I haven’t posted for a while and I have a lot to fill you in with. I will do that in the next couple of days.
For now though, if you happen to be watching the morning news tomorrow, Thursday, I will be live on Fox 9 Morning News around 8:30. Maybe a few minutes earlier, maybe a few minutes later?
Fill you in soon!
For the first time in nine years, I stepped on the ice without oxygen! It felt amazing! It was such a special moment. My mom, dad, brother and Travis all came to the rink to watch. It was incredible to skate around the rink multiple times without being out of breath. I just kept passing everyone on the sidelines saying “I can breathe!”
As a matter of fact, one of my former coaches decided she would strap on her skates as well. It had been quite a few years since she has skated also. Because it was such an important day, she joined me on the ice.
Me with my former coach Nancy
We have been trying to upload the video of my first skate. I am having technical issues with my video camera so a picture is all you get this time.
Health update: Wednesday I got the results of my blood work. I have mentioned the virus CMV (cytomegalovirus) in the past. For the last three weeks I had a low reading showing up on my blood test results. My transplant coordinator mentioned how odd it was to keep a stable number. Usually, once CMV starts to surface it continues to rise. Miraculously, it came back negative. YAY! We knew my body has been growing CMV antibodies but this time, my body even fought it off on its own.
Today I had my first doctors appointment of 2015. The year is starting off with a bang! Just like in the story of The Tortoise and the Hare, slow and steady wins the race, I’m in it for the long haul! My lung functions are slowly but surely continuing to rise. They were the highest they have been since surgery, the highest in many many years!
There are quite a few numbers they concentrate on when looking at PFT’s (pulmonary function tests). One of them is called FEV1. It stands for “Forced Expiratory Volume” in one second. It is the volume exhaled during the first second of an expiratory effort. It is one of the most frequent indicators of airway obstruction.
In my phone I have all my PFT’s recorded from 2004 to current date. In January 2004, my FEV1 number was 1.15 which was 42% of predicted. They were that low even back then, I had lived well below 50% for years. Before my transplant, January 2013, my number was .72, 25% predicted, no wonder I had trouble breathing! Today, I couldn’t believe my eyes. January 2015, my FEV1 is 2.31, with 81% of predicted!! I am well on my way of my goal of surpassing 100%!
It couldn’t have been more perfect, I was walking to my car and I ran into one of my surgeons, Dr. Loor. I was able to share the excellent news with the man who placed these new pretty pink lungs in my chest!
My primary doctor, Dr. Dunitz, also gave me permission to start a new exercise. Back when I was having my surgery, Travis had posted some of the things that I wanted to do after my surgery. One of my goals was to learn to play the bagpipes. Looks like I will really be exercising these new pipes of mine.
Dr. Dunitz also told me I wouldn’t have to return to see him in clinic for a whole three months. I was allowed to stop one of my drugs, one less off my list is great. He wants me to do PFT’s once a month to keep an eye on everything as a precaution. NO BIG DEAL!
Also, it was my brother’s birthday the other day. Happy 50th John! I love you. He was sick and wasn’t able to spend the holidays with us. I’m just glad we were together to celebrate the big 5-0!
We had a wonderful Christmas at our house. Unfortunately, we missed out on a few family members during the holiday. My bother and Travis’ mom caught the awful crud that has been circulating. We missed John, Colleen, & Dennis but they were with us in spirit.
We did however have our twenty year old nephew, Zac, celebrate Christmas with us. We have not seen him in over a year. He flew in from Phoenix on Christmas Eve night and left early the day after Christmas. It was a quick trip but it was great to see him.
Once again, we carried on the tradition of fondue. It was a feast full of marinated beef and chicken, shrimp, potatoes, cauliflower, onion and other fixings. We are blessed to eat such an amazing meal spending time with family. Hope everyone had a joyous holiday season.
We are always asking, “What are you going to do today?” and answer back with “Be awesome”. Dana & Lauren bought everyone T-shirts saying “Be Awesome”
Lauren, Dana, Travis, Rosie, me, & Zac being “awesome”
Last Monday, Travis and I headed for the windy city. We stayed with our friends Tony, Agata, and their son, Quinn, who was born three weeks ago, and can’t leave out their boxer Koka.
Agata & me
Travis & me meeting Quinn
Sweet Koka
Tuesday we were off to St. Joseph, Michigan. Travis helped a friend install a radiant heat system in their basement. We ended up staying in this cute little beach town, New Buffalo, Michigan.
We were going to bring our dog, Rosie, but Dana offered to watch her while we were gone. Travis grabbed a beer and we thought of her. Then of course the restaurant, Rosie’s….
Wednesday, New Year’s Eve, we drove nearly to Ohio. Travis had business in Angola, Indiana. After being in a store helping Travis work until 6pm we finally headed back to Chicago to ring in the new year. We spent the night with Travis’ cousin Ashley, Scott, and their eight month old Carter.
Me, Ashley, Scott, & Travis. Happy New Year!
New Year’s Day we met up with our buddy Erch. He was DJ’ing at a club in Chicago during the football bowl games.
Yesterday, after spending twenty hours in the car over the last five days, we made it back home safely (and still speaking to each other). We like going on adventures together. We made it back just in time to make a birthday dinner for another friend of ours, Buck.
Happy 2015! Let this year be the best one yet!
I have a lot to fill you in with. I have spent the last couple of weeks being busy as ever. I have been able to enjoy so much!
Travis, Ragnar, & me
It started with a couple of holiday parties a couple of weeks ago. Followed by being able to attend and breathe outside in the cold at another football game. It was a great overtime win for the Vikings. We even had a picture with Ragnar, Vikings mascot. If Ragnar ever retires, Travis could play the part. After all, he has a head start with his coat.
Annual girls holiday get together
I spent a couple of nights with different groups of girlfriends rejoicing the holidays. My niece also had a choir concert that I was able to attend. But, I did have to miss out on a family gathering. This time not because I wasn’t feeling well. I have to be very careful especially this time of year. With all the cold and flu that circulates I do tend to hibernate quite a bit during the winter.
One of the family members was just getting over strep throat. With a suppressed immune system I have to be extra cautious being around anyone who has recently been sick. They were very sweet to offer to reschedule. I said “absolutely not”. It is not easy when coordinating a large group. I understand there are just certain things I will need to miss out on. I am glad they continued with their dinner. I am lucky to have understanding friends and family that notify me before hand if someone is not feeling well.
Last Saturday, we brought our neighbor, Sarah, with us to do a large portion of toy shopping for Toys for Tots. Our niece Lauren, was supposed to come with us but wasn’t feeling well. We picked out all sorts of goodies!
Sarah, me, & Travis buying toys
Monday, I spoke at Park High School’s health classes about organ, eye, and tissue donation in Cottage Grove with my buddy Bill. We rode together and grabbed some breakfast before heading to the school. He surprised me with a gift, a t-shirt with this in the front! Thanks Bill, I will wear it proudly! 
Most people don’t like to reveal their age. I am proud to say I’m 39! Age is not something to be embarrassed about. It is a privilege to celebrate another year living and breathing! The morning of my 39th birthday, I headed down to the University of Minnesota. I first had my foot poked and the lab took something from me. Then I gave something to them. They took blood. I delivered cookies. I brought cookies to the lab, the ICU (intensive care unit), the 6th floor nursing station, the pharmacy, the lung clinic, and the specialty infusion center. These are all areas that took care of me during my transplant. I was able to celebrate another year alive and I wanted to hand out some holiday treats.
After circulating cookies, I picked up Lauren. We went and grabbed a few more toys and headed to Kare11 News to drop them off. We had so many toys, they wouldn’t all fit in my car! Thanks to our friend Aimee who came over with her truck to deliver! Look at the puppy, it’s like he is saying, “I’m going to a kid that is going to love me”!
Someone will love me Christmas morning!
Lauren, Aimee, Marine, & me
I had to take a picture of all the receipts from our shopping sprees. I felt like this was a Christmas list from all the kids. You helped fulfill these wishes!
I want to Thank everyone for your contributions. With your donations, Lauren, Aimee, and I dropped off 340 toys!!! There are definitely going to be smiles Christmas morning on some happy kiddos’ faces when they unwrap one of your toys! Thanks again for allowing me to be your private shopper and delivery gal!If you click on the link, you will see Lauren and I waving at about the 1:40 mark and again at the 2:10 mark on Kare11
Last year after we delivered toys, Lauren and I had a photo taken with Belinda Jensen (Kare11 Meteorologist). We asked her for a photo again this year. She immediately remembered us from last year. She had remembered, last year when we dropped off toys, that I had recently received my life saving double lung transplant. She asked how I was doing and feeling. After a brief conversation, she graciously allowed another picture with her.
Then to find out, Belinda had posted something on her facebook page! I was with Dana when one of her friends tagged her. Thank you so much Belinda for the support and sharing! Here is the link to the post:
Nikki and her niece came by KARE 11 News backyard today and said hello on her birthday, as with many donors there are some amazing stories.
She writes this in her email to me.
So nice to see you again on my birthday while delivering toys with my niece. I have delivered on this day for over a decade. With my new lungs, it has a whole new meaning. I now donate in honor of my donor and their family. I get the chance to celebrate another year alive because of the selfless gift I have received.
This year I was able to gather over 300 toys and some cash donations. I can only imagine the smiles on the children’s faces Christmas morning.
Thanks for being such great supporters for Toys for Tots.
Thank you Nikki we will see you next year!
After our delivery, we met up with my family for dinner. Dana & I then met up with Aimee again to finish the night celebrating my birthday. I had a wonderful birthday. There is one thing that would have made it the best birthday though. Travis unfortunately had to be out of town all week 😦 I missed him but we will celebrate together.
The following day I went to the annual LifeSource volunteer holiday luncheon. It is always fun to catch up with other life saving transplant recipients. There are also many donor families I have met and got to know that attend. We all have a different story to tell about our connection to donation and transplantation. Each one of these stories are important in spreading awareness about organ, eye, and tissue donation. We must all have been good this year. Santa showed up and delivered Donate Life tote bags to everyone.
Later that evening, my brother took my mom and I to the Ordway to see the holiday play.
Me & my brother John
Travis came home last night 🙂 We went over to Dana and Lauren’s house to watch the movie Elf. It felt like we were sitting in our own little elf village. They have a very naughty Elf on the Shelf named Clyde. He had just made an appearance. He has been very mischievous leading up to Lauren’s winter break. But I believe this is the finale for the year, you will see what he wrote. The best part is, even Dana doesn’t know who “Clyde” is. This all happens while Dana is at work and Lauren is at school! The other thing is, all the furniture in the house was also moved. You’ll notice the tree is even in Lauren’s room, not the living room. Enjoy these pictures. Hopefully if you have an Elf on a Shelf he isn’t as naughty at your house!
Clyde hanging out
Dana’s queen size bed!
Living room couch on opposite side of room
One of the bathroom’s. Don’t worry, the other was “decorated” too.
Wonder what’s in these gifts?
Thank goodness he’s left until next year!
My niece and I will be waving to all of you after the weather during the 6 PM news cast aired on Kare11 this evening. You should see us around 6:25!
Thank you all for the tremendous outpouring of support for my annual Birthday Toys for Tots Drive. Some people have dropped off toys at the house and some have sent checks. I’ve had a couple of requests to send an electronic donation. For those who prefer to contribute electronically to the cause, you can PayPal me at dnikkitsf@aol.com
I’ll be using the proceeds to go shopping this weekend for a truck(sleigh) load of toys.
In case you’re seeing this for the first time, here is a link to my recent post about my annual efforts to help kids have a Merry Christmas.
https://nikkisnewlungs.wordpress.com/2014/11/21/its-toy-season/
Paint this picture in your head:
Imagine, it is cloudy outside, cool but not cold. Quiet with no one else around. A serene setting. You plan to take a walk while adding some jogging intervals. You start to jog. After a little while you start to walk again. Once you slow down, you notice you’re breathing heavily. But it feels different than it has in the past. A feeling you didn’t realize you were even missing. A feeling of your lower lungs filling with crisp, fresh air. You start to breathe deeply over and over again because you don’t want this astonishing feeling to stop. You then realize, maybe you better stop breathing so hard, you don’t want to start hyperventilating and end up passing out. But you can’t stop enjoying the amount of air you feel passing through your entire chest. You are having an epiphany.
I took this picture. It is from the boardwalk by our house where I was jogging with our dog Rosie. This is the view I was having during the moment when, for the first time, I felt my entire chest expanding. I didn’t want to forget what it looked like.
Everyday I honor my donor by putting my hand on my chest and taking a deep breath thanking them for this selfless gift. Thank you for these new pretty pink lungs. Thank you for allowing me to experience this epiphany.
My transplant surgeon Dr. Loor and me before I left the hospital
When one of your transplant surgeons asks if you would speak at a conference, you don’t even need to think about it, you say yes. I was honored to be asked by Dr. Loor to share my story at the Bakken Symposium at the University of Minnesota.
The University of Minnesota’s Department of Surgery hosts an annual symposium to highlight critical information about cutting edge medical devices and therapies that surgeons and health care professionals need to stay up to date in their specialty.
Dr. Loor spoke about the breathing lung portable medical device that preserves lungs for transplantation made by TransMedics. If you clink on the link and click on “lung patients”, there is a great video with the full explanation of how it works.
Lungs are very fragile and difficult to transplant. Typically, you only have a four to six hour window to transplant lungs. This device they call “lungs in a box” will most likely change the lives of many waiting for life saving surgeries. It removes the short window of transport time and increases the travel radius for organs which in turn means more transplants performed.
They brought the device to the conference. It had a pair of swine lungs breathing being operated by nothing more than a battery. I was lucky to see this machine in action. It is fascinating to see lungs breathing outside the body. I have two words- medical technology.
I have included a couple of videos from a year ago which show how this machine works. The first video was done by University of Minnesota. The second video is from WCCO News, click on the link.
For the first time since my transplant, which was over a year ago, I don’t need to go to the clinic for blood work for a whole two weeks! That’s right, I have still been going to the clinic at least once a week, sometimes twice a week getting my foot poked for a blood sample.
After transplant, it takes a while for your body to get used to all the medications. Cystic fibrosis also causes digestive issues which effect how my body breaks down and absorbs everything including food and medications. This additional challenge makes it more difficult to regulate all my drug levels. They are finally stabilizing.
We had a wonderful Thanksgiving, spending time with family and friends. The day after we stuffed ourselves with turkey and all the fixings, we met up with some of Travis’ family and more friends. Since we don’t get to all see each other often, we made some last minute plans and enjoyed dinner together.
Cousin Erik, friend Richard, me, Trav, Dana, friend Aimee, cousin Ashley and her husband Scott
A friend of ours that also has CF, Missy, hosts a birthday party every year where she asks for donations for the CF Foundation in lieu of presents. We are very similar in the sense that we love having a good time, love raising money to find a cure for CF, and love celebrating birthdays!
She always adds a theme to the night. This year, it was a fringe and fur theme. I decided to go to my parents and shop in the storage closets where all my old figure skating outfits are stored. I found one with fringe! It wasn’t surprising I found what I was looking for, it was surprising I could still fit in it! The last time I wore this, I was 18!
Sunday, we decided to brave the cold. After all, with my new lungs I don’t seem to be bothered by the cold any longer. I love this new life! We attended the 7th coldest Vikings home game in history. I had no problem sitting through the game during the cold snap we encountered. It was a great game. We were on our feet the entire game which probably helped keep us warm. I bet you noticed, Travis loved Missy’s hat so much from the night before, he borrowed it. Although we didn’t wear the fringe, we wore the fur!
Nikki's New Lungs 