Living on the frontlines

We added a new HPSer to the registry this week. This puts us at 80 to go on this year's Hundred People Search! Keep outreaching. We need you more than ever! 

We've added three more HPSers to the HPS patient registry in the last few weeks. This puts us at 81 to go on the Hundred People Search (HPS). Please encourage anyone you know with HPS to register, even if they don't want to be involved beyond that. It is a way to let research know we are here, and we want a CURE! 

My next transplant appointment is in roughly two weeks. I had hoped I’d be listable by then, but it’s not going to happen. The dental saga continues. Honestly, I’m a little frustrated. I need a root canal before I can get dental clearance. After much back and forth (that I won’t get into here) the doctor that was going to do the procedure now cannot do it. The problem is that my cough is so bad; I can’t promise that I can not cough during the procedure.  If you’ve seen my cough, you know it isn’t a dainty little cough. It is a violent cough. It can go on and on and on sometimes. So, the plan was to use sedation. The only way to stop the coughing, however, was to do general anesthesia. My pulmonologist (rightly so I think) nixed doing it at an outpatient dental anesthesia center. I was very worried all along that this plan wasn’t the best one, but everyone seemed to think I was overacting – so instead of checking this out first, plans went on and only came to a halt days before t...

Inova Fairfax Hospital My next transplant appointment is in roughly two weeks. I had hoped I’d be listable by then, but it’s not going to happen. The dental saga continues. Honestly, I’m a little frustrated. I need a root canal before I can get dental clearance. After much back and forth (that I won’t get into here) the doctor that was going to do the procedure now cannot do it. The problem is that my cough is so bad; I can’t promise that I can not cough during the procedure. If you’ve seen my cough, you know it isn’t a dainty little cough. It is a violent cough. It can go on and on and on sometimes. So, the plan was to use sedation. The only way to stop the coughing, however, was to do general anesthesia. My pulmonologist (rightly so I think) nixed doing it at an outpatient dental anesthesia center. I was very worried all along that this plan wasn’t the best one, but everyone seemed to think I was overacting – so instead of checking this out first, plans went on and only came to a h...

On previous anniversaries I’ve blogged about where I was on Sept 11, 2001 and how I spent the day. I’ve blogged about my thoughts for all of those affected by the disaster. Today, amid an atmosphere so polarized, I want to remember the day after – Sept. 12th. When I was a kid my grandparents’ generation talked about how America rallied together during the war. There was a feeling of unity that they remembered well. On Sept. 12th, I walked through my neighborhood in Overland Park, KS to get some fresh air. Every house, every single one, displayed the red, white and blue. No one’s house was Republican or Democrat, Christian or Muslim, White or Black – we were Americans. We were united in the way I imagined when my grandparents talked about the war. I spent the day of Sept. 11th, and several of the following days, doing stories from the American heartland for the South China Morning Post. I remember doing one about flag sales and how Americans were displaying the flags. By Sept. 12...

I'm a bit behind on updating the Hundred People Search. In the last few weeks, we have added two new HPSers to the HPS patient registry. If you know anyone with HPS who is not a member of the Network, please encourage them to join - even if they don't want to participate in any other way. We need to prove to research that we are out here, and that we NEED A CURE!