Monday, June 4, 2012

Royal Mail pushing the envelope part II

I know I have been talking about Mighty Z starting desogestrel as a possible cure for CCHS (Congenital Central  Hypovenitlation Syndrome) and how that I am excited yet nervous to start the drug.

We have been working towards this for well over a year and every step closer we get the more excited and yes nervous I get

I have been having "issues" with being able to get it. Not that my doctors have not been supportive of it just that it is hard to physically get.

I first asked my Aunt who has family in Canada to help me. She was very excited to be part of helping Mighty Z get the medicine, but we found out that you can not get it in Canada so back to trying to figure out who to go to for help.

So after much prayer and thought I remembered my sweet sweet friend in England. I sent her the prescription and her doctor had it filled for Mighty Z. God truly works in crazy was.

So whats next you ask? well so I emailed both Endocrinology and Pulmonary and told them I have the drug and so we need set up a time to do a baseline on Mighty Z. I don't know if they want to do this as an outpatient or an inpatient so we wait and see. Hopefully the doctors will get back to me on a date tomorrow.

UGH I hope I can sleep tonight..................

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