Skip to main content

Results from NIH

I’m tired.

I’m very tired.

It’s going to be a long week and it’s only Tuesday.

I don’t think I realize just how much the trips to the NIH take out of a person until I get home. All I’ve wanted to do today is sleep. I’m completely worn out. I’m usually worn out by the time I get to NIH and I return a different sort of worn out.

The trip was full of some good news. First, the mystery lump in my breast is – drum roll please – not cancer. Yahoo! I really didn’t feel it was because I’ve been through this before and it always turns out to be a calcium deposit. But still, there’s always that “what if” lurking in the back of your mind whenever anyone in an all-knowing white coat wants to test something. Had it been cancer I don’t know what we would have done next. It would have affected the drug trial, and since I already have pulmonary fibrosis, I suspect many of the cancer treatment options, like radiation, would have been a bad idea for my lungs. I was afraid I’d find myself in a pick-your-poison sort of scenario.

My pulmonary function tests were also very good. Actually, with the exception of one number, they were out of the ballpark.

Every time I come Dr. Gahl asks me, always in front of the students for some reason, if I think I’m getting the drug. I hate the question. I hate it because if I’m not getting the drug I’m going to look like a real schmuck when the blind is finally broken. I hate the idea that I could be that prone to the power of suggestion. But yes, I do think I’m on the drug.

The little bit of discouraging news is that one number on my pulmonary function test that tends to indicate inflammation was down quite a little bit. This would indicate my asthma isn’t well controlled and that there are some restrictive airway issues going on in there. That probably explains the increased cough and some of the shortness of breath. Kevin changed my asthma medications. It’s a bit concerning to me as with so many of us the pattern seems to be asthma and inflammation before turning to fibrosis.

My CT scan also showed an ever so slight amount of new fibrosis. The doctors went out of their way to stress it was tiny, barely worth mentioning etc. etc. etc. Intellectually I get that. On a more primal level, however, the idea that there’s even one additional fibrotic cell in there just doesn’t sit well with me.

It reminds me that while I’m doing well, and that while my disease seems to be moving very slowly, it’s still moving. It’s still there sort of lurking beneath the surface. This isn’t a cure.

But, it’s better than the alternative.

Comments

Anonymous said…
Heather: I just wanted to commend you on your courage to particiapte in the NIH study. Research simply can't go forward without the particiaption of patients like you. I was hesitant to post a comment on your site because you are taking on a very personal battle with HPS and pulmonary fibrosis, but at the same time you are sharing your story publicly, which will certainly inspire others. You write about your experiences quite honestly and descriptively, and I just wanted to let you know we wish you the best.

My regards,

Mark Shreve
Founder, Coalition for Pulmonary Fibrosis
Anonymous said…
Hey Heather,

We are soo happy to hear that your test results came back good and that the mystery lump wasn't cancer. Whohoo!! It's always scary dealing with questionable spots. I know what you mean about the tiny new fibrosis area. You are doing so well. Just hang in there and continue doing what you're doing. It is obviously working well for you.

Love and prayers,
Candice and Crystal

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

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.

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