Skip to main content

Don’t miss out on our miracle

Last night an old friend that I don’t stay in touch with much these days called. He was calling to tell me another long lost friend had resurfaced and relay some old college friend type gossip. This friend has always had a talent for saying the exact wrong thing at the exact wrong moment – so it was no surprise when, completely unaware, he stepped in it once again. I cut him a lot of slack because I know he typically means well. He’s just not talented at picking up the unsaid vibes in life that lead you to know when to say something, and when to keep your yap shut.

It’s hard to explain to people, especially people who are really trying, how to be supportive. I think sometimes people say the wrong things because they’re just trying too hard to figure out what to say at all. My tip – listening often means more than any words you could offer. Sometimes the best thing to say is nothing at all.

My old friend asked me how recruitment for the drug trail was going. I answered slow, grateful for the interest.

“How many people do you have in?” he enquired.

“Nine, I think, as of two weeks ago,” I answered.

“How many do you need?” he asked again, showing genuine interest.

“At least 40, and we need them by September,” I answered.

“And you’ve been recruiting all this time? Well, I hate to tell you, but you’re not going to make it.” he said, “Not unless there’s a miracle or something.”

“And your point is?” I answered. The conversation quickly went downhill from there.

“You should get used to the fact that you aren’t going to make it,” he said. I explained that there was a fall-back plan, but that it would cost us more precious time. In my mind, September is the goal. He proceeded to argue with me about the sanity of this idea.

What exactly am I supposed to do? Be content to sit around and wait? Am I supposed to lose more friends to this disease? Am I supposed to watch more years slip by while the people that need this drug aren’t getting it? I don’t think so! I contained myself and didn’t chew him out with an explanation of what it’s been like these past nearly four years waiting for this trial to even happen. I have seen too much, watched too much, to not press for our miracle.

I’m not stupid. I know we need a miracle. Nothing short of intervention from God is going to get this done – so what? This is in God’s hands. That doesn’t mean I, or most of my HPS friends, are going to sit around and wait for things to happen. We’ve ordered up a miracle, and we're trying our best to play our parts to make it happen – stay tuned.

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for...

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria...

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.