Thursday, June 2, 2011

The Story Continues....

So this woman whose life is turning upside down tries one more doctor. He takes one look at her and visibly pales. "You are SICK," the doctor said. She almost breaks down, never thinking she would want to cry and thank someone for telling her she was sick.

The woman goes to a sleep study, where she finds out that her oxygen levels at night go down as low as 27. She is woken up half-way through the study to be given oxygen.

She must now be on oxygen 24 hours a day. The first day she literally gets high because her brain has been so deprived of oxygen. The woman's thoughts are still so scrambled.

The doctor that saved her life by sending her for a sleep study sends her to a neurologist. The woman is more frightened now than ever.

Her brand new husband (who put her hair up on the day they got married because she couldn't hold her arms up to do it) goes with her.

"It's a tumor on your spine," the neurologist says, without ANY diagnostic testing.

The newlyweds look at each other in stunned terror. "How can this be happening?" they both wonder.

The woman goes for another test called an MRI. She is afraid to be put in that machine. She asks the doctor to sedate her. She goes for the test, gets sedated, gets laid flat, and quits breathing immediately. She turns blue. She must be emergently intubated to stay alive.

There are no tumors. But there are no answers. Every test comes back negative or inconclusive. The doctor tells her she cannot leave the hospital until they figure out what's wrong with her.

Four days later, she is unconscious, intubated, on a helicopter, flying to a University Hospital 150 miles away. She doesn't remember the next 2 weeks. Later she's told she got MRSA pneumonia, and almost died.

To get her off the ventilator she had been on for 15 days, the doctors perform a tracheotomy. It is temporary, they say. "I sure hope so," she fearfully thinks.

The new calendar month brings new doctors, who abandon all previous treatment, and tell the woman that she is neurotic. One of the neurologists stands by her bed and rubs her arm gently. He tells her if she will only accept her mental condition, she will improve.

The woman cannot speak because of the trach, so she writes, "So you're telling me I'm crazy??" To which the "doctor" condescendingly nods.

The woman does not understand what is happening. She can't believe she's losing her mind.

To Be Continued......


Margaret said...

I don't know how you survived all of that. I wish more people could understand the hell we go through just to be told what is wrong with us.

Patty Ann said...

I am so, so very sorry. Not every doctor in Medicine is compassionate and caring. I am amazed at your strength and tenacity. You are awesome!

Rachel said...

It breaks my heart to read how much you have struggled. You have such strength and courage! When I'm having a bad MG day you always give me the encouragement I need to face the day!

CoconutPalmDesigns said...

You gotta love "doctors" who diagnose without any tests. How you managed to get through all of that is a wonder to me but I am glad you did!

Cheers :-)
- CoconutPalmDesigns

Anonymous said...

You write really well, and I love your youtube vid.

These posts make me sad. I just get so angry to think that these doctors took so long to diagnose you. I guess maybe things were different then, but the symptoms you mentioned are so clear of MG - and I'm not even a doctor yet.

My mom has a chronic illness too - as debilitating, but not as dangerous as MG - and it took her ages to get diagnosed as well.

You're amazing, do you know that? Thank you for inspiring me.

(Found you via SITS)