responses!

No problem at all!

I am flexible as long as I infuse three times during the week I can adjust. They told me I could do MWF and take off the weekend or whatever works. I have done that already based on activities which is something I have never been able to do. First being tied to the infusion center then to a home health nurse.

They said I could have irritation around the infusion site – like a red rash. One time I did and then I realized it was the small bandaid I was using. I changed to the sensitive skin type and now nothing. On a few of the needle sites when I remove the needle which is only about a half inch and tiny gauge – I get a drop or two of plasma and maybe a pin drop of blood. Some I don’t even have to cover.

Nothing like the huge needle marks and central line scares on my chest from so many years of infusions. I have had a port for about 6 or 7 years.

I have done the infusions in the morning and at night – whatever works best. I thought I would take a nap during – but it goes to quick. When I pull out the needles I put away trash and sharps and go on with life. I don’t feel like curling up and sleeping. No pre-meds at all – no tylenol or benedryl. I can pick my sites as well. They said that some patients like reusing and some like rotating it was completely up to me.

I have a layer of “fluff” from so many years of steriods. About 200 pounds at 5′ 4″ – so I do have enough skin and fat to pinch each site which helps.

I have done both sides of my stomach. I prefer the lower portion of my stomach. I have done inner thighs. Last week I got brave and did my upper arm – towards the back. I really like that site but a little tricky to put in the needles and get the plastic tagaderm covers with one hand! You can also do your hips and back if you have help.

These are vein infusions – so they are sites where you have enough tissue. Each infusion site absorbs what looks like to me size of an egg in diameter. The skin just looks a little dimply like you have cellulite. But the next day it is all smoothed out. I think I am going to use some Vitamin e oil to keep my skin healthy. I started using that after so many nerve surgeries to keep scares soft and it really works well.

I will do an infusion tomorrow and will post a few pictures. Mayo and my neuro never recommended either. I happen to read in the IG Magazine and kept following the research. I deal with Coram which is a national pharmacy that helps patients with home health. I talked with my pharmacist – in Minnesota and he worked with my doctor and insurance company to get everything approved! He had done the research on the efficacy of the treatments for long term improvement and reduced side effects. If I wasn’t married – I swear I would marry this guy for changing my life!! My neuro is really good – Mayo trained and very on top of CIDP – but I think once you get on a general maintenance program that you really have to be proactive on your own care!