Living on the frontlines

  What started as a way to share news about HPS and what it is like to live with Hermansky-Pudlak Syndrome has fallen apart badly! There are a lot of reasons for this. Some are related to health. Some are related to time. And some are related to mental health. Finally, the last obstacle was technical. I lost access to my blog. Every time I started to work on regaining access, something interrupted the process and I’d have to start all over again. Before you say it, I know. A blog is so old school. Haven’t you heard of a vlog Heather? Or maybe TikTok? I know my limits. I have a great face for radio. I’m not particularly eager to film myself. When I do, I feel I need to spend extra time putting on makeup or fixing my hair. Yet, often when I have the time to do something like this, it is early in the morning or late at night. I don’t want to “get ready.” I’m having a hard enough time squeezing this in without staging myself. Grin. I’m trying to start with small goals. Right now, I...

 It's been a rough summer and fall for me, so I am very behind on posting updates. More on that later. We have added eight new HPSers to the registry in these past few months, which puts us at 80 to go on this year's Hundred People Search. We are behind where we usually are, but given the sort of year it has been, I think that is to be expected. 

We have added two new HPSers to the registry. This puts us at 88 to go on the Hundred People Search (HPS). Both of our newest members are from outside the United States. It is so important to find our fellow HPSers overseas, as well as in the U.S. We don't want to leave anyone behind. And, who is to say the cure will be found here? There are brilliant scientists all over the world. The HPS Network currently has a program to reach out to scientists from around the world interested in HPS research. Often they want to know if we have HPSers from their given countries in our database. We are a rare disease. We can't afford to have our efforts separated by borders. 

It has been a while since I've posted an update. Sometimes it takes time for people to work their way through the testing phase etc. We have added four more new HPSers to the registry. This puts us at 90 to go on this year's Hundred People Search (HPS). Outreach is harder during the pandemic. We can't attend conferences or hold conferences and outreach events. It is a worry because there is actually a lot going on in research just now, and soon we will really need all HPS hands on deck to push things forward. We need to get creative! 

When I was in elementary school, if an adult had asked me what I wanted to be when I grew up, and I’d given them an honest answer, I’d have told them I wanted to grow up to be a pioneer in the later half of the 1800s. I never gave this answer to inquiring adults, time travel being impossible. It was, however, what I really wanted to be. I LOVED the Little House on the Prairie series. I read them over and over. It didn’t hurt that I was lucky enough to touch this era of history, literally touch it, pretty often. My dad was stationed at the Air Force Academy then. Our family spent many weekends on four-wheel drive roads in the back country of Colorado. The mountains were littered with “ghost towns” from the 1800s gold rush. If you went to the towns (and the mines) that could only be reached with an off-road ready vehicle, or more remote still, only by foot, there was so much to find. We were like amateur archeologists. We found town buildings and cabins, some still creakily holding on t...

I’ve often thought how lucky I am that I’ve gone through life able to avoid direct experience with any major negative world event. I’ve been blessed to have a front row seat to several world events, but not negative scary ones. If you look at history, the usual time between things such as wars, and it really is quite extraordinary. Yes, we’ve been at war, even attacked on Sept. 11, 2001, but I’ve never really felt my life was in direct peril – not really. I’ve never had to think about going without anything I could afford. I’ve never worried that my house would be bombed, or that I’d be kept a prisoner for some, hopefully, unjustified reason.  I still count myself very blessed in this respect. History has marched on though, and it might just have caught up with me.  For these past few months our world, yes the whole world, has been experiencing a pandemic. It has impacted every aspect of our lives no matter where we live. Personal liberties have been curtailed for the good of ...

Today we added two new HPSers to the patient registry. This puts us at 94 to go on the Hundred People Search. Please keep up the great outreach! It is our biggest need right now - to grow the database and ensure no one with HPS is left behind. 

It's that time of year again! It's time to kick off the annual Hundred People Search campaign - our challenge to the HPS community to help us reach out and find those affected by HPS who either don't know about the HPS Network, or don't know they have HPS.  We all understand how scary having HPS can be. But consider what is really scary - having HPS and not knowing it. Think about developing pulmonary fibrosis and receiving a diagnostic open lung biopsy that causes excessive bleeding. Now that's scary, potentially deadly and completely avoidable. What about finding yourself in an auto accident. You do have injuries, but the doctors at the emergency department don't think your injuries are so severe that they should bleed this much. They can't explain it, but they can't make the bleeding stop either and the situation grows more dire with each passing moment.  These are just a few of the things that can happen when you have HPS and don't know ...

We've added another person to the HPS registry. This puts us at 78 to go for this year's Hundred People Search. We are a bit behind where we usually are so close to our count starting over again. 

I stress a lot about laundry. I stress about it because I share one washer and dryer with nine families in my building. I can’t always do my laundry when it’s convenient for me. I also stress about it because I have this nightmare scenario in my head that something will happen, I’ll get admitted to the hospital again, and I won’t have any clean clothes to have anyone pick up. People I don’t know well enough to be aquainted with my underwear might have to get it from my apartment, wash it, and bring it to me. Over these past few years my brother, for example, has been in my panty drawer way more often than any brother should. And so it was the day before Halloween this year. In Sept I was doing the best I’ve done so far post transplant. I could go into the city, or anywhere, and not worry that I wouldn’t have the stamina to do what I needed to do. I was still getting easily out of breath with stairs and hills, but I was doing great. In Oct. it seemed like there was a slow decline, so sl...

Where have all the staffers gone? It seems like that should be the line of a song. Grin! I just wanted to post a little about what is going on behind the scenes at the Network. I know those of you who actively follow the HPS Network’s social media etc. or who have needed things from us lately, might have noticed we’ve been less active online and maybe not as quick to respond to non-emergency issues. There are a lot of times things are quite busy in the HPS Network offices, but we can’t always elaborate about everything happening. It isn’t that it’s a huge secret exactly. It’s more the boring nuts and bolts of keeping the ship afloat and the trains running (hopefully at least mostly on time.) There are times we are working on things that just can’t be announced yet for lots of reasons. This is just like any other business. Sometimes things fall through, or developments can’t be announced until all the players are ready. Sometimes we are just so busy working to move the cure forward, we ...

We've added a new HPSer to the HPS registry. This puts us at 79 to go this year. We had a number of new people coming in, but it has really fallen off through late July and August. Thanks to everyone who is keeping up the outreach. We don't want to leave anyone behind - especially with all the exciting things happening. 

(Note: actually posting this a few days later.) Yesterday it was one year and six months since my single lung transplant. In some ways it feels like yesterday, and in other ways it feels like so long ago. In the beginning, post transplant time starts to take on strange properties. It feels like everything moves so slow. You move slow. You think slow. Everything seems complicated and foreign. You’re so anxious to get your life back. You’ve got all these things you were looking forward to doing after your transplant and it feels like you’ll never get there. There are still things on my post transplant wish list that physically I can’t do, but even now, even a year and a half later, I’m still making progress. There were some complications that slowed things down early on – although my team probably wouldn’t put it that way. They’d tell me to quit comparing my recovery to anyone else; we’re all different and there isn’t a schedule to this. Okie Dokie. Got it – NOT. I’m not wired that way. ...

With everything truly important on my list of things I need to blog about, we’re going with a really important one today – Star Trek! I don’t think most people would make me for a trekkie, but I’ve always loved it. In general, I’m not a huge SciFi person, but I loved/love Star Trek because of its soul. It isn’t just space battles and space monsters. It isn’t just good vs evil. Star Trek used its universe to say things that, in our universe, might be sensitive. It allowed/allows us to look at ourselves in the safety of another place and time. In such a polarized environment, we could use a little more of that. A few months ago I finally ditched my Netflix subscription and added CBS All Access to my Amazon Prime account. (Might be better named CBS Some Access, but that’s for another blog.) I was dying to see Discovery, the new Star Trek, but hadn’t signed up for CBS because my budget is tight. Even a few extra dollars can matter. But, I found I was watching a few series on Netflix, and t...

We've added a new member.....this puts us at 80 to go on the Hundred People Search - HPS. 

We have added another person to the HPS registry. This puts us at 81 to go on the Hundred People Search. May no one be left behind! 

We added three new HPSers to the registry last week. This puts us at 82 to go on this year's Hundred People Search - H.P.S. 

This week I celebrated the second birthday since my lung transplant. When I catch myself having a thought about how old I’m getting, I remind myself how hard I’ve worked to get this old. It didn’t just happen. It’s perhaps unusual that you can feel like the mere act of existing is such an achievement. I worked hard, but so did so many people along the way – a LOT of people. This year one of the exciting parts of my birthday was getting to send the oxygen equipment away. The transplant clinic was leery to let me send it away for a long time. They were worried I’d have another complication and require it again, even if only for a short time. It’s been annoying to me because I haven’t needed it (with the exception of a few days last June when I had rejection) since I’ve been home. Still, I’ve had to keep paying for it every month. Plus, I live in a tiny apartment! This equipment takes up valuable space that is already in short supply. On Friday, when Carlos, the guy from the oxygen compan...

We have added another HPSer to the registry. This puts us at 85 to go on this year's Hundred People Search (HPS). Keep up the outreach! 

We added a new person to the HPS registry this past week. This puts us at 85 to go on the Hundred People Search (HPS) this year. Keep up the great outreach!