Living on the frontlines

We added a new HPSer to the patient registry this morning. This puts us at 91 to go on this year's Hundred People Search (H.P.S.) Keep up the great outreach everyone!!! 

Today was a great day in HPSland. One of our members had her first baby, a little boy! Another member who has been on the lung transplant list a long time got his new lungs last night! I’ve been on cloud nine all day! I had intended to work on some HPS writing that needs to get done, but spent most of the afternoon on the phone with members. That is important work to get done as well, but it doesn’t feel like work because I enjoy it so much. They aren't just members - they are all personal friends I treasure! I don’t know if the people having these great events in their lives truly appreciate how deeply and how much they mean to many of us. One of the first questions I always get asked by a woman recently diagnosed with HPS is: Will I be able to have children? There are a lot of things women with HPS, as women with any myriad of medical conditions, might want to consider before deciding whether to have children. The concern about whether it is physically possible and safe, however,

Last Friday I had my first repeat of Pulmonary Function Tests (PFTs) since being told I need a lung transplant. You can imagine, I was quite nervous about them. Along the way I am making all kinds of decisions. So many of them seem like gambles, yet they are literally life and death. Luckily my PFTs were a confirmation that, for now, I am making the right decisions. The plan can still change at any time, but for right now, we are just pressing ahead with handling some more immediate issues I have to get under control before I see the transplant center. As for the results, I must confess, given how much better I’ve been feeling, I was secretly hoping for a miraculous improvement that would wow everyone. What I got was a mixed bag, but the important part is that, for now, I have stabilized. My forced vital capacity (FVC) fell three points, but my DLCO (the bigger problem right now) went up three points. Machines can vary from hospital to hospital. For some reason, my numbers are always l

This morning we added a new HPSer to the patient registry. This puts us at 92 to go on this year's Hundred People Search - H.P.S. Remember, the most dangerous thing about having HPS is not knowing it. 

I am behind on my e-mails and just found a Hundred People Search new person I had not counted yet. So, this puts us at 93 now. Keep up the great outreach! 

This is a question no one has actually asked me directly, but given a few comments, I think some of you are wondering. I’ve been working really hard lately at walking as much as I possibly can. I’ve been posting the walks to my facebook page. The encouragement I have gotten from friends and family actually is pretty motivating. I think some, however, wonder how it is I can walk three or more miles and need to move to get a lung transplant. Let me clear that up for you! Grin! For starters, I don’t need the lung transplant tomorrow. The issue is that my lung function has fallen enough that there isn’t as much “wiggle room” before advancement in my disease will cause me to need a lung transplant. As I’ve learned lately, moving is NOT EASY – especially when you haven’t done it in 12 years. Getting listed as a person with Hermansky-Pudlak Syndrome involves not just the many medical issues, but also lots of social support issues and services. If I were sicker, it would be harder to have the

Wow, I owe some of you an apology. For the longest time the only comments the blog had been getting were utter spam. Thus, I wasn’t really checking the comments. To my great surprise today when I went in to clean out the spam, I found some lovely comments from many of you.. Thanks so much for all the well wishes! I set the comments free and I’ll start looking more carefully.

Third load of stuff given to charity as I work on my move to Virginia.  Stuff I sent with mom to store.  Even though my move to Virginia had to be moved back, I’m still very actively working on getting ready to move. Part of me is a little glad for the delay as it gives me time I really need to get ready. When I thought I was moving in July, the anxiety about how to get organized in time was getting a bit much!!! This past week my mom has been visiting me from Colorado. While I have given away three loads of things to various charities, I do have some things that are sentimental enough to me I hate to get rid of them, even though they are not exactly practical for living in a smaller place in Virginia. I’ve spent the past few weeks packing things like the nested tea pot Peter gave me when I visited Hong Kong years ago. It is one of those items that just sits on a shelf and looks pretty. Since I won’t have an office when I move, I need the shelf space for more practical things

One of the sweetest questions I get asked these days is, “How can I pray for you?” Thank you so much for all of the many, many prayers. Please keep them coming. This journey will likely be years, not months. It’s more of a marathon than a sprint. It will have lots of ups and downs along the way, and I’ll need all the support I can get. I am surprised by how much things like little comments on facebook mean when you’re really in a dark place. On the whole, I think I’m doing a good job of keeping my spirits up, but that isn’t to say that there aren’t days that are just, well, crappy. On those days it’s the support of all of you that help to keep me focused on moving forward and trying not to dwell on the losses. There is a lot going on that could use prayer right now. Please pray for my family. This is a stressful time for them as well as for me. Not knowing exactly when I’ll be moving and when our plans need to be put into action turns my stomach. I know it isn’t easy on Ryan and Sara a

Some of the crowd at the fundraiser Homers Coffeehouse held for me. I want to once again thank all of the people who have pitched in to help make my upcoming move to Virginia possible so that I might try for a lung transplant. I might not be a child, but it truly takes a village to make lung transplants happen. That’s why transplant centers evaluate your support system as part of the decision to list you for a lung. They want to know if you will have the physical, financial and emotional support to help deal with the roller coaster process of getting, and then maintaining, transplanted lungs. Not only have the fundraiser and the donations helped financially, but they will help demonstrate to the transplant team that I do have a LOT of people out there rooting for me. So, here’s a big THANK YOU again!