Wednesday, May 18, 2011

May 17 Clinical Trial baseline visit : FSGS Sucks

I'm officially in!  The clinical trial...that is.  My biopsy slides have all been read and confirmed...blood tests, urinalysis done, and I'm a perfect candidate for the trial.  So yesterday, I drove down to Cincinnati Children's Hospital to get my baseline labs done.  I LOVE LOVE LOVE the people I'm working with down there.  Barbara and Dr. Goebel are THE BEST, and I really feel that they're excited about the possibilities that this trial could provide.  Plus, Dr. Goebel always has at least one good story for me :)  So, pending the results of my colonoscopy, I should be randomized sometime next week.  If something is found during my colonoscopy that requires treatment, then that could derail things, so keep your fingers crossed that ti all comes out ok.

And now I just wanna give anyone that's curious an idea of what it's like to participate in one of these.

This is a LOT of blood.  Some of it is for the trial, and some of it is for the National Registry.  I agreed to provide samples for it for any future tests that need to be performed for people like me.
Here I am holding my arm at heart level for 5 minutes before my blood pressure was taken.  No idea why, but that's what the protocol says to do.
 And blood pressure.  I had my weight and height done too, but that's not too interesting.  Well, maybe the temperature isn't either, but I had my phone handy here :)
 After the blood work and vitals, I was put in another room.  Here, I answer a survey on paper and on the computer about my emotional and physical state.  I'll do these surveys periodically throughout the study.  That binder is full of info on ME.
 And here's the room I was in.  This is a brand new part of the hospital specifically for research, and it's VERY warm and welcoming.
 They even have things for kids to do while they're waiting.
 After the survey is over, Dr. Goebel comes in and we talk.  He gathers info such as how I've been doing, how's my swelling.  We talked about my colonoscopy (of which he also had a story), and he was telling me about a patient of his who had "FSGS from hell".  I asked what that meant, and I have to say that I felt VERY lucky that my FSGS is fairly mild.  They eventually ended up taking this patient's kidneys out because of all the damage it was doing to him and his heart.  He was on PD (perioteneal dialysis), but it was so hard on his heart, so they also put him on haemodialysis for part of the time to be easier on his heart.  Long story and there's more involved, but this patient paid a hefty price for some semblance of health.  He had a transplant, and they were very worried that his FSGS would recur because it was so viscious, but it hasn't!  Good news!

An that was pretty much it.  I will come back to Cincinnati about 2 weeks after I begin the drug part of the trial, so it could be a month or so.  It feels VERY good to be taking part in this.  And as a treat to myself, I stopped at Skyline chili on the way home.

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