Living on the frontlines

I'm still catching up on Hundred People Search updates. I have five new members added, and that puts us at 73 to go on this year's Hundred People Search. Way to outreach! Keep up the great work. 

Tuesday turned out to be an exciting day! I collected three hospital bracelets (my jewelry) in one day, and none were allergy bracelets etc. They were for three different admissions! Woohoo! Bracelet number one The morning started off like my Tuesday mornings usually start off. I’m up at 4:30 am to get through all of my medications, take Finley out, and have plenty of time for coughing and sitting down to catch my breath to be ready for the cab at 7:15 am. Rehab wasn’t going as well as it had on Friday, but you have good days and bad days. I was on one of the bikes, and it was almost time to go. One of the respiratory therapists came over and said the transplant clinic had been trying to call me and they needed me upstairs right then. Of course my phone was in my purse because I was working out. At first it didn’t hit me why they were looking for me. I thought they might want another sputum sample and I have my paratransit ride to go home after rehab. It is hard to just “run up to c...

We've added four more people to the HPS Network registry. That puts us at 78 to go on this year's Hundred People Search (HPS). 

So, I've got some Hundred People Search backlog to get through. We've added four new people to the HPS registry. This puts us at 82 to go for the Hundred People Search (H.P.S.) Some of you have been doing so great with the outreach! Some of that outreach is happening in Puerto Rico, despite no power and poor communications. You all are amazing! Keep up the great work! 

It has been a week since my transplant appointment, and I’m just now getting around to blogging about it. I have a ton to do, but am making the time to blog today. Grin. All and all the appointment went well. I did better distance wise on my six-minute walk, but needed 10 liters of oxygen to do it. Even then I spent most of the walk saturating in the 80s. (They stop the walk if you go below 80 now, which I did last time on eight liters.) In practical life, this means I have to make myself walk slower, or crank up the oxygen to 15 liters, which means the tank is gone in minutes. It also means I’m hugely grateful for the wheel chair I have now. I still try to walk Finley around our block, and the park (about a half mile) several times a day. The route is fairly flat. I really can’t do hills anymore. Usually after about a mile I’m getting tired. I can do more, probably another mile more, but the tradeoff is that I won’t have the energy to do much else for several hours. If all I had to do...

We have added a new HPSer to the patient registry. This puts us at 86 to go on this year's Hundred People Search (HPS). Keep up the outreach! 

Living with a rare and chronic illness is never easy, but try doing it in the face of an epic natural disaster – no water, no power, no fuel – forget easy access to medical care, medical equipment or medications. My family connection to Puerto Rico is distant. My great grandfather was from the northwest part of the island. He came to the mainland United States to go to college, and eventually became a professor at the University of Oklahoma. He was a linguist. While I inherited an HPS gene from him, sadly I didn’t get the language gene. Living in Europe, I learned a lot about the history and culture of the other aspects of my heritage, but I never knew much about Puerto Rico. My grandmother would tell us stories about visiting the family plantation when she was a child, but that was about all I knew of the place. When I was diagnosed with HPS, one of the blessings (instead of curses) that came with the diagnosis was a sudden intimate connection to the island. Suddenly I knew tons of ...