This last Saturday, Travis and I attended the Cystic Fibrosis Gala. I was so pleased to be able to be in the audience. Travis and I have either volunteered or attended the event for over a decade. But sadly, last year we were not involved. Although, I’m not sad for the reason of missing out on the event. I had just received my double lung transplant a couple months prior. My body was too immunosuppressed to be around a large audience considering seven hundred and fifty people are in the crowd.

It is amazing to spend five hours with this group of individuals that collectively have the same thing on their mind…a better life for those that suffer from this disease and to one day find a cure so that CF stands for “cure found”. Spending the evening at the Hyatt downtown and to be part of the dynamic energy in the ballroom is incredible.

A couple of highlights of the live auction items were, a one day fishing excursion on Lake Minnetonka, sold for $30,000! Or, the LynLake Brewery donated an item where you get to brew your own beer with the brewmaster, name your beer, have a party for over one hundred people, and the brewery adds it to their tap list for sale to customers. That item sold for $15,000! And then they ended up donating a second one for another $15,000! During the bid for a cure portion of the night, someone raised their hand and donated $50,000!

With a silent and live auction, touching stories, and an abundance of giving people, the Minnesota/Dakotas chapter of the CF Foundation raised over $860,00!!! All this money is going to research to help those living, struggling, and suffering from this awful disease.

There was a couple of very touching videos but what hit my heart the most was when the nine year old boy and his seven year old sister spoke. They spoke so eloquently about both of them living with CF. They spoke about the heartaches they deal with. For instance, the little girl watching her friends swimming behind the glass because she gets sick when she enters the pool because her lungs can’t handle the smell of the chemicals. They spoke about the difficulty of their daily regimen. He spoke about his dream of becoming a baseball player.

At one point they showed a video of the brother doing a treatment. It broke my heart. He was crying his eyes out because he hates CF so much and hates how he has to be attached to the vest machine for hours every day. It was hard to hear such young children cough like I used to before my transplant. So many dealing with this diagnosis still don’t even make it to their teenage years. It is still a children’s disease.

Here is a video I had posted a long time ago doing my vest treatment.

I no longer have to be attached to this machine. It is a reminder how lucky I am. First of all, I lived into my thirties before I needed new lungs. Now, I have this second chance of life with my new pretty pink lungs.

Please, tomorrow be extra thankful for what we are blessed to have. The gift of life. Remember those that are no longer with us. Have a wonderful and Happy Thanksgiving.

Do you remember these photos from last December? Last year, thanks to your help, I was able to deliver 283 toys to Toys for Tots during my annual birthday delivery. I am lucky enough to be celebrating yet another birthday coming up. That is all because of my donor.  I would love to repeat the donation and I am willing to be your personal shopper and delivery girl again this year. Since I have always delivered on my birthday, I have until December 16th to collect as many toys or cash donations (I will find as many toys possible with your money) and deliver them. If you have toys or cash that you would like to donate to the cause, please contact me at nikkisnewlungs@gmail.com

Catching you up from the last week and half. Two weekends ago we went up north so Travis could go deer hunting. Thanks to our friends, Cedar and Julie, we stayed with them at her parents house and hung out with her family. Thanks for the hospitality Tom and Jackie. While the girls relaxed at “crazy deer camp” as Julie’s mom wrote on the chalk board, the boys were in the deer stands freezing their tooshie’s. The group did find a few deer but Travis didn’t spot any. Not only did he not see a deer, but he didn’t even see a living animal until the second day, when he finally saw two birds!

In between seeing a bunch of my girlfriends last week, I went radioactive. I participated in a study for my ENT (ear, nose, & throat) doctor. She squirted a nuclear liquid in my nose. I had a couple of scans of my sinuses to make sure it was properly placed and to get a baseline. I then went to a room and laid flat in a bed for eight hours. After spending the day in bed, they took a few more scans and sent me home. I have talked about how sinuses cause issues with cystic fibrosis patients. The study will look at how mucus drains to the lungs from our sinus cavities.

We Day was on November 12th in Minnesota. We day is a youth empowerment event that encourages youth to take action on local and global issues. I want to mention this because my niece, Lauren, was one of two students chosen to attend the event from her school. Way to go Lauren!

Sayonara Kara! Last Thursday night we went to a farewell party for a dear friend. She has moved to Singapore for two years. She works at Lululemon, an athletic clothing store, and is going to launch the Asian market for the company. We first met Kara years ago when she used to work at the Cystic Fibrosis Foundation. We quickly became great friends. I am so happy for her and this great adventure she is about to undertake. I wish her the best of luck. I know she will rock it!

Missy, Jay, me, Travis, & Kara

Saturday afternoon, LifeSource held an event called A Donor Family Gathering. It’s a yearly event where donor families have the chance to gather with one another and share their memories and tributes to their loved ones who have given the gift of life. It was an incredible experience. I was honored to be part of a record breaking attendance of over four hundred.

The most amazing aspect was when the families were asked to say something about their loved one. They shared stories of how proud they are that their loved one gave the gift of life to others. At the beginning, one person at a time would raise their hand to speak. By the end of the hour, many families finally found the confidence and courage to stand up and say something. It was incredible.

A fellow CF (cystic fibrosis) friend who has also received a double lung transplant was in town from California. I have mentioned Isabel and her sister Anabel before. The girls are twin sisters who both have CF and both had lung transplants.  They have made a documentary The Power of Two.

Isabel was the keynote speaker at the Donor Family Gathering. She gave an inspiring speech. She talked about being on the receiving side of donation but she also touched the audience with her remembrance of her sister. Unfortunately, Anabel lost her battle with cancer last year. Isa was very proud to share that Anabel was able to give the gift of sight to two people.  Most people believe that if they’ve had a serious illness, they can’t donate life to anybody. On the contrary, the gift of organ donation can change the life of somebody who cannot see.

Travis, me, Isa’s husband Andrew, & Isa

After the family gathering, Travis and I met up with some friends to attend the Garth Brooks concert. He is such an entertainer and puts on a great show. I had seen him back in 1998 with my brother. It was just as good as I remembered from years ago. After the emotional afternoon I had, it was wonderful to spend the evening with great friends and think about how lucky we are.

Megan, me, Amie, & Kimmy

Kevin, Kimmy, Megan, Jay, Amie, Dave, me, & Travis

I’m really excited! Monday, I had a follow up with my doctor. If you recall I have been fighting a virus and last month we started a couple of different medications. I was hoping my PFT’s were going to be better this time. It turns out the meds must have worked! One of my lung functions numbers was the best I have had since back in the 1900’s!

I wondered if my numbers were going to be better. I had no problem on Sunday when I was shoveling snow for an hour and a half. I admit, I really love shoveling. Let me stop you before you ask, I don’t mind shoveling our driveway, I am not going to shovel yours too 🙂

Last year I got in trouble for shoveling from my doctor. It was too soon after my surgery to be straining my body. I just remember being so ecstatic to be able to breathe when it was cold outside and have the opportunity to shovel. It is one more reason I am grateful to have this second chance at life. All that shoveling is helping me to continue expanding my new lungs!

Yesterday, I had a busy day doing something I love. I was talking about organ donation! I was at St. Cloud Hospital in the morning, St Louis Park High School in the afternoon, and Chanhassen drivers education at night. I was speaking with my buddy Bill. We had enough time to grab a bite to eat together in between the high school and Chanhassen presentations. Thanks Bill. It is such an honor to be able to spread the message about donation with you.

Last week when we were at the Minnesota Business Magazine’s Leaders in Health Care Awards, I was privileged to be chosen to share my story as part of the program. A couple of months ago, Jake, from the magazine came out to interview me so he could produce a video. I thought my video would be one of many supporting each of the nominees. It turns out my story was prominently featured with approximately 8 minutes of the program. There were only a handful of other, much shorter videos. What a nice honor considering the audience of some of the biggest names and fastest rising stars in the health care field were in attendance.

Jake sent me a copy to share with you. Hope you enjoy it. Please note: There is a video included in this post. For some reason when I have been adding video’s lately, it has not been included. To watch it, you may need to go the actual website versus reading the email. Here is the link Nikkisnewlungs.com

Last night, I spoke at Bethel University along with a family support coordinator from LifeSource. We spoke to mainly nursing students but also others taking social work, education, and business classes. I told Travis afterwards, I was really disappointed in my speaking skills this evening, I felt like I was babbling. I tested my blood sugar when I got into the car. It was over 400. In the past, I have told you a normal blood sugar range is between 80 & 120. When it gets either very high or very low it will sometimes interfere with my thought process. It is annoying but a hazard of having diabetes. Not sure what caused the spike but my sugars are now back to normal.

Cough update, my cough sure has subsided. The medication trio I have been prescribed must be doing its job. I don’t have lung functions again until the 17th. As always, that will be the true test to know if the medication has benefited me.

There’s one problem, I am having night terrors! They are awful. So realistic. I wake up with my heart pounding and I have to realize I’m in my bed and think, it’s not real! Thankfully they don’t happen every night. I spoke with my transplant coordinator this afternoon, she called the pharmacy to ask about my issues. Low and behold, night terrors can be a side effect of Singular, one of the trio of medications I am currently taking. These side effects only occur in LESS then one percent of the population. Go figure. If there is ever a small chance of something, I am usually part of that small chance.

Sweet dreams.

Wednesday night, Travis and I were able to spend another amazing night in the presence of members from the LifeSource family. Susan Gunderson, CEO of LifeSource, was selected as a finalist for the Health Care Executive Award presented by Minnesota Business Magazine  at the 2014 Leaders in Health Care Awards.

It was an awe inspiring experience being amongst such impressive organizations, companies, hospitals, and health care professionals that improve our health care here in Minnesota. I am proud to announce that Susan Gunderson is the WINNER of the 2014 Health Care Executive Award! Congratulations Susan! Thank you for impacting so many lives. Your passion, dedication, and love for supporting donation and transplantation shines through.

To learn a little about Susan, I have taken this information off the LifeSource website. It explains why Susan is so deserving of such a prestigious award.

Impact, Reach & Lives Touched

Susan Gunderson, CEO

The next time you see Susan Gunderson, chances are she will be talking with someone. She is regularly approached by people who recognize the blue and green pin she proudly wears on her lapel to share a story, a connection, or a word of thanks. The words on the pin – Donate Life – are a simple statement that represents a profound mission.

The Donate Life pin identifies her as someone who supports donation and transplantation. What most of the people who approach her don’t know is the depth of her story. As the CEO and founder of LifeSource, it’s a story of extraordinary leadership that has brought health, healing and hope to the Upper Midwest for twenty-five years.

Perhaps her humility is what has allowed her to stand behind the mission instead of in front of it. When your life’s work is to be the steward for donation and transplantation in the communities LifeSource serves—for families living in rural or urban areas, for families devastated by loss or families hoping for their miracle—your focus is always on the future and the potential that lies within.

Thousands of families have been brought into the circle of donation and transplantation through the care they received as donor family members and the care their loved ones received as donors. Thousands more families have been brought the joyful gift of transplantation, as the team at LifeSource serves as the steward, bringing those precious gifts from donors to recipients.

Twenty-five years ago Susan Gunderson probably couldn’t imagine that the relationships she was building and the organization she was creating would have the kind of impact that has been realized. She might have dreamed it, but today, the reality is that lives were saved and families were given hope in their darkest hours of grief.

LifeSource is the link between those who suffer loss and those who await a gift, providing legacy to one, and hope to the other. When you see Susan Gunderson, deep in conversation with someone she just met, odds are that person has been touched by the legacy of donation, or the hope of transplantation.

Don’t worry about telling her your story, too–she loves to hear them all. Impact, reach and depth of lives touched: that’s just what she’s aiming for.

Last Thursday was a celebration. An anniversary celebration to commemorate 25 years of improving and extending lives at LifeSouce. It was an inspiring and emotional evening. Travis, Dana, and I were proud to be able to attend this extraordinary event.

For 25 years, the amazing organization LifeSource has not only enhanced and saved lives through organ, tissue, and eye donation but they have also comforted grieving families during the time of a loved ones passing. When families are going through one of the darkest moments of their lives, LifeSource has been there to add care, comfort and hope.

The night was also a celebration of LifeSouce’s new headquarters and memorial garden being created in Minneapolis. We were able to get a sneak peek of the creation. It is an incredible new home. Here is an article from the Star Tribune written last year.

One of the speakers for the evening happened to be the proud parents of my good little friend, Grace. If you recall back in 2012 I visited Grace in the hospital a few times while she was waiting for a heart transplant. It just happened to be that last Thursday, October 23rd, was the two year anniversary of Grace receiving her new heart. It is wonderful to see Grace and her family enjoying life. I was shocked to see Grace running around all over the place. The last time I saw her she was confined to the hospital. She spent 445 days in the hospital and now she is six years old and spending her days in her 1st grade classroom!

Mom, Dad, sister Olivia, and Grace looking up at her dad

Grace & me waiting for transplants in April 2012

I am grateful to all the loving people that are part of the LifeSource family. Without the passionate individuals that support donation and transplantation, neither Grace nor I would be living today. Thank you everyone at LifeSource, you are truly “Building More Tomorrows”.

Friday, Travis and I went for a final boat ride of the year and captured an amazing photo of the sunset from the water. After the sun went down we met up with a couple of friends at the LynLake Brewery. Friends of ours opened up the brewery a few weeks ago. Although they don’t have a kitchen, you can order food from neighboring restaurants and they will deliver it right to your table! The added bonus, the delivery people are wearing super hero outfits. If you like beer, please check out the new hot spot of Uptown. Saturday, we stopped by our neighbors for a little get together and then Travis and I were off to the Wild hockey game. Trav’s dad and stepmom gave us the tickets. The Wild won 7 to 2!Then Sunday, we attended a benefit for a friend. He has been out of work for a few months and has another surgery this coming Wednesday. He is a wonderful man and it was nice to see so many people supporting him.

With all that being said for my weekend, it is time for a health report. Last Friday I had lung functions again and unfortunately they dropped back down a bit. I received a call later that night asking me to come back on Monday to be seen by one of my doctors. Yesterday at my appointment, we came up with a plan of attack. Along with the nebulized medication I am already taking, we added an inhaler, an antibiotic, and a pill to help with allergies.

My X-Ray looked good and I have been feeling great. Otherwise I wouldn’t have had such a full schedule of events. Whatever virus both Travis and I contracted over a month ago is lingering. Travis is also still coughing. Hopefully all the medication will get me through this bug that keeps on bugging. If things don’t improve at my next doctors appointment I have scheduled in the middle of November, we will most likely have to schedule a bronchoscopy. We will cross that path if we get there. For now, I will keep exercising and trying to keep these new pretty pink lungs happy 🙂

On Monday, October 6th, I thought I was going to be hospitalized. With my old CF infected lungs, it used to be that if my lung functions were creeping downward and I had a terrible cough, it meant my lungs needed I.V. antibiotics to fight off an infection. Not this time. Actually, Travis was my savior. Since he had the same cough and congestion, my doctor came to the conclusion that I had a virus. If things didn’t become worse, he said we would let it runs its course. I thought to myself, this is what it is like to have new healthy lungs, let it run its course? Oddly enough, I sort of appreciated experiencing my first “normal” virus. My PFT’s on October 13th finally had shown a slight improvement. I am still using my nebulizer but this weeks lung functions should determine how long I will need to continue “smoking” medicine.

This week our friend, Sue, flew into town for a quick visit from Cleveland. We had not seen her in two years. It is so fun seeing someone that I haven’t seen in a while. The amazement on their faces when they don’t see me attached to any oxygen tubes. We remembered when we went on a trip together a number of years ago. The airline required me to bring enough oxygen tanks on the plane for both outbound and returning flights. It ended up the tanks occupied the entire first class cabin’s overhead luggage area. It was so embarrassing. Needless to say there were a few upset passengers. Nothing I could do about it but laugh, especially looking back.

It was nice enough outside to get a boat ride in while Sue was in town.

We met up with our good friends, Sue’s brother Jeff, Rochelle, and Dana. We all went to the Dakota Jazz Club to see jazz musician Kat Edmonson. Since Sue is a good friend of Kat’s, we were “lucky” enough to spend some time with her and have lunch together before her concert. You may recognize her voice singing her hit “Lucky” in the Coca Cola commercials which aired during the last Winter Olympics and Superbowl. We saw Kat a year and a half ago for the first time and fell in love with her voice. She has an incredibly unique and old fashioned sound to her voice. I have included two of her songs but you can hear more by clicking on the link above to her website.

Dana, Travis, myself, Sue, Kat, Jeff, & Rochelle

Kat and myself

Travis, myself, & Bob

Travis had work in Wisconsin again and it just happened to be around the same time as the border battle between the Vikings and the Packers at Lambeau Field on Thursday night. I quickly volunteered to join him! We had a bunch of friends that had also made the trek to Green Bay to cheer on our home team. Even though the game was a little rough to watch we had an awesome time.

By the time we decided we would be traveling, all the hotels were booked. The Roost Bed and Breakfast in Appleton, WI had a cancellation Thursday afternoon so we jumped at the chance and took the room. It was such a darling B & B. The breakfast was delicious and the the other ten people who were staying there had also been at the game the night before so there was plenty of good conversation.

On our way home after Travis’ meeting on Friday, we took a quick detour to check out our good friends family’s supper club, Blink Bonnie. We absolutely loved it, the food was amazing! If you are ever in the area of Minocqua WI, I highly recommend it. After dinner we drove home in white out conditions from, do I dare say it, SNOW!Saturday night, The Breathe Easy Music Festival was fantastic! The bands were awesome, the crowd was pumped and with preliminary numbers, they managed to raise almost $50,000!! Way to go Rob Olson for all your hard work and dedication organizing the event and making a difference in the lives of those suffering from Cystic Fibrosis. I spoke for a few minutes, here is a video.

Rob, who coordinated the entire night, played with his band, Sweet Mash, and sounded great! The Chris Hawkey Band was rockin’, and the evening finished with Sister Hazel.  One of our friends, Chris Thorsen, and his band, The Devon Worley Band, also played and were marvelous. Thanks for participating Chris. I was able to talk with the country duo, Branch & Dean, who are large CF advocates. Steve Branch’s son unfortunately passed away last year from CF. Branch & Dean are working with the Cystic Fibrosis Foundation to start a national concert tour to bring awareness of CF starting in 2015.

Me and Chris

Steve Branch, myself, Marlon Dean Scallan

This last weekend the weather was beautiful outside. We had friends over on Saturday then Sunday our neighbors had an old fashioned cider press party using her grandmother’s press. It was literally some of the best cider I have ever tasted!
My cough is getting better but now Travis sounds horrible. He has a terrible cough and is congested. I don’t think I have ever had a coughing buddy before. The weird but neat thing is, my cough is so satisfying. With my new lungs I have the capacity to take a deep breath and really cough the junk out. With my old lungs, it was so difficult.
I think the Prednisone burst is helping with my infection and it sure has given me a little extra energy. The problem is, not when I want it! I have had a few days where it has been 5am before I even began to feel sleepy.
The Prednisone is also taking a toll on my diabetes. My blood sugar was so high on Sunday my machine read “HIGH”. When that happens, it means my blood sugar is registering over 500. The norm is 80-120! I have made some changes to my insulin pump and finally my sugars are back to a good range.
I have lung function tests again on Monday. I am really crossing my fingers that my lungs have improved.
If you happen to be attending the Breathe Easy Music Festival this Saturday, yours truly will be saying a few words around 7pm. We are looking forward to the event.
Tonight is the big game SKOL VIKINGS 🏈