Update & Upcoming Surgery

Hi all,

I will be having surgery next week to change my roux n Y jejunostomy to a regular j-tube and to repair two large incisional hernias from my previous surgeries. I'm doing okay and fairly prepared but I am also very scared because I nearly died the last time. I have a good surgeon and good care so I think things will be Ok. I just have a lot to live for and I hate that this disease is trying to take it from me.

I'm still TPN dependent and have progressed a bit since last year. I have a Groshong tunneled central catheter now and have never had any line infections to date. I am in the process of being evaluated and treated for probable mitochondrial disease which can cause both gastroparesis/motility disorders and neurological problems including dystonia. Coenzyme Q10 has done wonders for my symptoms and nearly eliminated my migraines and slowed my neuropathy. It is possible that I will be having a muscle biopsy done during the surgery to test for mito.

I'm still working on my dissertation, although gastroparesis has set me back quite a bit. I'm hoping to graduate in May of 2010. I know some of you have asked about my son. He just turned 4 and is a great little guy. He loves Spiderman, swimming, baseball, books, bugs, friends, and riding his big wheel.

You can keep up with me on my caring bridge site at http://www.caringbridge.org/visit/jenelle

I hope everyone is doing as well as you can be.

Love and peace,
Jen