Bachelorette

I recently went through a bit of a bachelorette period. Travis was out of town for ten days! He was in Toronto for work and then went across the pond to Ireland for a golf trip with the boys. Nine of them left us ladies behind. I know, rude on their part! Actually, I am happy for them, they had a tremendous trip of a lifetime.Ireland pan

Ireland oceanIreland golfWhile he was gone I went to lunch with Mom, spent the holiday weekend by going to some dear friends’ house for a barbeque, went out with girlfriends at night, and ate whatever I wanted for dinner!

Girls Girls

Good times with: Kimmy, Megan, Kathy, Dana, Sammy, Aimee, Julie, Heather, Annie, and me.

Dana was out of town at a wedding so my niece, Lauren, and her girlfriend Laura, also stayed with me for two days. We went to the Science Museum of Minnesota and I took them out for a nice dinner.

Manny's Laura & Lauren

me, Laura, & Lauren

Honey had fun while her daddy was gone too. She spent time with her younger cousin, Katie, a two and a half month old Yorkie. She also reunited with her sister, Piper, for the second time. They spent hours rolling in the grass playing together. They finally took a minute to lay down together.

Honey and Katie lunch

Katie & Honey

Honey and Piper in grass

Honey & Piper

Honey and Piper tired

Pooped out puppies!

Lauren just wrapped up another year of dance. She is a great dancer and looks so mature. All of the family that attended were very proud of her. She did a fantastic job! Since I drive her one day every week to dance, Dana bought me a matching jacket embroidered with “dance mom”. We wore them the night of the recital. I love being her “other” mother!

Lauren dance

Lauren is front and center

Dance mom's

Acting like “dance mom’s”

Also while Travis was gone, we celebrated my mother’s 75th birthday! My mom is half Irish and half Scottish. I know, YIKES! Travis sent her the best gift ever from Ireland. He had one of the Irish bands sing happy birthday to her and texted her the video.

Mom's 75th

Mom’s 75th! John, me, dad, mom

Recently, LifeSource hosted an open house to see their new facility. The new building brings a new future for organ, eye, and tissue donation. They are going to be recovering tissue on site at the new facility. Instead of waiting for an operating room at busy hospitals, they will now be able to bring a donor to their new building that accommodates this process. It was a beautiful morning for the flag raising ceremony.LifeSource new buildingFlagHealth update. Last Sunday, for the first time, I experienced a twenty four hour stomach flu, or food poising, not sure which. It wasn’t fun! I was sick every hour on the hour throughout the night. Travis was so sweet taking garbage bags outside after every episode. I called my transplant coordinator in the morning to notify them of my overnight. I was told if I couldn’t keep my medication down in the afternoon, I would have to head to the hospital. It is very important not to miss my anti-rejection medication. If my stomach wouldn’t allow me to keep my meds down, I would have had to receive them through an I.V. Luckily, that wasn’t the case, they stayed in my belly. Although I spent all day in bed on Monday, Tuesday I was back to myself.

This coming Tuesday, I will be adding a new type of doctor to my health team. I’m meeting with a nephrologist. I have been spilling protein in my urine. That may be a sign of some kidney issues. Many things can cause kidney problems, medications can be one them. I will fill you in when I know more.

 

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Wordless Wednesday

Birds

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Wordless Wednesday

Lilac

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Wordless Wednesday

image

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Exciting CF News

Last Tuesday, I was honored to be asked to speak in front of a group supporting research during the “Spotlight on Lung Research and Care” at the University of Minnesota. I was able to share how lucky I am to live in Minnesota and the tremendous health care that I have received throughout the years. Minnesota has always been a place where people with cystic fibrosis could expect to be above average. I am living proof of that!

Also last week, there was some VERY EXCITING news for some cystic fibrosis patients. This is a remarkable breakthrough for the disease. Here is one of the articles: Vertex cystic fibrosis treatment.

This combination of medications could help CF patients with the same genetic mutation that I have. While I wouldn’t be able to take the medication because I have healthy new lungs, it’s encouraging to know that a large segment of the CF population can be helped. Thank you to everyone who has donated to the CF Foundation over the years. The foundation was instrumental in aiding this research which gets us one step closer to finding a cure for CF.

Lately, I have also been able to see friends that I have not seen in a very long time. I met with my girlfriend Tammy and had dinner at her house. I drove to Red Wing and was able to see Nicole and her family, and also celebrated our friend Brenda’s 40th Birthday. I had not seen any of their husbands or kids since my surgery. It has been great to feel energetic enough to see everyone.

Nicole in Red Wing

Nicole & me in Red Wing

I want to inform you, I will be starting “Wordless Wednesday” tomorrow! Every Wednesday, I will post a picture, no words. It may be a nature photo, a picture you may have to guess what it is, or let’s face it, most of them will probably be our adorable puppy, Honey 🙂

Health update: Except for the one incident when Travis was in Vegas for work, I have been feeling pretty good. My blood pressure inexplicably elevated one evening and it warranted an ambulance visit. A half dozen handsome first responders were in the house. Miraculously, my vitals returned to normal and I was able to avoid a trip to the Emergency Room. Honey has been enjoying the daily walks I take her on, even if it’s raining. I saw my ENT today, I have a little junk in my sinuses again. We brought up the fact that I still need sinus surgery at some point. Since I had so many procedures last summer with my blood clot in my shoulder, she remarked last November we would discuss it in a year. She said as long as my symptoms are not much worse, we will address the issue in another 6 months.

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Salty Girls

Click the link to read the Yahoo article: Salty girls

Women With Cystic Fibrosis Are Fearless And Gorgeous. Just Look At These Photos.

Women With Cystic Fibrosis Are Fearless And Gorgeous. Just Look At These Photos.

 

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Donate Life Day 2015

As you can imagine, we were thrown quite the curve-ball when Rosie suddenly passed away on the 19th of April. We were having an awesome weekend before it ended in a tragedy. The day before, I was so honored when I received the Ambassador of the Year award from LifeSource. It was wonderful to accept this award surrounded by family, friends and fellow Ambassadors.

Donate Life Day Family

Dad, Mom, Travis, me, John, Lauren, Dana, Colleen

I am so lucky to even be alive to accept such an award. One of the reasons I received my transplant is due to all the wonderful people that are part of the LifeSource family. Without this organization, transplants wouldn’t be possible. I will continue to spread awareness for donation and transplantation. It is very rewarding to know that the work we do at Lifesource is helping many families who are waiting for the gift of life.

LifeSource gave me a lovely glass Tree of Courage which is on display in our home. Tree of courageThere was a touching note that accompanied the glass ball:

Like a tree in a storm we are sometimes tossed, battered and pushed to our limits. Never the less, we dig deep, hold on or fight back even when the odds may be against us. The Tree of Courage reminds us that we can all be courageous, weather life’s storms and come out stronger.

SidewalkThe night we took Rosie to the vet, we were supposed to have dinner with our friends, Ryan & Jenny. Their twins, Alexa and Tyler, drew some adorable chalk art on the their sidewalk to greet us when we arrived.  So cute! As with most art, we know it would have been better to see it in person. It was nice to see the picture when we were going through such a difficult time.

Thank you everyone for sending messages for the loss of our beloved dog, Rosie. Thanks for all the photos many of you have sent with you or your kids with her. She really was loved by everyone. Rosie definitely has a special place in heaven.

One of our friends came over last week to see how we were doing. Thanks Juliann and Sioux for coming to play with Honey. Juliann posted this: “We finally got to meet Honey tonight! We reminisced about how much we all miss Rosie – a one of a kind dog who taught Sioux how to play and be bossy (and our first neighbor friend). Sioux promises to teach Honey everything she learned from Rosie. We love all the Malnars.”Honey and Sioux

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Rest In Peace Rosie

It’s Travis here to write to you with great sadness that Rosie, our beloved Soft Coated Wheaten Terrier, passed peacefully last night after a 4 hour battle with cancer.  Born on July 11, 2004, she burst into our family as a result of too much wine and too much fun. We “adopted” her after Nikki forgot to put her hand down during a live auction for the Cystic Fibrosis Foundation.Rosie puppy1That night, I was so mad to write that check. We named her Rosie because Cystic Fibrosis is sometimes called the 65 Roses disease. As first time puppy parents, we didn’t know a thing about raising a good dog. As with everything Nikki has done, she was determined to become the best dog mom ever. In her adolescent years, Rosie was just like a typical kid. She would sneak out of the house when we weren’t paying attention and run down the block to play with the neighborhood kids. After Nikki spent nearly 3 years with her going to obedience classes, she mellowed out and would rarely leave our side. Rosie rarely walked on a leash and had the self control to stop before crossing the street, even when in hot pursuit of a squirrel.

Rosie made friends everywhere she went. Whether it was on a stool in an Iron Range bar, walking around Lake Calhoun, or drifting on a boat on Lake Minnetonka, she could always be found kissing a new friend as they told her that they loved her. She enjoyed playing with all of the neighborhood kids, mailmen, squirrels and bunnies. Rosie maintained her youthful appearance and attitude throughout her life. In fact, she made the cover of every one of our Christmas cards for 11 straight years. Just last week, someone asked if she was still a puppy.Rosie best dogPerhaps most importantly, Rosie served as the Chief Snuggling Officer for Nikki as she endured several hospitalizations over the years. Rosie knew when Nikki was sick and would stay by her side for days. She would also sneak into the hospital, but the nurses were always happy to see her too. She encouraged Nikki to go for a walk to get her much needed exercise. Rosie was a source of comfort and hope for Nikki after she received her double lung transplant in the Fall of 2013. Check out this video of Rosie as she welcomed Nikki home after her surgery.

We knew Rosie would be a good mentor to her new little sister, Honey. Rosie couchRosie’s calm disposition with an occasional firm growl, taught Honey how to be a good puppy…..so far. Rosie taught Honey how to play Tug of War and even let her win sometimes. They played Tag every day and Honey was just learning the game of Chase the Goose. We know their 8 weeks together made a positive impact on Honey’s personality.Rosie and HoneyRosie’s last day began like any other, all four of us snuggled in the morning. We went for a walk in the afternoon, and she even took a quick dip in the lake for the first time this year. She snacked on a couple pieces of cheese, her favorite treat.

When we returned from our walk, she was listless with labored breathing. We took her to the emergency vet and soon learned she had fluid around her heart and lungs. She had a tumor that burst and further tests revealed she had an aggressive cancer throughout her internal organs. There were no previous symptoms. She likely wouldn’t make it through the night. All of her local family came to say goodbye and she passed peacefully in our arms after giving a couple of last kisses and a happy tail wag.

We are deeply shocked and saddened with this sudden change in our lives. Anyone that ever met Rosie, knew she was a wonderful dog. Gentle, sweet and deeply loved is how she will be remembered. Rosie will forever hold a special place in our hearts.

At first, I was mad to write the check that night Rosie fatefully came into our lives. In hindsight, it was the best investment I ever made.

Rosie was the best dog ever.

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My Story On WCCO

WCCo Jennifer

Me & Jennifer

A HUGE thank you to WCCO reporter Jennifer Mayerle for interviewing me and sharing my journey. She was amazing! Not only did she bring awareness to my story last night, she put together the phone bank to answer any questions about organ, eye. and tissue donation. Each of us volunteers spoke with several people looking for information or sharing their stories! Callers asked great questions and many mentioned how they were going to become registered donors! This will truly make an impact on our community for those waiting for life saving transplants.

WCCO phone bank

Way to go team answering questions about organ donation!

Thank you everyone that has sent an email, text message or left a voice mail. I appreciate your support more than you can imagine. I am such a lucky girl to have all of you in my life. I have heard from people I don’t know, people I do know but haven’t been in touch with for a very long time, and even people that used to take care of me decades ago at Children’s hospital. Thank you Jennifer.

If you missed the story last night, here is a link Lung Transplant Recipient Honors Her Donor For The Gift Of Life

Don’t forget, if you support organ, eye, and tissue donation, wear Blue & Green tomorrow, April 17th, to celebrate National Blue & Green Day.

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WCCO Story 4/15 At 10:00pm

NDLM_2015_FacebookCover_Public with WebsiteTune into the WCCO news on channel 4 tomorrow night (Wednesday) at 10 PM to see me featured in a story for Donate Life Month. We met Jennifer Mayerle, a WCCO reporter, a few weeks ago. She decided to feature me in a story and she and a cameraman spent several hours with me last week.

Today, I was also informed they came up with the awesome idea to include a phone bank during the news cast!

A group of us will be at the station answering phones with the expectation of helping people with questions about becoming a registered eye, tissue, and organ donor. Please consider checking that box on your license or registering online.

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