Tuesday, July 29, 2014

Happy news in HPSland

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, can easily be taken off the table. 

Knowing you have HPS makes it possible to manage the potential bleeding risks associated with child birth. It is not knowing that can result is scary and life threatening situations. Celebrating the birth of a child in our community is an affirmation of life. It’s a passage of normalicy that we all treasure, besides just treasuring a sweet little new life in the world.

Especially poignant to me right now, however, was Julio getting his lungs. Julio’s older sister died from HPS. His mother and other siblings cared for her in her last years and his family have been through this process now several times. Julio was getting very sick and we were all very worried for him. These lungs came just in time! 

It is our 14th known HPS lung transplant. Every transplant that happens helps to pave the road for all of the rest of us who will need them in the future. The more of them we have, the less powerful the argument that HPS poses too high a bleeding risk for lung transplantation. We’ve now had 14 transplants in three different countries. It is a lot to celebrate!

Still, lung transplants are not a cure. It is more like trading one lung disease for another one. Not everyone can be a lung transplant candidate. We are all still dreaming of the day when we find a treatment that makes lung transplantation unnecessary. Now, that will be one heck of a party!!!!! When that day comes, I’d be happy to do the “I’m too Sexy for my Lungs” dance!!!!

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