Nikki's New Lungs

Me, Lauren, & Susan

Dana, Lauren, and I stopped by the LifeSource office today. The reason we were there was because my sweet little niece,  Lauren, decided to raise funds for Lifesource for her birthday.  Since her birthday was so soon after Christmas, she felt she didn’t need any more presents for herself. She has personally seen the benefits of organ donation and wanted to spread the word amongst her friends. She told her friends and family she preferred donations to LifeSource in lieu of gifts.

It was so exciting, a bunch of staff members gathered to hear Lauren tell her story. Lauren was able to raise $400.00 all on her own! We got a picture with the CEO, Susan, in front of one of the donor quilts. The quilts have pictures of loved ones that have passed away and given the gift of life to others by donation. Such a nice tribute to true heroes.

Susan explaining the Donor Quilts

Dana, Lauren, & myself

I think highly about my donor and their family today as I celebrate seven months since my surgery, it is hard to believe that much time has passed already. Unfortunately, along with this exciting news I have some bad news. I received a phone call late last night from my transplant coordinator. I am CMV positive again. We just got my white blood cell count back in the normal range and now I have to start round two with the medication that drops it. I’m bummed it is back so soon but we are catching it early which is a good thing. To give you an idea, the normal range for the blood test is less then 100. The first time I was positive my results were up at a whopping 5,100, this time we caught it at 900.

I have had a good reminder the last few days that even though my lungs don’t have cystic fibrosis the rest of my body still does, especially my sinuses. Everyday I do a couple of sinus rinses, I deiced to try stopping the daily regimen to see what would happen. It didn’t turn out in my favor. The thick mucus that I used to have in my lungs still exists in my sinuses and I got severely plugged up. My nose has been so stuffed the last couple of nights while trying to sleep it has been keeping me awake. I was able to be squeezed in today to see my ENT (ear, nose & throat) doctor. They sucked out a bunch of junk and then sprayed it with an antibiotic. I know it sounds gross but it doesn’t hurt and it should make a big difference over the next couple of days. Allergies could be contributing to my sinus congestion too. I was told that even though the trees are not budding they are producing pollen and the allergy predictions are high for this spring. We also started an allergy nose spray. It would have been nice to remove the rinses from my routine but if there is an infection in my sinuses it can drain down to my lungs and possibly cause a lung infection. That is something I definitely don’t want! Sinus rinses commenced.

If you like beer, I have an event for you. This coming Friday, March 28th, at 7:00p.m. the Cystic Fibrosis Foundation is hosting the first Minneapolis Brewer’s Ball. It is a simple philosophy, show up at the TCF stadium, spend quality time with friends, eat and taste more then twenty different beers for a good cause. Breweries have been opening up all over the Twin Cities. Fortunately for the CF Foundation, those brewmeisters can’t seem to pass up a party for a good cause. And the people at Uber have even partnered up to provide discounted rides home after the event.

Our friend Ben has organized a large group of friends to attend.  If you would like information or tickets to join us, click on the link 2104 Brewer’s Ball.

I love sushi but I was told that I had to wait at least six months after transplant before I could eat it again. While my white blood cell count was low I didn’t want to chance eating raw fish. Since my numbers are finally in the normal range, Travis and I went out Friday night and gorged ourselves on the slippery little suckers. We thoroughly enjoyed it (it had been just as long for Travis since he had sushi too), it was so delicious being able to satisfy a craving. It keeps getting better! My walking pace that is. Back in January I mentioned that I was pounding out the miles at a 28.5 minute mile pace.  I amazed myself today when I took Rosie for a walk. It was snowing out yet the sun was shining, I decided I would try jogging outside versus on the treadmill. I used the app on my phone called Runkeeper that uses GPS to record my speed, distance, pace, etc. I couldn’t believe it when the app told me I covered 1.61 miles in 28:01 minutes. I hit a new personal best with my 17:31 minute per mile pace!!

We had fun celebrating the “People who have to work on Monday so we celebrate on Saturday” version of the green holiday over the weekend. I have not felt well enough the last few years to join in the festivities of St. Patrick’s Day so it was awesome to be back in action, plaid pants, green legs and all – as you can see in the picture!

This week I am happy to fill you in that my white blood cell count is FINALLY in the normal range. I feel much better knowing I am a little less susceptible to catching a bug. Since my count is back, we restarted one of my anti-rejection medications. It felt very strange not taking it for over a month. We will gradually add it back into my routine as it can also cause my white count to drop. My other medication level is still hopping around which means I still go for blood work at least once a week.  But if that is all I have to do for maintenance, I am not complaining. Actually, it’s a bit of a treat getting to the clinic because Travis’ sister, Dana, works there and I always stop to visit her and her co-workers. Its a bonus getting to see her so often.

We had another momentous event on Tuesday as we also said our final goodbye and farewell to Andrew. That’s right, its official. We are empty nesters! After living with us the last two years away from his home in Salt Lake City to play junior hockey, he definitely became part of our family. We miss having him around already but we are happy for him as next year he will be attending Aurora University near Chicago, he will also be playing hockey. The three of us, Dana, and Lauren all went out for a “last supper” with him on Sunday and sent him on his way. We wish him only the best of luck for his future.

Yesterday we were at another funeral for another great lady. This time it was Travis’ great aunt (his grandmother’s sister). The priest on Thursday mentioned they had some sort of “sister act” going on since they passed away within a day of each other. Once again it was a lovely service for woman that is dearly loved and will be missed. It seems to be bitter sweet that the two ladies are now dancing in heaven together.

Monday was great health wise but it was also a very sad day, Travis’ grandmother passed away. She was a wonderful, sweet, kind, funny, costume wearing, dancing kinda lady. She is loved by her family and her community and you were considered lucky if you knew her. Today’s funeral was a celebration of a wonderful lady’s life who requested the “chicken dance”  be played on two accordions as we walked out of the service. Grandma will be missed by many.My lung functions are now at 62%! I still have a low white cell blood count and my drug levels are still taking a ride on a roller coaster but I am feeling wonderful. We were able to stop my one medication that is causing my white count to go low so hopefully within a week or so, improvement will be seen. I was even told I don’t need to be seen by a doctor for six whole weeks! I can’t tell you the last time I was able to go that long. I still have to have blood work taken weekly but those are fairly quick appointments. Since my transplant I still required the use of oxygen while sleeping. I was also told that after about thirteen years of sleeping with oxygen I no longer need to lug it around. We actually were able to drive our car, not our truck, up north because I didn’t have so many medical machines taking up space.

Today marks the six month anniversary of my surgery. It is astonishing what I am able to do in such a short amount of time. I jump roped forty jumps the other day and wasn’t out of breath! I could never even attempt that before my transplant. The lack of lung capacity and the oxygen tubing each would have limited me to ONE jump.

Thank you everyone for all the continued support in my recovery. I know my healing has been excellent because of all of you. Whether it was being on “Nikki watch”, helping with food, supporting my family, sending me a note of encouragement or simply saying a prayer, they have all made this journey incredible. I am forever grateful for all of you in my life. I am also forever grateful to my donor and their family for the greatest gift of all.

Sure getting a chance to use our snowshoes with all the snow we have been getting! Last Saturday five of us walked across the lake to our friends house. They weren’t home, or they were afraid to answer 🙂 Lauren didn’t have school Monday so we strapped the shoes back on and tried out walking art. We made a BIG heart that you can see in the snow. Did I mention before I love winter?

I was able to speak at my first drivers education class about the importance of organ and tissue donation since my transplant on Wednesday night. It was incredible to share a different story, a post transplant story rather then a pre. I then spoke to a group of wonderful people Thursday morning.

My medication levels are still jumping around so we switched one of my anti rejection meds to liquid, that way we can make minuscule changes. And my white blood cell count dropped a bit again so we decreased the medication. Luckily it hasn’t dropped enough to put me back on house arrest!

Today I tried something new, ice fishing! Thanks to my donor, I’m doing all these fun things I never thought imaginable. I thought about my donor and their family and said a prayer for them as I am able to do all these wonderful new activities.

Happy heart day. I am so HAPPY!! The anklet is off, I am no longer under house arrest. My white blood cell count is finally in the normal range. Although it is on the low end it is still normal. Since I have not had any outside food in over three weeks, I decided to splurge with my freedom. I had a coffee from Caribou, a hotdog from Dairy Queen, and stopped at Taco Bell for cinnamon delights. After my fast and furious food foray, I was probably due for a real meal.

I called Travis with the good news and asked if we could have a date night and go out for dinner. Travail just (re)opened their doors so we had to check it out.  Those chefs up in Robbinsdale did not disappoint. I am so happy to get out and interact with people.