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Margaret

IVIg Infusions

31 posts in this topic

Hi Margaret,

I'm glad to read that Gareth's first IV infusion went as well as it did, save the drop in BP. It's too bad when it has to take so long, yet each person is different on how their body accepts the speed of such things, be it dialysis, infusions or the like.

 

appreciate your keeping us posted! Hope he continues to do well with his infusions.

 

 

Good tip about head back rather than between knees, miocean! Thanks!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Margaret,

 

I'm delighted to hear that Gareth's first IVIg infusion went well. The subcutaneous infusions with a pump sure sound interesting.

 

I don't know about you, but sometimes I'm pretty amazed by what they expect us to do at home, with no medical background at all to draw upon. I had to give Gene all sorts of shots at home, after his lung transplant. They gave me about five minutes of instruction (tops) in how to give shots in the arm, in the stomach, etc. I'd have to think they get more than that in medical school? But no, they cut me loose with my victim/husband, entrusted me with a lifetime supply of syringes and drugs I couldn 't even pronounce let alone tell apart, and I merrily proceeded to give our dining room tablecloth so much heparin that it will never suffer from a blood clot, as long as it lives.

 

I sure hope you pick up on things faster than I do and that your victim/son isn't as dismayed by your learning curve as my victim/husband was.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Everyone,

 

Well, today Dad and Mom learned how to do subQ Ig infusions. :emoticons-clap: The nurse walked us through the prepping and put in the first needle. Dad did the second one with no problem. Me.......well......I just looked at that needle (1/2" long) and said "I can't do this." :unsure: They are very fine needles, go straight in all the way, and Gareth said they didn't hurt going in......but.....I just couldn't stick him. Not today, anyways.....maybe next week !!! It took about 1 1/2 hrs for the 50 cc's of fluid to go in the 3 needles and there was no major drop in BP this time. As of this evening, he's had no headache or other side affects.

 

Janey......the nurse told me today that many insurance companies won't pay for weekly infusions because they are *more expensive*. I find that hard to believe since the individual is expected to do them on their own (after a 4 wk learning session) and in their home environment. I suppose the monthly IV's are done in a clinic or hospital setting with a nurse....right? :emoticon-dont-know:

 

Also......Gareth saw his old Rheumatologist, from 2 years ago, on Thurs. He made a fine entrance.....when they called him to go back to the examining room, he stood up, walked two feet, and promptly crashed down. :excl: His BP dropped too fast and they came rushing with the wheelchair. doctor said he does not have Raynauld's if it is his hands and feet turning completely white, then red. That is from the vaso vaso constriction and OH. So.....I get to take that off his list of medical issues. :VeryHappy: She said R's is red, white, and blue....you need all three colors in the fingers and/or toes.

 

You guys are great....thanks for being here!!! :thank-you:

 

Take care, Everyone.

Margaret

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Hi Margaret,

 

Thanks for letting us know about Gareth's subQ Ig infusion.

 

It must be difficult inserting the needle into someone else; I've had to inject myself and I've injected the horses and dogs on various occasions, but I've never actually injected another human!! It must be much worse putting a needle in another person than in yourself, although I have no fear of needles or injections (just as well with the number of blood tests I've had....the human dartboard!! ;))

 

Poor Gareth; I hope he's recovered from his crashing faint now. I'm so pleased to hear that he didn't seem to suffer any side effects from the infusion and I do hope that it is as successful next time and that they do help him a lot.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Everyone,

 

I did it....I stuck my kid!!! :lol: Gareth never even flinched -- he just looked at me like I was nuts!!! :rolleyes: Like last week, it took 1 1/2 hrs and he did just fine. The nurse will come next week, and then, we're on our own. He saw the Immunologist today, too, and he said it will take almost 6 weeks for the body to build up immunity. He will have blood work done at that time to see if his levels of IgG have risen. I'll keep you all posted.

 

:thank-you-2:

Margaret

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Hi Margaret,

 

I'm delighted that you finally managed to mercilessly mercifully stab poke Gareth so that he could get his at-home infusion! I know how much nerve that takes. I was beside myself when I first had to give shots to Gene. It would have been so much easier to give a shot to a stranger, as its so hard to hurt the one you love. Oh, sorry about that old slogan but that's the emotional challenge of it, isn't it? I'm glad for Gareth that it didn't hurt, too.

 

Have you done it a second time yet? I'm enormously proud of you for blasting past the fear zone and taking on the challenge!

 

:you-rock: :emoticons-yes:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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