A friend of mine on the Eagle Nest is dying, here is the original post from her husband


Most of you who have read my posts know that Skeezix has been dealing with a medical condition. For those of you who believe in prayer we ask for your support. Skeezix has been in a steady decline for a couple of years and we had been unable to find a cause. Most Doc'* said it was in her head and all that stuff when they do not have answers. Their egos will not let them admit their limitations. Last fall we managed to get to a special molecular medicine clinic in Atlanta for testing. In March they determined she has a very rare molecular illness called mitochondrial myopothy. There are no cures, only supporting treatments and it is terminal. She is close to the point where her body will not produce enough energy to support life without some intervention.

We just celebrated an anniversary and she felt well enough to travel to my sister'* in NH. On the way home her condition worsened and we made an emergency stop at Dartmouth Medical Center where they were able to stabalize her. She is under the care of a molecular medicine doc at Albany Medical College and he had provided an emergency medical protocol that we were able to give the docs at Dartmouth. We spent Friday, Saturday and Sunday at Dartmouth and then they transported her to Albany late Sunday. She spent an exhausting day of consultations today. She is having surgery Tuesday to put a port in. The port will be located in her upper right chest and will provide a direct line to her heart for medicine and treatments. I have to learn how to access the port and start I V'* so that ought to be fun. She will have to have a treatment 3 days a week for the rest of her life. Each treatment lasts 10 hours and can be done at night or with a portable pump during the day. They have to outfit the house for the pump and a lifeline. The treatments help her to build up energy reserves so she can do a few things she has not been able to. At Dartmouth hospital they said she was a hour away from death. The treatment allowed her to recover enough to survive on her own. Lots of changes ahead. This is not a cure but it will slow down the decline and improve her quality of life until it stops working.

So, for those who chose, we would appreciate your kind thoughts and prayers for Skeezix to be able to enjoy the time she has left and to be able to do a few of the things that brings her pleasure.

OMG! She is definitely in my prayers!
My dept head was diagnosed with this last year after not feeling well and then getting worse very quickly ever since. In under a year he went from being perfectly health to barely able to move and has lost 100lbs (actually its more like wasting away)

Thank you for your prayers

I will definitely pray for them as well.

As will I.

Thank you all

UPDATE


from her husband
Skeezix is home and what a time we had with the pharmacy!!! Anyway, Skeezix posted a pic of her Marriot room.

http://flickr.com/photos/11314613@N08/1375459268/

from Skeezix
Hi All,

It'* good to be home! I thought I'd send you an example of the view I had from my hospital room. If I wasn't feeling so crummy I would have thought I was on vacation! Thank you for keeping me in your thoughts and prayers. I'm grateful for feeling better today and for good friends. I hope that you are all well.

Skeezix

Just heard even worse news.
Their daughter has it also.