as if your life is going to be 'tethered' to the 'line' in the future, well, If you go and read IGLiving 'stories' I think you will learn that you are a small part [ONE] of a much larger community! There are others who need IVIG, and it's the kids and those much, much senior to us all that are the heros to me Access for them is harder and much more necessary.

So, I am 'tied to a 'line' two days a month for a while...Because I am, I can function, walk and not be totally crabby! It's a good deal to have a 'line' hooked up and feel better, unlike folks who get chemo?

Roxie or Babs, if you have any extra questions after reading all the stuff Kmeb posted...well, I've more technical resources of info in you want to know.
Keep in mind I am not a contributor nor anyway involved in IG-living....tho I do think their E-zine is neat as one doesn't have to have PAPER lying around to find out stuff. With my PN I find it difficult to turn pages...can't feel them to turn them! Scrolling down the puter screen is more my speed these days..
BESIDES THE THING IS FREE!!!!!!!! Read learn ask questions...Hugs! - j

Hi Roxie.

It's like 100 outside right now. That's why I have no arthritis pain. Everybody is walking in the street pouring bottles of water on their bodies and I'm perfectly fine. I could live in the Sahara Desert and I wouldn't have any pain.

Alan got the CAM WALKER yesterday at the new podiatrist we are seeing. He gave us a sample of regranex and every morning I am to change the dressing, apply a dollup of the Regranex (this thing is $500 a tube by the way). It is supposed to speed up wound healing. And since Alan has had this foot ulcer for 18 months, I think he's entitled to this, right??

So he is in this black boot thing up to his knee. You should see him put this thing on!!! It's got Velcro Straps like I've never seen. It's a big black thing and it has a pump (but Alan's not pumping because he can't feel stuff in his feet, so the doctor said "do not pump". Not that I understand why one would pump this thing anyway!!!!

So we just went for a walk to do some errands. You should see Alan walk in this thing!! He walks better in this contraption than when he had the oft loading shoe. So we go back to the new podiatrist next week, he'll check his ulcer and then we shall see. He said it has to be completely healed before Alan takes this boot thing off.

Here's the boot that Alan is now wearing:

http://www.sammonspreston.com/Supply...af_Id=55988501

Now I don't know if this is exactly the same thing he's wearing but it looks exactly the same. It has a rocking motion to it. Have no idea why.

What a difference between this thing and the oft loading shoe. Like night and day. That shoe didnt do anything for Alan's ulcer.

Now this thing. Alan is walking straighter, he's not leaning to the right side (like he did with the oft loading shoe). He has shin pads and something over the front of his foot. I'll tell you, when they came into the office and showed us this thing, I said "now what on earth is this". Seems people use this when they have broken ankles (remember, years ago, they put you in a cast??). I have no idea if they still do but now you can get this Cam Walker thing and you can actually walk around. Takes the pressure off the ulcer and it stablizes the foot (Or something to that effect).

We actually came home on the train and a bus and today we went on a bus. Alan (so far) has had no adverse reaction to wearing this thing.

And I don't have to wait on him hand and foot like I did with the oft-loading shoe. I feel we threw away $150.00 on that darn shoe.

Oh well, hopefully the insurance will cover this contraption. One can only hope.

So hope you are having a good infusion day. Alan has his next infusion on Aug 14.

Be well

Melody

I could propose to ...
 

TEST you all on this, as in a quiz in three days?
Would that do for all?
Good thoughts and pain free moments! - j

Alan's new boot
 

Hi Melody:

That new boot looks like something out of Star Wars! Judging from the curved sole it must sort of "rock" when walked on? I sure hope this helps Alan's wound to finally heal. He has been dealing with that so long. Is it hard to walk on this thing?

Isn't his other shoe called "off" loading? I looked it up on the Internet because didn't get the "oft" loading part. Was that a typo on your part, kiddo? I think in one post you did spell it "off". The "oft" spelling really puzzled me as to how the boot worked to keep pressure off the wound. So sorry you guys had to lay out so much money and then the thing didn't even work for Alan. ARRGH.

Here's hoping this new boot will do the job. Sure looks hot for summer. Would this also be called a "walking cast" for a broken bone?

Shirley H.

They are also used for people with broken tibias so that they can walk and put weight on the bones which is necessary for healing.

Yeah, I'm stupid today. It's an off loading shoe. Guess I'm trying to sound proper!!! lol

Alan is walking just fine with this contraption. It rocks.

Now why it has a rocker bottom, instead of being perfecly flat, well, I have no clue. But it's far and away MUCH superior to that $150 off loading shoe he was wearing. That thing had absolutely no support and when Alan walked into the doctor's office wearing the off loading shoe, I looked down and I said "oh my god, you are leaning all the way to the right, why are you doing that?" and Alan said "I guess I'm just favoring this side so I don't put any weight on the ulcer" and I said 'but there's a little hole where your ulcer is laying right in" Now I don't know why my husband's foot was all the way to the right side. It's like he was walking on the right side of his right foot, so as not to lean on the ulcer.

But with this shoe boot contraption, he walks like a regular person. But the bottom has a curve so it's like a rocker.

Have no clue, but at least he can walk better.

So his appointment is next week. WE are using the regranex (started this morning). You should have seen me take this expensive little tube out of the fridge and take a little dollop and put it on his ulcer, then all kind of gauze sponges and bandages. I'm a regular nurse after 18 months of dressings and saline washes.

Hope all of you are okay.

We are roasting here in NYC.

Melody

Hi Roxie
 

Good luck with the junk going in your veins,and i hope everyone agrees at
work. J. is one of the smartest peeps i've ever meet. And you remember
Mo. heat 107 to go to Drs.is nuts.. Mel that thinky helped Bob a great
deal. There trying to decide whether i Go to ReHab or go for a month
oh Darn..I have 2 Una Boots now from knees to toes,it's to hot for that.
Also surounded by West Niles. :eek: Sue

Been there
 

Mel,
That new boot is what I just got out of. They put me in one of those when I developed the stress fracture in my ankle back before the sacrum fracture. We call them "short leg walkers" here. But it's the very same thing. It's amazing how you can walk in them with a broken ankle or in Alan's case the foot ulcer. They don't let you put weight directly on the floor (on any one spot) at any time. It constantly rocks the foot when walking. The only problem I had was the difference in heel heights from the walker to the shoe on the other foot. It unleveled my pelvic bones and muscles due to the difference in heel heights. I finally bought a pair of shoes that had a heel more the height of the one on the boot. It leveled out my hips better. The other thing I found was that it aggrevated the neuropathy in the heel. Burned really badly. So I got a pair of the memory foam inserts and put one in the boot. Helped a lot.

Hope this boot helps Alan. I've worn one of them off and on for years. Mostly because of ankle and foot breaks.

Billye

Hey all!
It's so good to read what y'all post and know that you are close by! It's like y'all are family members that I love hearing from!!
I had my infusion yesterday and felt really bad last night but today I'm just buzzing and feeling wiped out. I don't feel as bad as I did last Thurs. after my infusion so I'm happy about that!
I haven't heard back from my Principal about my request to work part time for a while. I have my fingers crossed.

Mel, I hope the new boot helps Alan's foot heal up. That must be so miserable for him!

Sue, Please let us know if you are going to rehab or what's going on with you. What all will they do in rehab for you? How's your leg doing? Will you have access to a computer there??

Thanks Roxie. I'll pass on your good thoughts to Alan. Right now, he went out and got on a bus and he's doing some errands. I think this boot thing allows him to walk better and do more stuff. He does not feel any pressure on the ulcer at all. I wonder why his other doctor never did this for him.

I guess I'll never know.

Billye:

Thanks for explaining the rocker thing. I couldn't understand why it wasn't level. Seems to be working just fine.

And this morning was the second day of the regranex. I took off the bandage (as he got up from sleeping), got all my bandages, gauze stuff, etc. and I did what the doctor said. I made a saline solution and cleaned the wound. It's amazing how nice and pink everything looks. He is no longer bleeding. Now he has bled every day for 18 months, just a drop or two, but every morning when he woke up, there would be blood on his sock (soaked through the bandage). This morning everything looked good. Nice and clean.

So I did the regranex thing, bandaged him up and we went out to Dunkin Donuts. Thank god for Dunkin Donuts. At least I get to go someplace. Haven't had a vacation in 15 years and we rarely go anyplace due to finances and depression. But we are getting out of the doldrums one day at a time.

So hope you are feeling spiffy today!!!

Melody

WoW that's fantastic if that new boot makes Alan more mobile! I hate being stuck at home.....and I have been the last few months. I just didn't have the energy to go anywhere. I even dreaded going to the grocery store!
Gosh, Dunkin Donuts sure sounds good to me! I haven't been able to eat goodies like that since my Gastric Bypass surgery in 2004. :(
Guess I'll go rest for a while.........sure feeling that zapped feeling today!

If I told you what we do at Dunkin Donuts, you'll laugh your head off.

I bring two muffins, and we order Coffee. We go upstairs to a little upstairs room and we have it all to ourselves and we drink our coffee and eat muffins. We stay there one hour (in nice air conditioning) and we just talk and laugh.

Nobody bothers us. Sometimes, Alan will order a toasted cimmanon raisin bagel plain (I will have brought some jelly). It's much cheaper.

Yeah, I know, we could stay home and do this but this is Dunkin Donuts coffee we are talking about and air conditioning (we don't have air conditioning in our house, never had (just the bedroom at night).

So to sit in a cool place, drinking the best coffee that we know (they even throw a free flavor in it (I get caramel), and my muffins. Well, it's a little piece of cool heaven.

Alan even forgets about his PN for a while.

And I don't even notice my burning anymore because since I'm on the methyl b-12 (5000 every morning when I get up), well, I think I'm getting better.

So we take one day at a time.

Believe me, there's a lot of other people in so much more bad shape and I don't mean pain wise. My friend lives around the corner and she lost her son on 911. Then two weeks ago, her nephew killed himself, and this morning she told me that her sister-in-law (this was 10 years ago), well, she was coming home on a train and her husband and 4 kids were driving up to the train to meet the mom.

Well the train is stuck on the tracks and everybody was wondering why. Turned out the car with the dad and 4 kids were struck from behind. I don't have to tell you what happened. A woman lost a husband and 4 kids that day.

So if I have a bad day and I start saying "oh me oh my, why does this hurt, (and I'm not being unfeeling about anybody's PN, I know what Alan has gone through), but when you have such stress in your life (like what these people go through), well, I try and de-stress my surroundings as much as I can. For Alan too. His PN is much better if we laugh and we don't dwell on our son.

Sometimes you have to put yourself first. I've learned that I have to do this.

So, my dear Foxy Roxie (that's your new nickname), you keep on truckin.

Melody

Something else to remember is that laws vary from state to state. What a nurse is allowed or can do in one is not allowed in another. And the different types or brands may require different handling. The bottom line is there is really no standard for some things from one place to another. It can even be simply because of the doctor's preference, pre-mixed versus must-be-mixed forms.

roxie
 

may i know what the IVIG is doing for you? is it for neuropathy pain?
thanks steff

HI Steff!
The IVIG is working for me and I'm tickled pink! I just had my 5th infusion yesterday......I have them at home now......and I've been going 16 hrs with out pain. The 2 days after the infusion has been very hard on me.......as it's working......but it's well worth it to feel better over all!
I have Chronic Axonal Neuropathy....an autoimmune Neuropathy. I've been very lucky that my insurance is covering the whole cost for me. I've been having MANY tests and then the nerve/muscle biopsy so I've covered all my copays and coinsurance costs already this year.
If you are thinking about IVIG I hope it works as well for you!

Ivig/roxie
 

I think i already posted this but i am not sure how to do all this-
how did you get a doc to give you the ivig-does it help with inflamed nerve pain?
i had these years ago when i didnt have the pain, for another reason and i felt just like you wiped out. if i thought they would help my pain i will cry for joy. please let me know if it helps nerve pain and all the info-
if it does thanks
steff