Friday, July 18, 2014

IVIG and Me

For the most part, I am a fairly private person, I share but I try to limit or filter.  I have written about my treatments, and to an extent about my chronic fairly rare disease.
But, tonight because I call this blog Transformation Information I think it is time to share a little more.

I know that many of you deal with rare diseases and chronic illness and like me, people look at you and talk about how great you look and that you don't look sick........even when you feel like crap.  I know that many of you like me, have searched for answers......sometimes you find them, sometimes you don't.  All I can tell you is keep searching.

I started IVIG monthly treatments two and a half years ago.......immediately I began to have new symptoms.......each time I spoke with my doctors about the new symptoms, they assumed that something new must be wrong, though I kept telling them I didn't have the symptoms until my treatments were started.  I had MRI, a CT scan, blood work, x-rays.....all showed nothing.

After awhile, I had done much research on IVIG and found that around 5% of people who receive long term treatments have issues or side effects with them.  All the information I found suggested slowing the drip, taking nsaids, and antihistamines and drinking lots of water.
So, I told the docs what I had read, we slowed the drip........sometimes the side effects lessened, or weakened and for a couple of times totally disappeared.  But the past few months, they have come back with a vengeance.......and this month has been the worst.

In the meantime, my original doctor that I love, had moved to a new hospital.  So I ended up with a new doctor.When I first saw him, it was soon after the drip had been slowed down for the third time and it seemed that maybe the symptoms were fading.   I saw him again Monday, as I sat and ran down the list of symptoms, he looked at me and said serum sickness..... I looked at him, and he said it again......serum sickness.  It seemed that because of my size (ok, I admit, I am kinda small)  it's possible that the  two bottles I had been getting each month were too much .  It is interesting, because each time that symptoms hit hard, I would tell Rick it seemed as though my body was trying to rid itself of the drip.

So starting with my August treatment, instead of two bottles, I get one.   I came home and began my internet search as always........when I found articles about serum sickness with IVIG,
I had every symptom.  So here is where the Transformation Information comes in......if you have a rare disease.......educate yourself, listen to your body, be persistent.   Doctors are humans, and remember humans are not perfect.......though we wish they were when it comes to our health.   I know many health care professionals, they know very little about my disease or IVIG treatment.  Rick and I have learned that we have as much responsibility for my health care as anyone, well actually more.

Doctors and health care workers deal with the masses and the most common diseases are the ones that get the funding, the education and the research.  If you have a rare disease......educate yourself and your caregivers, become aware of what takes place in your body, listen to your body, and be persistent.
I have been told that I will need IVIG treatments the rest of my life.  I am grateful that because of the treatments the lung infections that have plagued me for many years have if we can just stop the dizziness, the nausea and vomiting, the headaches, the fever, the chills......keep your fingers crossed.

1 comment:

  1. It is important to keep up on your own health issues and never be afraid to bring anything up for your doctors to review. I always find it interesting when a new doc arrives and sees what others haven't..sort of like a fresh outlook I guess. So don't be afraid to give info or say something to your pay him, not the other way around! I'm so glad they are finding the right dose for your care and I so hope it works better with less side effects. Fingers crossed here!