Our guest post this week comes from Kelly who is living with Fibromyalgia. She shares her unique perspective on taking part in a clinical trial exploring chronic pain and sleep disordered breathing.
If there is one thing I know for certain I will do nearly anything to improve the odds of finding a cure for that which ails me. Granted some situations are more ideal than others. Luckily my clinic trial was the epitome of such luck.
When I first got the call I was extremely skeptical. This would be my first foray into clinical studies. It was an overnight, not just one but ostensibly 3 nights. Undecided until I was informed about the possibility of earning $900.00 IF I completed the entire study. “What time should I be there?” oh and where are you located? After telling me where I said half kidding “I’m not from here I wish you offered transportation” Without missing a beat she said they would pick me up and return me the next day! They were extremely accommodating.
The first day was the requisite paperwork. Not so bad. The director went over every word of the “Informed Consent Decision” to be positive without an iota of doubt that I fully understood what was expected of me. I always felt if I didn’t want to continue it was not a problem. Even the consent form repeatedly said if at any time I felt uncomfortable or wanted to bow out I could do so with no consequences.
After the paperwork I had a physical, gave a medication history and of course a urine test. There was also a Cognitive portion to compare how better sleep might affect my brain. All this information would be fed into a computer and several researchers would go over the data and decide if I should return for my first overnight. It’s conflicting when you find out your a good candidate for a study but that also means I wasn’t breathing like I should be when I sleep.
Just as promised a driver showed up in an immaculate car. She said she has been doing this for over 15 years. She answered my questions and by the time the 30 minute drive was over I was very relaxed and ready to be tested! When I arrived I was a bit concerned because it was so quiet. Anybody here ? Out came Ted the tech. “Hi, I’m Ted and I will be your tech for the study. Let me show you around and then we can get you wired for the study.” I was told what to wear, loose shorts and top, panties can stay but no bra. There were several electrodes, belts and sensors in the chest area. Ted was obviously taught how to place these while I kept covered. One of them had to run down my leg from my waist. He instructed me how to thread it through my pants so all he had to do was connect the free end. All done with my comfort in mind.
Before we started he reminded me if I needed to use the restroom now was the ideal time. I could go after being hooked up but would have to be unhooked and carry this bundle of wires with me and then repeat the process in reverse when I was finished. Got it. I always get up at night but I’ll be danged if I wanted to play pin the electrodes on Kelly at 3am. He also made it very clear he would be watching me by a camera in the main room where all the data was going. He could also hear me and if I needed anything just talk. “Don’t be surprised if the light flashes on” he said “ there is a built in safety if your heart rate drops too low, we have to immediately administer oxygen and send you to the ER.” This might be unique to this researcher. Before the wires are attached I was checked for alcohol.
Alcohol disrupts your sleep so if any alcohol shows up in your urine or with the breathalyzer it’s bye-bye until your bodily functions prove you have not imbibed. Let me add here for anyone who is not a drinker nor familiar with a breathalyzer, ya gotta blow in (with gusto)and not over the top for the thing to register correctly. The technician was kind enough to say he should have done a more thorough job of explaining how it works. The night went off without a hitch. At 6 am he very softly said over the intercom “Good morning, I will be in to remove your wires in a few minutes.”
He even took the time to explain some of the results to me. It looked like I was perfect for the next round but when my results were sent to the other researchers they felt I only met the criteria in two categories and not the required three. Granted, I was disappointed but grateful for the experience. If called again I would definitely participate. The best way to battle Fibromyalgia is with knowledge. Any time an opportunity for learning more about Fibro comes along I will be there.
Thank you, Kelly, for sharing your clinical trial experience! Thanks to CureClick for connecting us with Kelly through a collaborative effort to help clinical trial patients share their stories.
If you have a story to share with our readers about participating in a clinical trial, overcoming adversity or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Click here to get started sharing your story now!