Aug 19, 2011
The last two days have been a blur with a lot going on. All I can remember is being in quite a bit of pain and feeling very tired. Wednesday began late, with breakfast at the hotel at 9:00 AM followed by the usual half-dozen trips to the toilet afterward. We were finally ready to leave for The Cleveland Clinic just before 10:00. It’s a good thing that we left when we did, because of all the construction delays. We made it just in time to check in for my first 11:00 AM appointment with my Cardiologist. I had taken the CD of my Echo-cardiogram from the previous day and he had taken a look at it before coming down to the exam room. Although it did not indicate anything remarkable, he assured us that the pericarditis is real along with the excruciating pain that goes with it, regardless of what the pictures may show. It usually only shows up in a CT scan anyway, which he did not think would be warranted, given the risk of the allergic reaction that I had to the contrast dye the last time they did one.
The Cardiologist thinks that the worsening pain was undoubtedly caused by the fact that I have been unable to take the Ibuprofen that he had prescribed for the past three weeks, due to the upcoming surgery to be performed that afternoon. He felt that as soon as I began taking the anti-inflammatory, once again, I would feel a whole lot better. Boy, was he right. Within hours of taking the first dose of the Ibuprofen, after the biopsy surgery, I was feeling much better. Unfortunately, the pain was then concentrated in my belly, where the incision was located, as the local anesthesia wore off. The biopsy was taken from inside the abdomen with the entry being made through the inside of the bottom of my belly button, apparently so that the scar would not show. This only caused the pain to be worse, once the numbing drugs wore off.
Thursday morning, I woke to a feeling like someone had punched me in the stomach – HARD! It hurt to sit up, to bend over, to walk, pretty much anything. Worse yet, I had to be back at the hospital at 7:30 AM to check in for the Thermoregulatory Sweat Test. We actually arrived early, around 7:15. So we had plenty of time to get to where we needed to be. I was summoned about 7:45 by Eric, the Autonomic technician, who had also performed the QSART test on me back in March. We went back to the new TST lab, which had just opened a few months ago. Eric explained that I was lucky number 13, the 13th person to use the test chamber (which includes all the staff and other volunteers who were part of the testing process). Eric also explained that the previous record for the longest time within the chamber was 42 minutes by a lady who had been tested for Pure Autonomic Failure several weeks prior.
The chamber was a large glass enclosed box, approximately 10’ x 4’ x 8’ tall. It had a door about half-way up, extending the complete length of the front and slid up like a garage door to allow a stretcher to be rolled into the chamber from a gurney by way of roller tracks. The inside of the chamber had been decorated along the back with a mural resembling open windows which looked out onto an ocean beach and once the test began, Don Ho Hawaiian and other tropical songs were playing over the loudspeakers inside the chamber. It was a very warm 104 degrees inside the chamber, with a controlled low humidity level. There was also a fish-eye lens camera mounted in the center of the top of the chamber to take pictures of the changes throughout the test.
Prior to being pushed into the chamber, Eric had me change into a disposable bathing suit and lie down on the stretcher that was on top of the gurney. He then started sprinkling an orange powder all over my body. Then, using a dusting brush, spread it out into an even coating all over my skin. He explained that this was the same powder substance that the FDA uses to mark beef, turning a deep bluish purple when it comes in contact with moist meat. He attached a temperature sensor to the skin under my left arm and placed another in my mouth inside my left cheek and pushed me over to and inside the chamber. It actually felt good, after laying half-naked on the stretcher in the air-conditioned room for several minutes while being coated with the orange powder. Before shutting the door to the chamber, Eric placed a remote, hand-held microphone at my side in order for me to talk to him and Dr. Shields from inside the chamber.
I entered the chamber looking like an Oompa Loompa from Willy Wonka. But, after 54 minutes inside the chamber (yes, I now hold the new record for the longest time inside), I exited not looking like a Smurf, but like I had been in a serious car accident or severely beaten up in a fight. I had deep purple “bruises” in various spots on my torso, around my neck, across my forehead, and on both knees. The rest of my body was still dry with the orange powder still in place. I did not produce any sweat on most areas of my body. Before pulling me out of the chamber though, Dr. Shields told me that it did not appear to indicate Multiple System Atrophy, since my body temperature remained fairly consistent, and even went down a degree. To have ruled out MSA was a huge relief. However, Anhidrosis is the inability to sweat normally. While this may not sound like a serious condition, anhidrosis can be life-threatening. When you don't perspire, your body can't cool itself, which can lead to overheating and sometimes to heatstroke — a potentially fatal condition.
It took almost 10 minutes in the shower adjacent to the lab in order to wash off all the powder and purple dye. When I was done, Eric was kind enough to show me some of the pictures of me inside the chamber. He even pulled up a before and after picture and we did a side-by-side comparison.
After finishing up in the Autonomic Lab, John and I grabbed some coffee then headed up to the roof-top pavilion for a short break between appointments. We then headed over to the Crile building at 11:30 for my appointment with my Gastroenterologist. It was January when I had last seen him. So, it took a while to get caught up on everything. Because I am still having so many different issues with the digestive system, he wants to have some additional testing performed. Although, the Fibromyalgia and Dysautonomia diagnosis would explain some of the symptoms, they do not explain away everything that I have been experiencing lately. In addition to repeating the 72 hour stool collection, this time being on the correct “high fat diet” before-hand, he also wants me to have a glucose breath test to rule out small bowel bacteria growth.
We left Cleveland just after 11:00 this morning. I had a hard time getting out of the bathroom, and once on the road we had to stop several times within the first hour. I still feel like I took a huge blow to my mid section from the biopsy. We got home just before 6:00 PM, and it is so good to be home.