Nikki's New Lungs

I am finally filling you in on the last couple of weeks. After hearing from my donor’s mother, I felt it was more important to share that wonderful news on it’s own.

So here’s what’s been going on. Two weeks ago, I spoke at the Twin Cities 25 Finest event presented by the Cystic Fibrosis Foundation. The 25 finest are up and coming entrepreneurs and philanthropic individuals in our community who were honored and asked to support the CF Foundation. Together, they raised $148,000. Congrats to all the honorees. You can see all of them in the September issue of the Minneapolis/St. Paul magazine.

September 25th &26th, we were guests of our friends, Jeff & Rochelle, at a few events hosted by Ohio University. Their football team was in town to take on the Golden Gophers at the U of M homecoming tilt.  I know, we are from Minnesota and it was homecoming. Don’t worry, we still cheered on the Gophers. They hosted a very nice dinner Friday night where the president and athletic director spoke. All of the OU folks we met were very nice and hospitable, especially since we are not alumni.

Gopher homecoming win!

Before we headed off for game day fun, we had stopped out at the LifeSource headquarters where they unveiled the new Garden Bench & Memorial Wall in the healing garden. When I picked up my letter from Jacob’s mother last week, it was so nice to walk by and touch the inscription I had placed for my donor. I hope others find this to be a place to visit, reflect, and remember.

HONORING THOSE WHO HAVE GENEROUSLY GIVEN LIFE AND HOPE THROUGH THE GIFTS OF ORGAN, EYE, AND TISSUE DONATION

My inscription honoring my donor

After the Gopher win, we met up with the Ohio crew again at a post game reception. It wasn’t until about 9pm when we arrived and we were hungry. There was small plate food and we were starving. Travis and I must have split five small plates of cheese and bacon. What a combination huh?

The following morning, that combo did not agree with me. I ended up getting sick to my stomach all day Sunday. I actually didn’t feel well for four days. It’s true, you can eat too much bacon in one sitting!

Health update: I told you I started a new medication for my blood pressure. The dosing was a little too much to begin with. I started experiencing some low blood pressure at first but we have made adjustments and figured out the correct amount. I am more comfortable and happy now because my BP numbers have been great.

Strangely though, one of my other med levels took a large jump. It had been stable for a long time, then POOF – elevated blood levels. The annoying part is when it reaches the range I am in, it causes very bad headaches. While we had a weekend full of fun two weeks ago, it was very challenging to stay perky. I felt like my eyes were a little cross eyed trying to focus throughout the day. It was draining dealing with a constant headache.

We decreased the dose and last week my numbers were even higher. After another reduction this week, the numbers are now trending in the right direction, but the headaches persist.

And then there is my foot. I’m STILL wearing the boot. I met with my orthopedic last week to get a recheck. He was able to see it has started to heal. I can walk around the house a little throughout the day but it still hurts in the evening. It is definitely not shoe worthy yet.

I guess when you walk around, even while wearing a boot, you are still putting all your weight on your foot. Hence the extended healing time. I am ready to give “the boot” to this boot.

One more thing, if you are looking for something to do this coming Saturday, October 10, the Breathe Easy Music Festival benefiting the Cystic Fibrosis Foundation is happening downtown at Mill City Nights. This year’s line up is awesome! Along with local talent, there is a Prince tribute band and the headliner is the band Hairball.

We will be going for a little while but we have a prior commitment we need to attend so we won’t be able to stay the entire evening. We have gone to this event a few times, and it is always a good time. If you like music, check out the full line up at the Breathe Easy Music Festival

Yesterday was a great day! I am dedicating this post to my double lung transplant donor’s family.

There was a voicemail on my phone yesterday morning from LifeSource. When I returned Jill’s call, I was crying on the phone because she told me they received a letter from my donor’s mom and it was waiting for me at their office. It did not take me long before I was in the car to pick it up. After some joyous conversation with some of my LifeSource family, I headed out the door with my letter in hand.

I wanted to open it right then and there to see what was inside, but more so, I wanted to wait until Travis came home from work to share the special moment with him. I wanted to sit on the deck during the beautiful fall afternoon and read the words on the paper together. When I opened the envelope, I wanted the man I love next to me.

I spent the afternoon on cloud nine with a permanent grin on my face. All of a sudden I would stop, look around and take a deep breath. I have received the greatest gift of all, and now I was about to learn a few things about the person that bestowed this gift upon me. I was taking advantage of the day to appreciate everything, all the big things, and all the little things. I was appreciating life to the fullest.

After Travis arrived home, we sat on the stairs looking at the sunset and read the letter together. I could not have imagined it any other way. We cried, we held each other, we took it all in. We read it again. I know I will read this letter often and cherish it forever.

The tears of happiness and sorrow had dried a little so we took Honey for a walk. It gave us a chance to reflect on what was just in front of us. Following our walk, I had told my mom I would come over with the letter so she, my dad, and my brother could read it in person. Afterwards we headed to Dana’s to allow her and Lauren to read it as well. I wanted to share it with all my family but since they are the only ones within driving distance they had the advantage.

I am ecstatic that my donor’s mother responded to the letters I have sent. I now know a little about the nice young man that has given me my gift. I learned a little about my donor, Jacob. I learned Jacob was a loving son, brother, and uncle. Jacob loved to play baseball, loved to make people laugh, and nothing was more important to him than his friends and family.

In the letters I had written to my donor family, I had talked about how I honor my donor by sharing my story. I explained how I speak to driver’s education classes about the importance of donation, transplantation, and becoming a registered donor by checking the box on your driver’s license. Jacob’s mother shared with me that he skipped down the hall to get his license and “he was truly happy with his decision”. I am forever grateful for the choice he made.

I am so happy to have heard from Jacob’s mom. I know how rare it is for recipients and donor families to connect. I can only imagine how incredibly difficult it must have been for his mother to pick up the pen and write the sweet words about her son that is no longer with her. My heart goes out to a mother that has said goodbye to her son and to his friends and family that miss him daily. I am very thankful she responded. She also wrote “I just really thought you should know what an important, amazing person you are carrying around with you”.

I am proud and honored to be the girl to keep Jacob’s legacy living on.

When I was in the hospital at the age of five being diagnosed with cystic fibrosis, my mom bought me a toy to keep me occupied. Little did she know, I would decide it would be more fun to take it out of my room and aim for the nurses in the hallways. Actually, she should of known that was going to be going through my little mischievous mind.

She bought me toys called key cars. You stick a plastic key in the back of a match box like car and flick them with your finger. I have not seen them since I have been a young girl. My mom had just come back from visiting family in Winnipeg and told me she bought me a gift to celebrate my “second” birthday. I met her for coffee on my Lungiversary when she surprised me with this gift!!! So cool to have such a neat flashback.

KEY CARS!

That night, Travis and I celebrated the beautiful night by sitting outside for a big Sushi dinner.

2nd Lungiversary dinner

This picture is the closest I have ever been to riding a horse playing Polo. Before my new lungs, I would never have been able to take lessons for the golf on a horse sport. Can you see where I’m going with this? For my Lungiversary, Travis bought me Polo lessons! I will get to use them next summer. I’m super excited!

On August 29th, we hosted our second annual lobster boil. I get together with a group of ladies every month or so. Since August is a pretty special month where we celebrate all the deep breath’s I am now able to take in honor of my donor, we decided we needed to have an extra special evening. We also sing Happy Birthday to Travis.

We booked a one way plane ticket for forty-one live lobsters from Maine. Also on the menu were baby red potatoes, corn on the cob, polish sausage from Kosher’s sausage kitchen, cole slaw, corn bread, and of course melted butter to dip the little crustaceans.

Leela, me, Laura, Annie, Angela, Dana, Julie, Cherish, Kimmy, Kathy, Amy, & Rochelle

Apparently, I was jealous of Travis when he had to wear a brace for his cut tendons. I was carrying a bunch of stuff up our stairs when something heavy dropped on my foot. It hurt bad enough I dropped everything else to grab my foot. I have been wearing “the boot” for a couple of weeks now. I love our State Fair! Even though I was wearing the boot, it may not have been the most wise decision to walk around the Great Minnesota Get Together for hours with Travis on a Monday and then again with my mom and brother two days later. That’s when it really started to hurt. Last week, I had a MRI scan to find out there is a stress fracture in my third metatarsal bone. Three more weeks in the boot 😦

Travis and me at the fair

Had to repeat the photo with my mom and brother

My brother, mom and me at the 2015 State Fair

We were walking by the Merry-go-round at the fair when my mom mentioned she loves to ride them. I said, “let’s go!” The three of us enjoyed the leisure ride but when it came time for the imaginary ponies to stop, my mom’s horse stopped much higher than when she hopped on. We have a great picture of her while the ride is moving, I wish the camera would have been ready to take a photo of her exit. Her leg got stuck and we were laughing so hard!! She wasn’t sure what she was going to do until my brother finally assisted her leg over the saddle. Sorry mom, I still laugh thinking about this 🙂

Mom enjoying the Merry-go-round

I want to give our favorite nephew a shout out for his 21st Birthday! We wish we could have celebrated with him but he lives in Arizona. Can’t wait to see him soon though.We also said a “temporary goodbye” to our dear friend Aimee. She moved to the St. Louis area to help out with family. Hopefully someday she will be back here in Minnesota but we wish her the best of luck with her new adventure.

Holding back tears. Me, Aimee, & Travis

We had a great time on the lake during the long holiday weekend. We spent time with the neighbors and their kids one day on their boat, took Honey for her first boat ride, and had our friends, the Jennings, out for an afternoon on the lake.

Honey’s first boat ride

Travis, Bryan, Gavin, Grayson, & Farrah Jennings, and me

After ALL that, time for a health report. My sinuses have been bothering me a little with the allergy season. I see my ENT on Wednesday. I am guessing she will want to put a date on the calendar for my sinus surgery.

My blood pressure has been slowly creeping in an upwards direction. When I saw my nephrologist doctor back in June, I forgot to tell you, my kidney function is fine for now. We had discussed the option of adding an Angiotensin II Receptor Blocker (ARB) medication.

With the recent changes in my numbers, today, he decided to add that type of medication to my repertoire. The good news is, it is going to help the trifecta of issues I have working against me. It will help stop the progression of kidney disease, elevated blood pressure, and help my diabetes. If it could only stop me from being clumsy and breaking my feet, I would’ve requested taking this medication sooner!