There is a new method for lung transplants that is being tested in the United States. It is called “Ex Vivo” an outside the body technique capable of continuously perfusing or pumping a bloodless solution containing oxygen, proteins and nutrients into injured donor lungs. It is a method of restoring and repairing donor lungs that may have sustained damage or may not be suitable for transplant. Currently only about 15%-20% of donor lungs are acceptable for transplantation. With this technology it may help in the future for those waiting for transplant. Here in the US, it is still in the testing stages with the hopeful approval from the FDA.

NewYork-Presbyterian Hospital/Columbia University Medical Center is one of the centers testing this process. Their local news talked about the process. Here is the link, please note it is graphic. ABC News

Yesterday I asked Dr. Marshall Hertz, the director of the lung transplant program at the University of Minnesota, his thoughts about the ex-vivo and if the U of M will one day get the  opportunity to use the device. There are definitely staying updated in the progress and outcome of testing results. Maybe one day this will help improve the lung transplant waiting list.

This is another video I find fascinating. It is amazing to watch lungs breathing outside the body Ex Vivo in Toronto

Today I am honored to be featured in the cystic fibrosis monthly newsletter:

Great news arrived today: Starting today, on Facebook, you can add that you’re an organ donor to your timeline, and share your story about when, where or why you decided to become a donor.

Here are the instructions: From your timeline, begin as you would to update your status. In that box, there is a button that says “Life Event.” Click that, and then select “Health and Wellness” and choose “Organ Donor.” And make sure to click on the “Officially Register” link to make your decision to be a donor official by registering in your state. It’s that easy! Please share this post with everyone you know.

This has already had an impact on Minnesota’s registry. As of this afternoon 119 new people registered to become an organ donor. On a usual day there are only about five. Keep spreading the word!

Here is a video from ABC News explaining how to sign up and other videos where organ donation has touched their lives. ABC News Exclusive: New Facebook Tool Helps Organ Donors ‘Share Life’

Remember to watch ABC’s Nightline tonight at 10:30 CST for a half hour special on the importance of organ donation.

I am looking forward to watching this tomorrow night! Tune in to ABC’s Nightline tomorrow night at 10:30 pm in Minneapolis on channel 5, to catch a special on the importance of organ donation that features a cast of Mayo Clinic patients and doctors. Check out the video teaser from Nightline anchor Bill Weir:

I have mentioned how sinus play an intricate part with cystic fibrosis. The sinus are very important to keep clean and clear. What seems to be in the sinus eventually ends up draining to the lungs which can cause a infection. Some CF patients require a little more involvement when it comes to their sinus. Sinus surgery is sometimes an option to get the clogged thick mucus out the the sinuses. Good maintenance is very important and there are different methods. For instance a nasal wash like a neti pot or what I use a nasal wash bottle. I fill the bottle with warm distilled water and mix in a powdered solution. The lean over a sink and squeeze. For me, I like the bottle better because I can control some pressure. Sometimes I need that extra pressure to get things flowing. My neighbor who suffers from severe allergies, he uses the bottle too, we joke and call it the “nasal enema”!

Another method is having my ENT (ear, nose, and throat doctor) use a scope (a device with a very bright light to see into the sinus) and squirt an antibiotic solution in to the deeper areas of my sinuses that I cannot reach on my own. I call these my “nose squirts”.  It does not hurt but does taste a little like a band-aid. The purpose it to keep any infections in my sinuses at bay so they don’t drain into my lungs. It varies between patients how often this procedure is done. For myself, I have an appointment every three weeks. Here is a quick video if you would like to watch me getting my “nose squirts”.

As I try and get my blood sugars in a little better control I have noticed I have lost a couple of pounds. I can’t afford to lose any weight while I am waiting for transplant. I am a petite person so every pound counts. Most people who have diabetes check their blood sugar two hours after eating, in order for me to get an accurate reading I have to wait three hours. It is making it a little harder since I eat more like a cow, I like to graze! It seems that while waiting the three hours I am missing a couple of my snacks. My diabetic nurse and I made some changes last week and I think we have finally figured out the correct settings for my insulin pump. Now the setting are on track I can concentrate putting back on the couple lbs that I lost. I was told to drink Ensure or Boost like older people. Have you ever tasted one of those? I don’t believe they are the most appetizing in flavor. I have come up with a milkshake that I believe will put other high calorie drinks in the back of the cupboard.

My milkshake consists of: 2cups Haagen Dazs vanilla ice cream, 8oz half and half, 1 packet of Carnation Instant Breakfast, Carnation Malted Milk, and chocolate syrup. This milkshake is 1800 calories and delicious! Whenever I make a shake, Travis asks me “Can I lick the spoon?” I can change it up many ways like adding frozen fruit, different flavors of instant breakfast or syrup, and even peanut butter to really add some calories. MMmmm!

Saturday we were able to attend the Donate Life Day celebration hosted by LifeSource. A beautiful brunch and award presentation at the Hilton by the Mall of America. Three volunteers were honored with the Volunteers of the Year Award. My friends Bill and Holly were two of the recipients. Congratulations to all the volunteers and donation advocates. It was a very emotional and inspiring morning visiting with donor families, members of the medical field, LifeSource employees, and transplant recipients along with their families. Anabel Stenzel from the documentary “The Power of Two” was the keynote speaker at the event and was amazing. The room was filled with emotions and hope all morning.

Later that night we met up with Anabel for dinner. We had a wonderful time and talked for hours. She was visiting from California and had told us she was doing some sightseeing. She had mentioned that she had come across a detour. Anabel had the pleasure of experiencing one of the two Minnesota seasons. Not winter but construction!

Me, Travis, & Anabel

Tomorrow, April 20, 2012 is National Donate Life Blue and Green Day!

If you would like to support organ, eye, and tissue donation in the initiative to have 20 million new registered donors in 2012 by drawing attention to this lifesaving decision both locally and nationally, please wear BLUE and GREEN tomorrow. Share with others why you are wearing Blue and Green – organ donation saves lives!

Create your best blue and green look and post it to the Donate Life America Facebook page for a chance to win $100! Here is a short video with some ideas Blue and Green

Olivia, Rosie, & Grace

I had an appointment today that was on the University of Minnesota children’s campus. Knowing I was going to be in the area of the Amplatz Children’s Hospital, I thought I would bring my dog Rosie to visit Grace who is waiting for a heart transplant. Rosie has been in a hospital many times. Whenever I am admitted, Travis always brings Rosie for a visit. I know how much it means to break up the monotony of a hospital stay. As in this picture you can see the smile on not only Grace’s face but her sister Olivia too!