My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Friday, July 31, 2009

Flashback Friday ~ IVIg Infusions

A message from mom: Yesterday Sarah told you about her perfect visit with the doctor. Her medical history has not always been like that. Far from it. Actually I have waited twenty years to hear the doctor say the word "perfect" when referring to her health. And what an incredibly amazing feeling it was. A miracle, truthfully. Such a wonderful birthday gift as we are about to celebrate twenty years...TWO decades of LIFE. What a blessing we have been given.

We have been getting lots of questions lately about the IVIg infusions she used to get, so I thought this would be a good time to let Sarah tell you about it.

Here I am checking in at the front desk with my $5.00 copay. I was like a celebrity at Kaiser. Everybody knew me.

Nurse Barb came out to get me. She always asked me, "Which arm today Sarah." Looks like today I want my left arm.

This is my chart. Look how fat it is. It starts with my recovery from my VSD repair when I was a baby. Then all my hospital stays for RSV, Pneumonia and other respiratory things. It probably has lots of notes about my trach too. But today I am here because I was diagnosed with an immune deficiency disorder which means my body was not making antibodies and you need those to fight infections. I was very, very sick and I was missing so many days of school. Some of the doctors said there was nothing left to do, but Dr. N had an idea.

So I started getting monthly infusions of IVIg also known as human immunuglobulin. Nurse Barb would have everything set up before I got there.

Before they started the infusion, they would take my blood pressure...

...and Dr. N would check me out. If I was sick that day they could not do it.

Haaa, Dr. N let me listen to his heart before we got started.

OUCH!!! I hate the part when the needle goes in. And my left arm was no good today, so I had to get it in my right arm.

I always sat on my moms lap during that part and she would make me feel better.

Then I had to sit and wait. Every twenty minutes they would take my blood pressure...

...and my temperature to make sure I was not having a bad reaction to it.

After about one hour it was time to change to the second bottle. Can you believe it takes several thousand donors to make that little tiny bottle and it costs about $3,000.

Each visit took about four hours. I would get bored. So I would find things to do like read books, sing songs and play with the arm band.

Oh I hate this part too. Nurse Barb has to take the tape off and get rid of the IV line.

Finally, it is almost time to go home. Just one more blood pressure check.

Stickers!!! I love picking out stickers.

One last stop at the pharmacy to pick up some special medicine to numb my arm for next time. "See ya next month," I would say.
Summary by mom: Did it work? I get asked that question a lot. The fact is, Sarah was at times on the brink of death. She was no longer responding to antibiotics and her lungs were in very bad shape. She certainly improved during the two years she was receiving it and when the FDA recalled the product due to a contamination and she was no longer able to get it, she deteriorated rapidly. So I would have to conclude that it certainly helped. We did not see any side effects other than her poor arm being so sore following treatment, so we tried to alternate arms if her veins cooperated. I certainly never thought as I sat with my arms and legs tightly wrapped around her as they stuck her arm each month, that ten years later I would hear "perfect" to describe her health. If IVIg helped us get to that day I would do it again, in a heartbeat.


Denise said...

Sarah, you are so lucky that your mom took so many pictures to help you remember all that you have been through. I can't get over how cute you are!! Glad you are "perfect" now!!

Mel said...

Hi Sarah, what a trooper you were- so very brave. And you too mom. Looks like it paid off in the end- what an amazing young woman you have become.

Molly C said...

I'm pretty certain IVIG saved my brothers life. Or at least changed it for the better

ABandCsMom said...

Wow Sarah, your mom sure did take a lot of pictures. Good thing, I like pictures with stories!
Thanks for posting this. There has been some talk of using IVIg with Carly. I had no clue what it was all about. This was a very informative post.
Very happy IVIg worked so well. You're one amazing gal Sarah.

Karen said...

Sarah, you're such a trooper! I have a hard time sitting quietly when needles are involved and look at how good you were!

Cammie Heflin said...

I am so glad that you got such great news and her health is so improved from when she was younger. Sarah you are so lucky to have such an awesome mom to care for you!

Dream Believer said...

This is such great news! I give Johnny his IgG every week at home now and it's much nicer than the hours spent in the hospital for the IVIG like last year when he started it.

It has helped him stay out of the hospital and brought him back from the brink of death as well. I really look forward to him getting a perfect bill of health from a doctor one day too!

Thanks for the encouragement and so glad to see you have grown into such a wonderful, healthy, and amazing young woman Sarah!

JRS said...

You both amaze me with your strength and courage.