need prayer

[Guest guest]

Hi Everyone!

I haven't written lately, but I have been reading everyone's posts and

praying for all of you. I have been having a very difficult time now. I am

53 and have been sick since 1986. My husband was a pastor, but he stays

home and is my caretaker now. I have hypothyroidism, NASH (an alcoholic

liver, but I've never drank), pancreatic enzyme insufficiency, metabolic

syndrome, error in zinc transport, hypomobility of the intestines, muscle

weakness, muscle spasms, encephalopathy, lack of sweating and now profuse

sweating, asthma,etc., etc., etc.

Now, I have some new problems, COPD, and I totally stop breathing. Not fun.

I've had the paramedics called twice in the past week and a half, once from

a sleep lab. I had to be intubated, my pupils were fixed and dilated, and I

couldn't wake up. I knew what everyone was saying and doing, but could not

respond or move. I started out on a CPAP machine, now a BIPAP, but I'm

having trouble getting a BIPAP-ST. It has a backup that makes it a

respirator when I stop breathing. Medicare thinks that you should be on a

regular BIPAP for 3 months before you get switched to a BIPAP-ST. I have to

wait until next week to see the pulmanologist to get another prescription

and a letter of medical need, in order to get one. In the mean time, my

husband stays awake all night making sure I keep breathing and sleeps during

the day, when I'm awake.

I see Dr. Enns at Stanford. They called, yesterday, and told me that my

muscle biopsy of 11 years ago showed a deficiency in the IV enzyme. But

the biopsy is old and could be wrong. The testing was done in Buffalo, NY.

So, they are having all of the samples shipped to them at Stanford for

further testing. They don't want to do another biopsy, because of my

breathing difficulties. I just need a diagnosis. Even if the ER people don

t know what it is, they won't be asking me if I'm an addict, and I can't

even respond to them.

Gosh, I have smoker's lungs (I've never smoked) and an alcoholic liver (but,

I've never drank). When the hippies were big, I was a Jesus People.

In need of your prayers,

Kaspick