Living on the frontlines

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 ...

It has been a rough few weeks here, but could be much worse. I’ve had a cold for a week and a half. Thankfully, (knocking on wood) it hasn’t impacted the amount of oxygen I need, and so far, hasn’t become a respiratory infection. Yet, just having a cold these days makes me so anxious! I don’t have any reserve at this point. One bad infection, and I’m going to be in the hospital until I get lungs, or I don’t. I just don’t have too far to go before I won’t be able to get enough oxygen at home. So, you might say, I’m paranoid. I’m paranoid about germs and when I get sick, it’s so much more than just having a little cold. Thankfully, only one day of a fever etc. The trouble is I get better and I think I’m recovered, and then it seems to come back. The medicine the transplant center gave me to help with the cough is helping. I still cough a lot though. I’m so tired all the time because I rarely sleep well. But, with the medicine, my coughing fits aren’t quite as long. I haven’t coughed so h...

We added another new HPSer to the HPS patient registry. This puts us at 87 to go on the Hundred People Search - H.P.S. Keep up the outreach! 

We have added a new member to the HPS registry. This puts us at 88 to go on this year's Hundred People Search - H.P.S. 

This past Monday I was on the HPS Conference Planning Committee video conference and my phone rang. It was Inova Fairfax Hospital. Every time I see that number my heart falls into my feet. It isn’t that I don’t want a transplant. It isn’t that I wouldn’t be thrilled to get the call. But, when that call comes, I know we will be embarking on a whole new medical saga and the road can be rocky. Surgery isn’t the only scary thing. Getting a transplant isn’t a cure. It’s trading one lung disease for another in hopes that, at least for a while, you get to be healthy enough to have a somewhat normal life. But, we are not replacing auto parts here. It isn’t a sure thing. It might not work. So, getting that call is exciting, but super scary too. When you first get listed, you may know it is unlikely to get a call, but still, you are on constant alert for the ring of the phone. Nine months in, life goes on. You do your day to day things and try not to think about it too much. At any moment this c...