Living on the frontlines

The fall and Christmas season are our biggest fundraising times of year. That is true for a lot of non-profits. Maybe people are in the giving spirit. Maybe they are thinking about tax deductions at the end of the year. Whatever it is, thank God for the donors, and thank God for the HPSers and supporters that help us with fundraisers! There will be no cure without all of you! The HPS Network is growing and evolving. The opportunities for us out there to get closer to treatments, and a cure, are so many that we can’t even take advantage of them all. But, our budget has to keep up. Soon we will be facing some hard choices. We are at a point that we need a full time nurse who is able to work on center recruitment and families who need help. Donna just can’t do it all. All of our part-time staff works for way, way, way under market value for their talents and positions. We are so lucky to have people so vested in our cause, and for whom making a difference is so important, that they are wi...

This week I had my first appointment at the transplant center. I was so nervous! I don’t know why as I knew it was pretty much a meet-and-greet and all they would do was a six-minute walk and pulmonary function tests – but still, there’s a lot riding on this! I think the appointment went as well as it could have! My pulmonary function tests were unchanged. Actually the numbers were up a tad, but within the margin of error so officially it is unchanged. Still, I like being on the upper end of that margin more than being at the lower end. My six-minute-walk was pretty much what I knew it would be. I just did one for pulmonary rehab and I walk all the time, so wasn’t expecting any major issues there. I was thrilled that I got to see Dr. Nathan. He runs the lung transplant program, and I know him from the American Thoracic Society. I’ve taken his class on diagnosing pulmonary fibrosis (not for CMEs since I’m not a doctor) several times. I’ve been joking with him for years that I was comin...

We have added another HPSer to the patient registry. This puts us at 74 to go on this year's Hundred People Search (H.P.S). 

Things are going well after a bumpy period. The good news is I got into the maintenance pulmonary rehabilitation program and so was able to keep my little Inogen concentrator a bit longer (and be more mobile). I am so grateful as it makes a huge difference in my independence and ability to have something more similar to a normal life. I’m also grateful to the pulmonary rehabilitation program at Inova Fairfax. They’ve been awesome!!!! I had a very nasty upper respiratory infection and double ear infection a few weeks back. That was scary. At this point, any infection in my lungs can cause me to lose ground I don’t get back. I needed to wear oxygen more than is normal for me. Normally I can walk around my apartment without it. When I got the infection, I couldn’t even walk from my bed to the bathroom (a few feet) without oxygen. Praise be to God I’ve been able to get back as much function as I had before the infection. I’m not sure what my PFTs or CT will show, but as far as what I can t...

The HPS Network hosts an annual Christmas Concert fundraiser in Oyster Bay the first weekend in December. This year families with HPS from around the world can join the holiday fundraising efforts by signing up to host an HPS Christmas Concert event of their own!  A professional broadcast quality DVD of the concert in Oyster Bay will be produced and ready to ship out by Dec. 9th. The DVD can be played at a fundraising event anywhere during the holiday season. If you let the HPS Network know you are planning an event by Nov. 24th, we will put a shout out recognition to your group on the DVD.  In the past HPS families have done things such as:  • Host a Christmas tree decorating party while playing the concert. A basket for donations was simply placed at the front door.  • A children’s hot chocolate party. The DVD was played for the children while they sipped hot chocolate. The kids brought spare change to put in a jar at the event.  Make it easy and ...

We've added a new HPSer to the patient registry. This puts us at 75 to go on the Hundred People Search (HPS).