On my way home from Philadelphia earlier this week I stopped by Ohio State University in Columbus Ohio to participate in the Cardiac Study with Principal Investigator Dr. Subha Raman. This study uses a cardiac MRI to take very accurate pictures of the heart. The purpose of the study is to develop a protocol for detecting common signs of cardiomyopathy (the condition that shortens the life of an FA patient) in FA. Little is known about cardiomyopathy in FA because there has not been an accurate way to track it...until now. With this new technique, cardiomyopathy can be detected in early stages and can be treated with common, established treatments.
This study was one of two ($120,000 each) funded by the proceeds from Ride Ataxia II.
I showed up to the Medical Center and was greeted by the smiling face of Beth McCarthy (Dr. Raman's research coordinator). I got checcccked in and we headed back to the prep room. There was a team of four other nurses in the room to wait on me and make me feel comfortable. The first thing was to get into some more comfortable ccclothes so they gave me a robe and some pajama bottoms to change into. Once I was changed, they told me to laaaay back and they got started. First, one of the nurses shaved three patches out of my hairy chest so they could find skin to put some little sticky electrodes (maybe I should just shave it all off).
Then another nurse put two IV's in my right arm (she said I have nice veins and I called her a vampire, she gave me an affirmative shrug). Ine of the IV's was for the injection of a drug that causes the blood vessels to expand temporarily so they can see the vessels more clearly. The other IV was for a "contrast agent" which helps the MRI machine see the blood vessels in contrast to all the other stuff on the inside.
After I was all poked, prodded, and prepped I got in a wheelchair and they transported me over to the room with the MRI machine. As we waited for our turn to use the machine Dr. Raman sat down with me to chat about the study. One of the things that stuck out to me was that this technique is very accurate and the results are easily reproduceable. Often times in a research study the results have a lot of variability so it takes a large number of participants to produce statistically significant results. The MRI technique used for this study is produces dependable results that not variable and can be reproduced easily.
When the machine became available, we rolled in to meet another two technicians that were there to monitor the process. I transferred to the little sliding bed which would carry me into the machine and they got me all hooked up to wires and IV's again.
The scan would take 45 minutes but I wore headphones for communication with the technician and the headphones played music so I didn't have to listen to the loud, strange noises coming from the huge machine that surrounded me. About 20 minutes in to the process, the technician informed me that they were going to inject the drug that would enlarge my veins, she told me that my heart rate would go up, my chest might get a little tight and my breath might get short. The injection went in and I felt all the symptoms but they were not half as bad as they were hyped up to be. That was the most uncomfortable part of the process...piece of cake!
They removed me from the MRI machine at 11:55 and I was supposed to be speaking at noon. So we rushed back to the prep room where I was hooked up for one last EKG before I quickly changed and headed out to address the members of Dr. Raman's team. During my talk to the group I let them know that we (the FA community) are their biggest fans and we aare in awe of their brilliant and capable minds. I let them know that the funds for their research came from a patient driven fundraiser which makes it all a little more meaningful. I let them know that they awre now part of a strong team that consists of patients, doctors, pharmaceutical companies, academic institutions etc. with the common goal to CURE FA.
Once again I felt empowered by participating in this study, especially knowing that this study operates from money raised during Ride Ataxia II.
Eventhough they pay each participant $100 (cha-ching), for me the main perk of participating in this study is that I have the best heart doctors in the country looking at my heart specifically for things that are caused by FA. There are lots of good cardiologists out there but OSU is the only place (so far) that offers such a close look at things that could potentially be wrong with a heart affected by FA.
To find out more about this study and to inquire about participation, please check out the recruitment notice.