Wednesday, August 11, 2010

Common Variable Immunodeficiency IVIG

 Once every four weeks added to my life will be infusions.
This I am told is to be just looked at as such. An addition to my life. It does not have to take over my life. So as a gift for the greater community at large a window into the process will be opened up to give encouragement to those newly diagnosed that it is not so horrible a thing to experience.

This was a post of my very first infusion. I was scared and did not know what to expect. 

This post has been modified
It is my effort to inform and support. 
To encourage others. 
I found NO such information when I was to face this the first time.
I was scared but after the 4th time it is now routine.
My arm is readied for the needle by using a numbing agent that takes a good hour before use to work. This did not work for me for due to my tolerance to analgesics it is hindered.
by setting up the table before my nurse gets here the process was expedited.
Last month my other arm was used so we have to use different veins each month in order to keep my veins from scaring. The pump in forefront, all these supplies are sent to me overnight. My infusion is mixed by the pharmacist for I am low in IgA a subcategory that is a bit more involved

Before we begin we both wash with surgical soap to keep a very clean process. I am subject to weakness with bacteria. This a precautionary procedure.
After the vein is found the process begins. I am blessed with a nurse who is a specialist at IV. This is her line of work and only IV so she is really good at it.
Now turn your eyes if you need to.
Being allergic to latex we have a special glove, band and all else.
On my little cart I purchased is a pan to use if needed.
In the cart will be kept the supplies at her ready. I set this up with ease of use in mind. At the end of process it is kept in my bedroom closet.

Flush is done over and over throughout the process. Once established the flush is done then she draws up the anti nausea medication and injects it into a flush syringe. This keeps the med at a slow rate and keeps it from burning. Tell them you want it done this way. She tells me they don't all practice this. 
The anti nausea med is the one that hits me like a truck and gets me real sleepy real fast. Benadryl and Tylenol is also given to me 30 minutes before the process begins. I am trying to avoid the Benadryl for it knocks me out as well.

Yes it hurts but only for 10 seconds or so

It bled a bit this time. She knows she hit a good vein

Then first flush, then another with the nausea med

This is done slowly

The infusion is the large bag, flush is the syringe see the tree set out many many will be used in the process. The line is set through the pump at a VERY slow rate. Six hours to go.

Note the crackers. The medication for nausea makes me well...a little nauseous at first.
The stress does it too.
Once the flush is set the infusion begins. NOW every time the anti N. meds go in the infusion stops first flushed then meds then flushed then the infusion restarts. Do not let them do other wise it can scar your veins.

I am allergic to latex and this sock is a wonderful tool.
I am able to rest, walk to the bathroom and generally use the arm lightly.
Sleep however is the calling at this point.

My blood pressure is checked over and over. That is not the accurate measure it was in process here

By now it's all good.
Due to my low sub category of IgA I am watched carefully for Anaphylaxis (a life-threatening type of allergic reaction). The concern is alleviated by a kit on site so I am covered. Not all CVIG patients need be concerned of this at all.
So I sleep and go to the bathroom. every so often given more nausea medication that makes me sleep some more. My face=no glasses.

Sleep more and I also spent time in my own bed too.

Eventually the pump indicates that the bag is empty

All the stuff is removed.
We use a latex free bandage on my arm.

The IV is not a needle left in, it is a little silicone tube in the vein.
The needle just inserts it. 
Hence the original discomfort.
Once it is in the arm is safe to move gently around.

click all images to enlarge

So I hope that this knowledge helps remove any fears you might have about your infusions.
Once it is done and the nausea meds wear off life is good.
Sleepy for the rest of the day and a bit lethargic by the day after just try and hold me down.
This is a real lease on a healthy life.

Post Script to Anonymous response.
The effects of the anti-nausea meds are better now. The dosage is being gradually lowered. The benadryl is being reduces as well. It is not my intention to hinder anyone.


Susie said...

What an ordeal!


My wife says I'm a big sissy when it comes to doctors and medical stuff. I had to scroll through your photos real fast. I am the faint hearted!

I hope and pray you feel better


Beth said...

WOW, you are one strong woman. Hope you feel better soon.

Dena E's Blog said...

I will surely send up prayers for you...Thanks for the note to my blog on JESUS...Not many go there..
You have a huge thing to deal with ..Perhaps you mentioned it in the post but how long will you need to do this????
Will it just continue????
A bit nosey huh...Keep on SMILIN with our Sweet Lord holding you all the way in HIS Mighty Arms!!!
Blessings and Hugs Dena

My 1st husband had SLE and we went through soooooo much together..
So I can relate a bit

Amrita said...

Oh dear that was something Donetta, a lot to go through. Hope you are recovering well you are such a busy mom and homemaker. Take it essy.

Good to read that school is going well with Dash and Dove.

Donetta said...

Thank you every one

Dena this is for the rest of my life.
Every four weeks.

Denise said...

Wish I could be there with you sis.

Anonymous said...

What an ordeal you have made of this - I to have cvid and you have just strung this out big time, I am sure if you point was to make people relaxed about this u have done the complete opposite, CVID is no big deal at all so don't try and make such a deal!!

Donetta said...

Dear Anonymous
Hidden in the dark your words are shadowed.
However now that I have had my 4th infusion the fear, dread have dissipated. It was scary the first couple of times. Yes, IT WAS A BIG DEAL TO ME at the time.
Glad that you too have found it to not be a BIG DEAL any more.
Dang you sure have a way with words. Peace be with you.

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