Are you a bleeder???

Seeing as this week is my IVIG infusion week I thought I'd do a little post to explain what IVIG is, how it has been helping me & what you can do to help.

Since becoming aware of my extremely rare Autoimmune Dysautonomia diagnosis (AAG) I am undergoing regular blood transfusions of plasma and antibodies to fix my messed up body. This treatment started at the beginning of this year and has made huge advances in my recovery process, which has been exciting and positive.
I remain on a huge amount of tablets daily to control all the different systems that have been affected by the whole Dysautonomia both POTS & AAG. With both the medications and the blood I am in a seemingly good place at the moment which is pretty uncommon in my world. It has been a real blessing to have access to this most appropriate treatment that could get me further to better management than ever before.
The effectiveness of IVIG for me is very clear. If I look at my previous hospital admission or the times when I have had the exact same infection which had put me into a flare, based on previous experience I should and would be still in hospital. This latest admission of early 2014 had a predicted discharge date of no earlier than end of October 2014 at best. This prediction was made based on how sick I had been and how quickly I usually return to my basic level of function. But something different happened, this time I got home at the beginning of August and my team & I attribute that to the extra treatment of IVIG. My team of doctors have noticed the rapid increase in improvement and have decided I will continue to receive IVIG and high volume IV Fluids monthly until I am walking independently and unaided (no no walkers or wheelchairs etc) or if I am to stop responding well to the treatment other options will be explored. YAY!!!

The thing with IVIG is that it is super dooper EXPENSIVE. Due to it's shortage of supply via donors it makes plasma and antibodies both hard to attain and extremely hard to meet the qualifying criteria. Due to my condition being super rare (literally 1 in 1 million people) it is not on the qualifying list and seemingly impossible to be approved for by the Blood Authority of Australia. This was a huge hurdle in my mind when the treatment option was first discussed. Luckily for me I have a wonderful team of doctors who believe in me and have seen my struggles first hand so are willing to go above
and beyond & present their evidence and knowledge for me. It was with the help of a head of department at my treating hospital coming on board and willing to support my primary team to get IVIG that made this wish a reality. He took my case to the hospital board and they decided in favour of supporting my IVIG.
I literally cried. A lot. And then I felt grateful.
So blessed to have a medical team who fight for me & are patient advocates, I know this is sadly not the case for everyone.

In a quick description, basically IVIG stands for intravenous immunoglobulin and is a combination of plasma and antibodies from healthy blood donors administered via a vein. It is reported that it takes over 1000 blood donors to make one portion of IVIG, hence it's challenges in both obtaining enough and ensuring the blood product is only being used for specific purposes.

So here's a fact sheet about IVIG http://resources.transfusion.com.au/utils/getdownloaditem/collection/p16691coll1/id/236/filename/251.pdf/mapsto/pdf

I don't normally do 'preaching' posts but if I could educate one more person on my illness and the treatment I need to help get my life back on track I will.
Normally, all I ask of my kind readers is to enjoy my writings and join me on my journey to better health but today I am asking something more.
Blood donations have become a vital part of my life & will continue to be indefinitely, so I ask all of the healthy people out there to please take the time to donate blood. Every donation gets someone one step closer to recovery and in my instance, one less stressful minute worrying about whether some day resources will not be enough to cater for me.

Every single donation DOES save lives and for me, it's a chance to win mine back.