Doing my bit for the cause

I thought because I've been on treatment 4 times for Hep C in drug study trials that I'd done about all I could for research. One of the drugs they put me on years ago was Interleukin ... which they discontinued as they found it can cause ALS. I was still signing releases a couple years later. Never got positive results from any and I was on interferon and ribavirin for a year. The other treatments were various forms of interferon for varying lengths of time.

Yesterday I was part of a group of patients brought in for second year medical students to practice on. They had no idea of my particulars. They were to look for signs of liver disease and learned how to check for jaundice, palmar fascia , spider nevi, edema, splenomegaly, ascites, and some other stuff I've never heard of ... reduced facial muscle tone, "bulging flanks" (indicating ascites). Mostly I just had to lay there while they prodded and poked about with a hepatologist guiding them. It was interesting. I was positive for everything but jaundice and facial muscle tone loss. Thank goodness I already knew that. The spider nevi especially interested them - you press on it and it fills differently than other "spots" ... same with edema ... it gives dramatic results I guess. I was impressed by the knowledge they already have at two years in.

I literally just got in the door and the phone range with a different department of the same research group (at the liver clinic I go to) asking me to take part in a HE study ... to help them come up with better ways to determine at what point folks shouldn't drive any more. It will be four or five hours of testing. Thankfully it doesn't affect my standing at all and doesn't go in my medical file ... but I will be interested in what they say anyway. Just hope I don't have any HE the day I have to go in ...lol.

There's a method to my madness ... I'm hoping to get on a Sovaldi drug trial this December or January ... and if they keep hearing my name perhaps I'll get in it. When they want a patient to take part in a study such as the HE study they have to check with my hepatologist first so that's a continual reminder to them ... that I'm still waiting. They've already done a sub genotype testing to determine if the risks are manageable. Not sure what they're combining Sovaldi with ... but I have made it clear I'm never doing another one unless it has Sovaldi type results! Wish me luck.

Same experience at MGH. My surgeons were German and Syrian and Chinese. The rest of the docs (infectious disease, anesthesiologists, etc,) were all from other countries, with the exception of a (woman) resident.