Saturday, July 11, 2015

My First Dry Run

Hello Family and Friends,

I wanted to give a more complete update about the last 24 hours and the whirlwind we like to call a “dry run.”  

I got the call at 1:42AM and without asking too many questions I said, “Yes!” to accepting the lungs. They were from a young(er) male, known IV drug user and he had tattoos, this made him “high risk.” I tried to get more information about his age and where he was from but no one would give me that many details. I do know he was from out of my region. The west coast region is very large. I know Stanford sent a team of doctors and residents on a plane to determine if the lungs were satisfactory. After initial tests pointed to yes, further tests gave more and more disappointing results that could have resulted in me being hospitalized with sub-par lungs for months and maybe recover, maybe not. They recommended I not take the lungs and I respect the doctors at Stanford so I agreed. In reality, I don’t think I had a choice.

What a dry run looks like:

We arrived to what seemed like an empty hospital at 5AM on Saturday morning. No one on the phone told me where to go. I asked if I was to use the main entrance and he said yes. So I did, but no one was there.  I walked and walked around until I found somebody in the emergency department. They were able to look my name up and see that I was supposed to go to the area of the hospital called C1, which is a hall of rooms specifically designed for pre-op, and post-op, if you’re going home the same day. That would not be my case, of course, if I had the surgery. I would have been headed to the North ICU. 

I put on a hospital gown immediately and was asked my allergies to medications and asked for a list of my medications. There was a lot of confusion about drawing my blood, as I told them I have a medical port-a-catheter implanted in my chest for a reason, they are going to have to draw the blood from there. I knew it would be a lot, and they wanted to place a regular peripheral IV instead. I insisted they access my port first. It turned out to be a good thing. 

The Fellow Cardiothorasic Surgeon assisting in my operation was Dr. Choi. He came to talk to me and had me sign consent forms. He said he’d be operating with the attending doctor, Dr. Ha. I had never met either surgeon, and never did get a chance to meet with Dr. Ha in the operating room. After taking my blood and doing some usual things like an EKG (testing my heart) and a skin check to check for redness or wounds all over my body they raced me in a wheel chair down to xray, because the OR was ready for me. 

We got to xray and they had to call someone because we couldn’t find anyone. It was still so early in the morning. After the xray, some of the OR staff picked me up in my wheelchair and I was raced to the OR. They brought me into the OR and gave me some drugs to relax me. Me, being me, the drugs didn’t do anything. We have a theory that because I’m a redhead I need to be knocked out like a heavyweight champion. So they gave me some more drugs and that made things a little floaty for awhile. That’s when they got started on my arterial line. I’ve had many arterial blood gases but this is an IV line directly into an artery (not a vein) in my wrist. It’s a very sensitive area, but thank god, they do numb me first. 

The anesthesiologist used ultrasound guidance to try and find a vein for my IV (the one they wanted to put in earlier).  Even with the ultrasound she had a really hard time but she was able to do it in about 30 minutes. Then it was hurry up and wait. I waited and waited, they turned on music for me. They didn’t want to put me to sleep until they were sure the lungs were on the way. 

After about 2 hours, around 9AM, we were told the lungs were not suitable for transplant and I was going to be going home. I went to recovery for about an hour, where they fed me some crackers and juice because my blood sugar was a little low, and they did more tests. My blood pressure was really low, but that’s normal for me after having narcotics in my veins. I wasn’t dizzy at all, so they removed all my lines, flushed my port, and led Paul to the room with my clothes so I could get dressed. I was escorted out around 10AM and we stopped to eat after that whirlwind of an 8 hour morning we just had. 

We got home around 1:30PM to find my mom had finished all the laundry from Paul and the twins’ trip to the UK. What a super mom! Paul and I drew the shades in our room and passed out for three hours. We were tired. 

But we are ready. We are ready for the next go, whenever that may be. 

I can’t thank my donor today, enough, and my donor’s family for making the choice to donate organs. What an amazing day it was. It just wasn’t my right “Breath Day.” 

#TPL
#Team Telford

Love,

Tara

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! 

http://teespring.com/teamtelford

Think Pink Lungs!

Love, 

Tara


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!
#TeamTelford




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! 

Love, 

Tara

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!

Love, 

Tara