First Home Infusion
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January 30, 2009 at 8:12 pm
Hi-Forum-
I Just got finished with my first home infusion of IVIG Gamunex. I Like my nurse. She has been doing it for 16 years and was very pleasant. She said I was her longest day.It was Two days of 85 grams per day. that took 9.5 hrs each day. What a long 2 days. Glad its over.
I am gonna take the benadryl tonight and tomorrow just to be on the safe side. It was alot in a short period of time. Now if just I avoid the headache and nausea, I’ll be a happy camper. Have a great weekend!:)
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January 31, 2009 at 2:39 pm
Kevie finished yesterday too! Hopefully his headache won’t be too bad either.:o
Good luck!
Dawn -
January 31, 2009 at 2:40 pm
No headache Yet, No Nausea. Went out for Morning Photo shoot as sunrise.
this is what I got.
[IMG]http://i386.photobucket.com/albums/oo309/tjr1080/DSC_0084_4040.jpg[/IMG]Mallard Mania
[IMG]http://i386.photobucket.com/albums/oo309/tjr1080/DSC_0150_4106.jpg[/IMG] -
January 31, 2009 at 4:28 pm
Nice Photo Time also glad you don’t have any side effects from yesterday.
Sue
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February 1, 2009 at 9:26 am
What an enchanting photo Tim. So glad you felt up to going out. I really hope that headache stays away. Keep on enjoying.
Linda -
February 2, 2009 at 7:50 am
Yikes, that is alot in two days. I’m glad you are doing ok. Very pretty picture that you took.
I had mine last week but not noticing an improvement this time. I know it has to be stress…my oldest sister pushed my stress level up to the highest it can go.
Take care of yourself…
Stacey
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February 2, 2009 at 9:03 am
Hi Tim lovely pictures and I hope that everything goes well:p
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February 2, 2009 at 11:32 am
Glad it went well. I’ve been receiving home infusions about every ten days since last fall. Now starting to have a problem finding a working vein. Took the nurse six tries last time around. Anyone have any suggestions for toning and conditioning hard to locate veins?
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February 2, 2009 at 2:38 pm
Hi Lostin gotham. The easiest foolproof thing to do would be to get a port. Every ten days is often and your veins sound like they are telling you they are tired. When we used to try to get Kevies veins, we did the warm relaxing shower right before, the nurse would call and give an eta, then once she was at our home and set up, Kevies got out of the shower and they tried immediateley. War/hot paks on the site as well. pumping motion, etc. Butterfly needle in the hand. The problem was, is that the smaller veins only lasted a day if that. Since we had the port put in, things are much easier, but we did have a few minor issues in the beginning. They can last 4-6 years. Good luck.
Dawn Kevies mom -
February 2, 2009 at 7:30 pm
Wow, the vein thing.
I noticed that both times I got infusions that the vein pretty much disappears. that is weird. I have these two big ones that usually run down from my elbow to my wrist. Since infusions, there gone.
I do know that if you work muscle into the arms the veins are more visible. when I was lifting alot. they come out all over. the lower the body fat, the more visible the vein. usuallly. I am starting the routines back up to increase circulation, lower the BMI and bring the veins up to the top. Like Dawn said though at some point, the port will be the way to go.–tim–
I got lucky this time no headache no nausea. Its Tuesday, I should be in the clear I hope, KNock on wood. KNock KNock! LOL
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February 2, 2009 at 7:30 pm
Wow, the vein thing.
I noticed that both times I got infusions that the vein pretty much disappears. that is weird. I have these two big ones that usually run down from my elbow to my wrist. Since infusions, there gone.
I do know that if you work muscle into the arms the veins are more visible. when I was lifting alot. they come out all over. the lower the body fat, the more visible the vein. usuallly. I am starting the routines back up to increase circulation, lower the BMI and bring the veins up to the top. Like Dawn said though at some point, the port will be the way to go.–tim–
I got lucky this time no headache no nausea. Its Tuesday, I should be in the clear I hope, KNock on wood. KNock KNock! LOL
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February 3, 2009 at 8:35 am
Wow, 9.5 hours. I have been getting 55 g in ~ 2 hours. I can’t imagine over 9 hours.
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February 3, 2009 at 8:38 am
I was getting 25 grams a day for 5 days a total of 125 grams. It took about 2 1/2 hours for them to get 25 grams inside of me.
Sue
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February 3, 2009 at 9:07 am
Kevie gets 30g over 5 hours and 40 minutes. Unfortunateley, he did get his usual headache this morning, 4 days post treatment. Does anyone else get headaches so far past the last day?
Dawn Kevies mom -
February 3, 2009 at 9:29 am
Hey guys.
Dawn. I dont think it’s odd to get the headache four days post. I am odd with my reaction, too…I get the RASH and it’s usually at least 7 days. This time, I got it right away and real bad but only on my back and legs. Usually it’s my chest that is the worst. It’s still pretty bad actually.
I have bad news to report. I didnt get the reaction like I did before. No increased energy , not able to walk up the stairs without holding on…and if anything, I feel worse.
I think it’s personal tho and I’m
NOT giving up.Tim, as for the veins…if I dont hydrate, my veins will roll or disappear and she has to poke me a few times. Sometimes even a good vein will not work out. If I drink plenty…non alcholic drinks :p …preferably water, I do fine.
Maybe one good thing to report. I didnt feel my iv pokes in my hand at all…until this last infusion….OUCH. I’d almost rather not feel that ! 😮
I’m so glad you are doing so well Tim !
Stacey
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February 3, 2009 at 7:24 pm
Yeah,
Everyone is different. You hear of all different rates for different folks. they would probably go faster, but headaches are the issue. at least the first time.
We went at a rate of 25 for 15min, then 50, then 75 then 100 for the rest. til we sucked it all down it took forever. She drained all the bottles into an IV bag and got every drop out. didn’t waste a spec. script was 85gr a day but I bet I got like 90.I think I ran a good 45 minutes past the pump setting of 850. so either I got extra or the pump is inaccurate. either way, I want every drop. Done Fri nite.
Dawn, I defineately am prone to headache after its done. I drink and drink, take lots of benadryl etc. then when I start coming off the pre and post meds here it comes. Like Sunday we sat down for the Superbowl with friends.
I drank one beer and LOOK OUT. wound up switching back to water, took an IBU and tylenol w/cod and it went away and never came back. the stuff in there and it probably takes a few days for the viscosity to mellow out or something. What is Kevins max 75? for it to take that time.Both times I infused, about 4 days after, i get the achey chill/sensitivity all over. Very similar to the random sensations I would feel pre remission.
I believe that is a heal sign. Most may call it flu like symptom or I don’t know really. I call it a body chilll The first time was worse than my second. Still making ongoing improvements. I am very happy. thanks guys and gals.–tim– -
February 3, 2009 at 10:53 pm
[quote=TJRPT6]What is Kevins max 75? for it to take that time.[/quote]
Assuming a 10% solution, which would produce a total of 300 ml to be infused, the average rate would need to be just a shade over 50 ml/hr.
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February 4, 2009 at 9:35 am
50 is our max. Funny thing, this is one time gaining weight has a benefit. The formula is figured by weight, so I guess is you want to speed things up, bring on the BLT’s and milkshakes!! Boy, I could probably infuse in 20 minutes!!!!
Dawn:D -
February 5, 2009 at 3:51 pm
[SIZE=”4″]Please take my advise & keep moving. I couldn’t because I was in a wheelchair at the time. 2 days after my last of 5 treatments, I developped blood clots in my right leg. Some broke away & landed in my lungs. Now I have a Greeenfiield filter in me & I’ll be taking Warferin(rat poison) for the rest of my life. IVIG did nothing for me but BAD!!! Believe me,I’m thrilled its working for you.Anything to get thru the day with ease is great.[/SIZE]
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February 5, 2009 at 7:00 pm
Hi Mike,
Thanks for the advise. I have read several of your posts. I understand you have had a negative experience with IVIG. I understand and hope things get better for you. The Biggest Infusion risk is stroke. A clot is that about to happen. I was willing to take the chance as many are. evertime we infuse it can happen. I am willing to take the chance.
I walked around alot when I got the infusion especially at home. You offer good advise. Like when the hospial puts those things on that puff up so you don’t develop a clot. I believe we are especially prone once foot drop occurs because the muscles cant help pump the blood around right?
My Friend (Chief of Police in our Borough) had a clot in his lung just popped up. he didn’t take anything and it happened. He couldn’t breathe, almost died.
He now takes Cumadin for the rest of his life. I don’t think they put a filter in there. He is OK but clot prone. Try not to think of it as rat poison. its blood thinner. Rats die due to overdose of blood thinner and bleed internally. So due humans from Nsaid, or whatever.I am glad the steroid are working for you as I have read in another post. your actually lucky. See ya Mike.–tim–
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February 11, 2009 at 9:10 pm
[SIZE=”4″]Thanks Tim & good luck.[/SIZE]
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