I have everything a woman would want, except one thing…a set of healthy lungs.
Welcome: I’m starting this blog to simply share my story. To share my life living with cystic fibrosis while waiting for a double lung transplant. To help spread awareness of the importance of organ donation. I’m also hoping that it will encourage and comfort others while waiting on a transplant list. Life still must go on as normal as possible while waiting for a call that an organ has come available. I’m doing my best to make that happen.
I will be sharing the trials and triumphs of trying to stay healthy before transplant. I will also post pictures and videos of my life while anticipating my new lungs. I’m an honest and open person and talk from the heart.
As you read this blog please understand a few things. As I speak about my daily life I am not looking for sympathy, I’m not looking for pity, & I don’t want anyone to feel bad. I am only sharing what I go through on a daily basis. Everyone has challenges some of us just have a few more. I hope you enjoy experiencing my journey while waiting for “the call.”
~Nikki
My name is Nikki and I live in the Twin Cities area of Minneapolis and St. Paul. I’m currently on the waiting list for a double lung transplant. I was born with Cystic Fibrosis(CF), but was not diagnosed until I was 5 years old. At that time, the doctors told my parents I would only live until age eight.
When I was a little girl I went to school, enjoyed playing with friends and dedicated my childhood to figure skating where I earned spots on the U.S. National, International, and Junior World Teams. I was living life to the fullest! I wasn’t going to let CF rule my world, I was going to rule CF.
Since meeting the love of my life, Travis, 12 years ago, we have been blessed with having so much fun. We are no longer able to do many of the things we love nor see friends and family as often as we would like due to my health. But I am not stopping the fight against this disease!
I am now 37 years old and still live life to the fullest, but it takes a lot more energy! Cystic Fibrosis is a devastating genetic disease that affects the lungs and digestive system. Since I was diagnosed 32 years ago, advancements in medicine and therapies have helped extend the life expectancy of someone born with CF today to over 37 years.
Unfortunately, like many CF patients who survive into their 30’s, I have developed resistance or allergies to most of the available drugs. Additionally, I need to carry supplemental oxygen, spend four hours a day on therapy and two hours exercising – simply to survive. While this daily regimen has helped me in the short term, my long term survival depends on a double lung transplant.
I have been on the transplant list since June 2010. I not only want new lungs to live a healthier life but I want to be around to inspire others. To give strength and knowledge to other CF patients and families. I want to channel my passion for living into finding a cure for this awful disease! I also want to spread awareness for organ donation. With a new pair of lungs, I think I’ll have the energy to put forth the extra effort to help change the meaning of CF from cystic fibrosis to “cure found.”
Nikki's New Lungs 
Nikki,
Like I shared with you last time you were in the office, I am praying for you everyday! You WILL get that call and so many will rejoice with you when that happens. (Including me!!) Keep the faith & thank you for sharing your story. You are an inspiration to so many.
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Thank you so much Ellen! Great seeing you again today. Such a treat to walk into the office with you there.
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Dear nikki my name is al hulke,my brother gearold hulke had the very first double lung tranplant,at the university of mn,many years ago it gave him many years of life with his four girls,to enjoy please dont give up the fight and please know all our family and friends are on the doner list ,god bless you and you are in our prayers
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I ment to say five girls
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Thank you for sharing your story Nikki! Your courage, strength and passion are infectious and by sharing your story you are inspiring many others to contribute to beating this awful disease!
~Dana
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Nikki, my name is Sue and we met briefly at the Holiday luncheon at LifeSource. CF also runs in my family. I pray that you get your new lungs soon! Thinking about you ~ Sue Borgerson (Kayla’s Mom)
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Pingback: Making Organ Donation Personal - Everyday Man of God
Thank you so much for the kind comment and including the story on your website! Together we can make a difference for those waiting for transplants.
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THX
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Dear Katleen,
We hope your Irish eyes are smiling today and the Luck of The Irish will be with you on your journey.
Have a Happy St. Patrick’s Day!
Much love from your Irish buddies,
Maggie, Kelly and Rosie
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Thanks mom!
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Nikki-
Thanks for sharing your blog with us, I don’t think Chris and Mark know what a blog is, but I will explain it to them(: Glad we can be a part of your journey. Warmest wishes- Em
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Thanks Emily! That is too funny. I explain it as a glorified website 🙂 Thanks for all you do!
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I enjoyed your insightful writing. good contribution. I hope you produce more. I will carry on reading
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Thank you!
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Nicole, our families were friends for several years before you were born and when you were a little baby. In fact, I was one of the people who gave you a baby shower when you came into your family’s life…and drove through a blizzard to get there with my goodies! Our families drifted apart because we moved away and the busyness of life simply took over. Nevertheless, we have kept a tenuous thread over the years and your mom has sent me your information. Please know that you are in our prayers and thoughts. You are an amazing young woman and a vibrant spokesperson for your disease. Keep up the good work, pretty girl!!
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Thank you so much for the note! I told my parents about the note, it was fun talking about the fun times you used to have with them. Hope all is well with your family. Please keep in touch.
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Hello, just wanted to encourage you on your transplant journey. I’m a CF’er too and had my transplant at U of M in 2000. Since then my lungs have done well. I’ve had ups and downs, of course, but have been blessed with 12 years (so far) of smooth breathing. I spend most of my time taking care of my 2 daughters and working part–time. You’re in great hands with the team up there. Do you attend the support group meetings? I found them very helpful. Hang in there, you’ll be in my prayers.
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Thank you so much for the encouraging words Heather. That is fantastic to hear, 12 years, congratz! I do know I am in great hands and I love my health care at the U. I do attend group meetings once in a while, I have learned a lot from them. Take care and keep up with your smooth breathing!
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Hello Nikki. When we first me, I saw in you a determination and focus not commonly found. Best wishes to you to get those healthy lungs. I like the thought of thought of turning CF into cure found. You go girl. And a big hello to that guy Travis. Truly a remarkable man. Jack
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Thank you very much Jack. I agree with you, Travis is a remarkable man! I am truly a lucky girl!
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Nikki, you are truly inspirational! I so enjoyed spending time with you this weekend. I will be putting you on the prayer wall at my school. You will have 223 extra prayers everyday for new lungs. Thanks for taking in my boy!
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Thank you Tina. It was wonderful getting to know you. Thank you so much for all of the extra prayers, I will take everyone I can get 🙂 It is a treat to have such a nice son such as yours living with us.
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Hi Nikki – just want to let you know I’m fighting with and for you the whole way. You are my inspiration and I am hoping and praying that one day you will get that miracle call. All my best..
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Nikki,
I still remember watching you skate and laughing with you all those years ago. I’m so glad to hear that you now have what you’ve hoped for: a new set of lungs! My partner passed away very unexpectedly three years ago and we were able to donate his organs to help others in need. Hearing your story gives me hope that great people like you were helped during such a difficult time.
Huge squeezes and lots of love to you and yours for a super speedy recovery and a return to life of greater comfort and more fun!
Alissa
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Nikki since I left my last reply my daughter-in-law has also had a lung transplant at the university of minn also. We are so thankful for the wonderful gift she was given. We are also so proud of her bravery in this huge surgery! I continue to hold both in my thoughts and prayers. I hope you can meet Dakota while u r at the hospital Blessings to you both. Lena
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