Heart Failure to Transplant: Drug Trial?

I posted the following to my CaringBridge journal on November 1, 2014:

I'll be having blood work once per month or oftener from now on.  This week's results came back, and they are all within normal limits except for one type of white blood cells elevated and the BNP, a protein that shows stress in the heart was a hundred points higher than it was mid-October.  

I have diastolic heart failure, also known as heart failure with preserved ejection fraction. There are currently no drugs that directly address this type of heart failure, but I was intrigued by a reference to a drug trial called SOCRATES Preserved. It looks to me like I may qualify to participate, so I sent a link to Dr. Weisshaar to see what she thinks.

Dr. Weisshaar said it was worth seeing if I qualify for the SOCRATES Preserved drug trial, so we have been doing some sleuthing to figure out exactly who is running the study.  There are three sites in Southern California listed on clinical trials.gov, but we quickly found out that two were discontinued for lack of enrollment.  All we knew was that the one that is ongoing is in Fountain Valley, not where or who to contact. 

The first Google hit suggested it might be at Hoag.  Dr. Weisshaar called, nope they never heard of the study.  The next hit suggested Fountain Valley Regional, so I called  the clinical trials coordinator there and left a message.  She called me back the next morning.  Bad news, she hadn't heard of SOCRATES either, but the good news was that she offered to contact her peers in the clinical research community to see if she could find it for me.

She called back late yesterday with a name number and address.  I called but  the coordinator had  already left for the day.  Hopefully I'll get a call on Monday.  

I had some trouble with retaining fluid on and off this week, and I think I figured out why.  I had stopped writing down my sodium  intake,  instead just trying to keep a general running total in my head.  Yesterday when I actually went back over everything I had eaten the day before, it added up to 2000 mg.  Great if I was trying to aim for the recommendations for the average American, but my heart and  kidneys can only handle  1000 mg or less before I get bloated in my abdomen and/or short of breath.  So yesterday I started writing down every bite again.  I ended up only at 750 mg for the day, and lost 1.5 pounds overnight.


UPDATE Nov 4, 2014:

This morning I got a call from Dr David Pham of Fountain Valley Lung Care Center. He is the one running the SOCRATES Preserved drug trial.

He asked me some preliminary screening questions, and based on my answers believes I might qualify to participate in the trial.

The next step is to have my cardiac medical records sent to him for review to verify that I qualify. If I do qualify, I will need to travel frequently to Orange County, and for the first month of the trial it may make sense for me to stay in Orange County. We'll cross that bridge when and if we come to it.

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