weird...lately my eyes have been playing tricks on me. I'm not really dyslexic or anything like that, but I've been noticing that I've been misreading a lot of things for the past few weeks (maybe a little longer). It's really annoying and strange.

Well, well, you have joined my eye ball club. LOL

You'll be okay.

my doc said it was better to be dx when i was because so many are when they are hooked up to a breathing machince in the hospital. the iv is not horrible been thru MUCH worse over the yrs. i have a port which helps, my veins are not great so the port it much more comfortable. i am elem teacher, i leave work early every 3 wks to go to infusion. it is do-able, just not pleasant, but it could be worse. my 23 yr daughter is full time student on track and cycyling scholarship graduating in may with biol, chem, lab sci, and pre med she will go to Pharm school so it is do-able. she has a very upbeat outlook and doesnt let anything stop her. i admire her determination! so it is do-able.

Peconville,
Unless you like leaving work early, why don't do you IV's at home. I've been having them at home every month for over 25 years and can't imagine having to go to an infusion suite or hospital every three-four weeks.
My CVID daughter will start the University of Penn in the fall. She is spending this year in Boston participating in City Year, a part of AmeriCorps. She is volunteering in an inner city elementary school with 1400 k-6 graders doing tutoring and mentoring. My 21 year old son who also has CVID was student government president of his college last year and will spend spring break in Israel doing community service, everything from picking turnips to working in a food kitchen.
I think I'm like you . . .I was to come back as my kids in my next life.

Puffing Chest

i did not know it could be done at home. i wonder if it is an insurance thing??? i may ck into it. although it would gross my family out to have to see needles, we are all a bit needle shy in our house! my sister and her 3 small children live with my husband and i and we are all pretty needle shy! my daughter with cvid passes out when they take her blood. i decided it was just something else to laugh about ........the people with a blood related disease are blood phobic!!!

Normally if you do IVIG at home, the following happens.
First, you must be viewed as very stable while getting IVIG at a facility.

After the nurse sets up the IV and it is running fine.

You must have another adult there the entire time who will check in with you frequently to be sure there is not a problem developing.

When your treatment is finished the nurse returns to remove the IV and all the things she/he does when the infusion is completed.

There are pro's and cons.

If you can relax and not have chores to do and children bouncing around that's great.

Since I don't feel good when I am receiving the infusion and I need to sleep as much as possible when I'm getting the infusion AND the nurses wait on the patients AND they give the patients their meal and snacks; for me the Infusion Center is a better place to receive treatment.

Most often this does not happen with most family dynamics.

If you feel pretty good during your treatment and have some things pre-cooked or just have something you can nuke or a sandwich; it will work out well. This is as long as someone is available to be with you the entire time. That person is not supposed to leave at any given time.

This is what I was told when I was considering doing this at home.

I don't think you understand how most home infusion protocols are written. I know of no agency in the Cleveland area that does "stick and runs."

I think what you are talking about is when a nurse starts the IV
and leaves. I know in Cleveland and in most (not all) place I've heard about, that is considered poor practice, bordering on malpractice. My nurse, who owns the agency, would never consider a "stick and run" procedure. All her agency does is home infusion care. She contracts with all of the major specialty pharmacies.

She has one patient who takes 26 hours to infuse and she spends the night at her house -- every month.

I feel I get more attention at home than I would at a hospital.

Mark,
All I can tell you is this is what I was told by the first company I worked with. They told me that the nurse leaves and then comes back. I'm not saying this is a wise practice.

In the past, I did home IV therapy for antibiotics and/or steroids.
Some were central lines, midlines and 6 inch catheters in my arm.
Once this was setup, I started and ended all of my IV meds.
One set up had a pump that ran on batteries.

Anyway, this was my experience with other medications and did fine.

I have not done the IVIG at home.

I used to have ivig at home, and they would put a pump on me with a fanny pack, and I actually would run errands!! If the pumpstopped, I would call the nurse and they would tell me how to reset it. My infusion would be 5 hours.

Stimpy,
After 300 infusions that is something I would be scared to do. 99.99999% of the time I'm sure that would work perfectly. However the one time you had an allergic reaction and passed out, who would call 911. I think whoever started your IV and let you do that would be in BIG legal trouble. I've had a total of one reaction to an infusion, We'll never know if it was the meds or my body's fault, but I can happen.

Yeah, it was kinda crazy, but for a total of about 6 months I had it that way. When I first started, I had private home care RN with me all day. And God I don't know about anybody else but the pump was always going off, beeping, at least 10 times, sometimes the nurse would get so frustrated they would just let it hang freestyle. I guess the medicine was thick. Then I had Kaiser Permenante, they overall are the best, they have an infusion center, excellent doctors, WHO ACTUALLY KNOWS WHAT CVIDS is. Always measured my levels, so they knew what they were. Could always talk to the doctor by phone and describe any symptons that were starting, and she would tell me what to do. The greatest. I have medi/medi now and I have an oncologist, who is nice, but he has no idea, as long as I get my meds its cool, off this morning to get infusion. Just to let you know I have been receiving infusions for 15 years off and on. (when i had/did not have health insurance)

Hey Stimpy,

I hope you're infusion goes well and you feel good after! I'm finally starting to feel better after mine on Friday :)

Hey Stimpy,

I hope you're infusion goes well and you feel good after! I'm finally starting to feel better after mine on Friday :)

Hi Stimp,
Well, I'll bet that felt like true freedom even if it wasn't really a safe idea. :)

Do your infusions usually go well for you?

Are you our blessed princes?

How did it go anyway?
I hope it was a good day.