Thursday, March 19, 2015

Get Your T-shirts Now!

Paul and I have created a t-shirt so everyone can share the #TeamTelford spirit while I wait for my call for new lungs. I would love to see you and your families sporting our spirit wear across the globe!  The t-shirts are all white and I think there is a variety of styles to choose from. We chose to keep the price point low since you will be paying for shipping costs as well. We are not doing this to raise tons of money, we are doing this because you asked for this and it makes me happy to know I have the love and support of my family and friends all over the world. 

The shopping window is narrow. You must order your shirt within the next 10 days.  It takes about 2 weeks for domestic orders to be received and about 3 weeks for international orders to be received after the end of the campaign. Everyone should have their shirts by the end of April!  The last day to buy t-shirts is Wednesday, March 29, 2015. 

Don’t delay. Order now!

Think Pink Lungs!



Think Pink Lungs Love!

Team Telford is at it again. I got an awesome card from my cousin (a Telford!) via snail mail. I know, I know, snail mail is overrated right? Nope! It was perfect and unexpected and marvelous.

My first Think Pink Lungs support card. I'm thinking about starting a wall of love at home until I get my transplant. So if you're feeling inspired to send a card, I will gladly love it and add you to my wall of love.

Now for a health update. Well, I don't really have one. And that's a good thing. I feel stable. I'm tired a lot so I try and nap, sometimes it works, sometimes it doesn't. I watch a lot of movies and shows on TV and Netflix. Since the kids are home from school this month they promised to take me on my half mile walk every single day. We've made it most days, even when I didn't want to go. They even carry my oxygen tank for me, and bonus!, the dog gets a walk too.

Think Pink Lungs!

Wednesday, March 04, 2015

Start Your Engines!

And we're off to an amazing start on this Wednesday afternoon, March 4, 2015. Here is my update:

Hello Friends and family!

This sure was breaking news fast. My insurance approved the surgery and as of 2:30PM today, Wednesday, March 4, 2015 I am on the list for a double lung transplant with a Lung Allocation Score of 43.1389. That is a very competitive score. People get calls with scores this high. I’m a little shocked but I’m very excited. 

This is excellent news! We are on our way. 

Think Pink Lungs! 



Tuesday, March 03, 2015

We're One Step Closer!

I sent out an email update about my road to getting onto the double lung transplant list at Stanford this morning. I will cut and paste it below so you can all follow along.

Hello Friends and Family,

I received a phone call from Stanford this morning. Yesterday, Monday, March 2, the team at Stanford decided I am a worthy candidate for their double lung transplant program and I have been accepted! 

Currently my Lung Allocation Score (LAS) is 35, which is a pretty moderate score for someone sitting at home doing as well as I am. Stanford has been performing many double lung transplants since January 1, 2015, almost one per week. One gentleman who was listed on January 23, 2015 got his lungs on February 23, 2015, one month later. The general caveat is, average wait time for lungs at Stanford is 9-12 months, but without saying so, the coordinator made an impression on me that I could end up with lungs sooner than 12 months from now.

People waiting for lungs in my geographic area only include people at Stanford and the University of California at San Francisco (UCSF).  On any given day there could be an average of 10-20 people in the O blood type (I am O+) waiting for lungs at these combined hospitals. The good news is, my lung cavity is of larger size than we thought, due to air trapping, giving me a bigger, what they call, barrel chest, from my sick CF lungs. This will open up offers from donors of “normal size” rather than waiting for lungs from a more petite donor because I have the room. Petite donors are more rare, but not impossible. 

The next step is insurance approval which takes anywhere between 7-10 business days. After the insurance approves the surgery I will be called and we will talk a little bit about my oxygen usage, as I’m using more than she calculated, and this will boost my LAS. I will send out another email once I am officially on the list for a double lung transplant at Stanford University Hospital. Right now we are still in a holding pattern and I am not on the list. 

This is great news today. Things are moving forward. I am very pleased. You heard it here first!

Think pink lungs!