Skip to main content

National Donor Day – a special kind of Valentine

Today is National Donor Day – a day to highlight the very special gift that those who agree to become organ donors give to the 120,000 of us currently waiting for new organs in the United States. It is the kind of gift that words fall short of. Hallmark doesn’t make a card for this. How could they? 

I’ve noticed from the experience of some friends who have received their lungs that the time frame before you are allowed to contact (through UNOS) your donor family has changed. They told me in my transplant education that while I was still in the hospital, I’d be given a card to send to my donor family. It is, of course, up to them whether we ever make contact. I know if they are willing, I will want to do it. 
I can’t imagine writing that kind of thank you note, especially while still in the hospital – but I could never not do it! I’ve been thinking of writing a note and having it in my things ready to go so that it is well thought out, and ready to go. 

What do I say? I’ve spent a lot of time thinking about it lately. Do I tell them about my anti-bucket list? (It’s the list of things I’m looking forward to doing when my lung function is normal again.). Do I tell them about my life before the transplant? How does that not sound like a resume for my lungs? I want them to feel that their loved one’s lungs have found a good home, and that I am somehow worthy of such a gift. Just thinking about it makes me teary. 
A few weeks ago I was watching a medical drama. I used to love those kinds of shows, but have been watching them less frequently these days. This particular episode (fiction) followed a family as they decided to donate their loved one’s organs. They went from hope to resignation. I know better to believe that this dramatization was anything like what families donating a loved one’s organs might experience. Spending a lot of my time in the medical world, I know these shows make sacrifices of fact and reality for the needs of an hour-long drama all the time. Still, even so, I was balling. I think I cried for 40 minutes. 
I think about this family whose path will cross with mine someday a lot. 

So, on this National Donor Day, let me just say THANK YOU! to the live donors and donor families out there. What a gift you give us. It isn’t just the gift of life, it’s the gift of hope. 

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

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