Monday, July 6, 2009

Collapsing all over the place...

I forgot about a few other symptoms: emotional roller coaster, skin changes (mostly on the scalp and chest), slow healing from open wounds, bruise easily, swelling ankles, insomnia, irritability, and over all, feeling pretty crappy.

Now that I have that out, let me continue with my story.

The next step. That is what I was always thinking about. What was next? What test did I have to do next to get to the point where the doctors would say, "Yes! This surgery will take care of everything. Let's do it!"? That would not happen any time soon.

I did more testing - another MRI at UCLA, more blood tests, urine tests, a chest x-ray (prior to a procedure), went through the horrible task of donating blood to myself, and then the IPSS.

I really hate needles.

The IPSS stands for Inferior Petrosal Sinus Sampling. It is a procedure done under general anesthesia by an Interventional Neuro-Radiologist. The procedure takes at least two people to perform it. They put catheters up the groin area and guide them into the head to sample blood from both sides of the pituitary. They do this and also draw blood from the stomach. This is done several times at intervals. There is some kind of hormone that is injected after the first draws and these are all compared to each other. The ACTH in the blood will tell the doctors which side of the pituitary the tumor is on, and confirm whether there is a tumor there at all.

I went in for this procedure on Thursday April 19th. I woke up on Friday April 20th. My hands were tied down to the bed. My eyes were goopy from the stuff they put on them for surgical procedures. I was intubated. Essentially, I could not communicate other than banging my hands against the side of the bed to get someone's attention. Nobody was there. Then the nurse came in and injected something into my IV. I fell asleep again. This happened a few times. Nobody told me what was going on.

Finally, my husband, daughter, mother, AND father (that's when I knew there was something wrong) came in the room. My husband explained that the procedure had not happened. I was in the ICU and that they were going to remove the tube any time. I actually was able to communicate to my husband that I needed the inside of my right ear scratched. This was not an easy task considering I couldn't speak, barely see, and could not do much but point my finger from a hand that was tied down to the bed.

I stayed in the ICU for the rest of that day and much later was transferred to a normal room. On Saturday, I was released to go home. I had been poked and prodded all over. I had tubes all over the place.

So, why did the procedure not happen? Because my neck is so fat (because of the Cushing's), I was a hard intubation. It took the anesthesiologists an hour and a half to intubate me, after which, my left lung collapsed due to a mucus plug caused from the intubation itself. The procedure was cancelled at that point. I had a bronchoscopy instead and several chest x-rays.

I coughed up blood for two days and finally it stopped. I was put on an antibiotic and told not to go into the sunshine.

After leaving the hospital, I did end up going to the beach where my husband covered me in spray sunscreen (which attached itself like dew onto my white fuzzy hair all over my body and face), and then he covered me in a towel and hat while I laid down enjoying the sound of the ocean and the birds flying overhead.

The following Thursday, April 26th, I finally had the procedure. I was released from the hospital by noon that day. The results from the IPSS would cause another collapse, but this time, it would be of my emotions.

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