featured_memberLiving With CF

Amber’s Cystic Fibrosis Miracle

Introduction

My name is Amber Newman and I’m twenty-five years old, soon to be twenty-six. I was diagnosed with CF when I was seven months old due to failure to thrive. I’ve been a member at CysticFibrosis.com since I was twelve years old. I’ve been able to connect with an abundance of others living like me through chat rooms, the forums, blogs and private messages. I have provided positive encouragement and hope to the members of CysticFibrosis.com. I have shared my creative talents with the community during the toughest times of my life. Between the daily chaos full of medications and exhaustion, art is what keeps me sane.

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My First CF Walk-A-Thon May 1993

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My first Picc Line. January 1999

My Life Pre-Transplant

I lived a relatively normal early childhood taking dance lessons every year, played soccer for one season, rode bikes and played outside games along with my friends. I missed school only during my routine doctor’s appointments. I lived a life like all the other little girls, attending sleepovers, dressing my Barbie’s in the latest trends and caring for my precious doll babies. I set up a hospital in my bedroom to tend to my sick American Girl Dolls. I wanted to be a nurse just like the ones that cared for me.

My health began to slowly decline just as I was entering fifth grade at ten years old. During that time, I went through a few surgical procedures to help keep me stabilized. My parents decided that it was best for me to get a Port-A-Cath for long-term I.V antibiotics and a feeding tube (MIC-KEY button) for extra nutrition. Unfortunately, I also started showing signs of Cystic Fibrosis related diabetes. I depended on shots for insulin. Along the way, I developed progressive hearing loss from extended use of an ototoxic intravenous medication called Amikacin, which eventually lead to complete hearing loss and deafness over the course of one year. I was able to learn sign language and became quite skilled with lip reading. At the age of thirteen my small fragile lungs had become damaged beyond repair from years of respiratory infections. No amount of medication was going to keep me alive. I was in respiratory failure. I was placed on the double lung transplant waiting list at Pittsburgh Children’s Hospital in March 2005. I struggled to breathe despite wearing oxygen all day every day. I couldn’t leave the house for long periods of time for many reasons; my oxygen tank only lasted a few hours, I had I.V. medication that needed to be kept refrigerated and I would become easily exhausted with little movement. I couldn’t walk across a small room without gasping for air. I simply couldn’t enjoy a moment of laughter without physically getting sick from laughing too much. I had to bring my wheelchair everywhere. In most situations the only thing I could do was sit there and watch everyone else have fun. Even at home my freedom only went as far as my oxygen tubing would let me go. I was not prepared to die at my very young age. There was too much I had not experienced yet. I had so much left to live for.

Receiving a new computer for Christmas. 2004

Receiving a new computer for Christmas. 2004

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Celebrating my 15th birthday August 2006

Receiving The Call

I finally received the gift of life on March 13, 2007. It felt like the longest two years of my life! Due to further complications from previous kidney damage (before transplant caused by Amikacin) and ultimate renal failure from the anti-rejection medication, my mother donated her own kidney to save my life only 4 months later. There was a minor bump in the road during the first year of my transplants. My doctor noticed a spot on a chest x-ray known as “Post Transplant Lymphoma Disorder” He lowered the dose briefly on my anti-rejection medicine to resolve the issue. Thankfully the Lymphoma disappeared on it’s own and I didn’t have to go through any more major procedures such as chemotherapy. I haven’t had a lung biopsy in 8 years. I no longer wear oxygen or spend hours doing breathing treatments and most importantly I can breathe easily. I’m finally free!

Transplant surgeon, Dr. Victor Morell

ICU with Transplant surgeon, Dr. Victor Morell

Hospital therapy dog

Hospital therapy dog

Showing my appreciation

Showing my appreciation

My hero. Dad's biggest smile!

My hero. Dad’s biggest smile!

My Life Post Transplant

If you had told me I would be alive and thriving 10 years later while living happily with a husband I wouldn’t have believed you. During the past 10 years I have accomplished dreams I never thought I would see and I’m here now to share them with you.

On Halloween in 2008 after being deaf for nearly five years my life flashed before my eyes again as I underwent surgery for a Cochlear Implant. The device isn’t turned on right away. They have to wait until the stitches are healed. (About a month) During a beautiful fall afternoon I heard what I waited for all those years. The voices of “I love you” from the two people that never gave up on me, my parents. Two years later I had another implant placed in the other ear.

I went to junior prom with the boy who I hadn’t stopped chatting about since middle school. A wish comes true! I remember he even hand made me card right after my transplant. A year later I attended senior prom in a dress I will never forget: A mermaid silhouette that was a deep burgundy shade with glittering silver rhinestones all across the front. I felt like a beauty queen. After struggling to keep up with schoolwork all through high school I finally graduated in 2009. The summer I graduated I was able to meet my online friend who was on her way to New York City for her 16th birthday. We could hardly contain our excitement as we instantly hugged each other as soon as she walked to the doorstep! We had so much to talk about. My dad found love again that summer when he married my step-mom.

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Celebrating 1 year post transplant with mom & step-dad at P.F. Chang’s

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My first swim in the pool post transplant. No oxygen! June 2008

Senior Prom 2009

Senior Prom 2009

High School Graduation June 2009

High School Graduation June 2009

In September 2010 after being free from long tangled tubing for 3 years I finally agreed to try an insulin pump. I use the T-Slim pump by Tandem. My glucose numbers are significantly better today.

I was smiling proudly for my sister when I witnessed her walking for her Speech Pathology diploma at her collage graduation as well as when my husband earned his degree in Business Leadership.

I’ve had the opportunity to meet a few of my biggest idols. While attending summer concerts through the years I won meet and greet passes several times to meet my favorite singer, Jesse McCartney and last year I was beaming with joy after meeting my favorite author, Jodi Picoult.

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Meeting pop singer Jesse McCartney July 2009

Amber & grandma with New York Times best selling author, Jodi Picoult. October 2016

Amber & grandma with New York Times best selling author, Jodi Picoult. October 2016

I joined a church a year ago and let God into my life. I look forward to women’s bible study and crafts group every other week. One of my favorite passages from the bible is; God is within her, she will not fall Psalm 46:5. My faith keeps me strong through all walks of life and of course I wouldn’t have made it this far without the unconditional love from my parents and family. A strong support system can be extremely helpful.

Through the years I’ve learned new art techniques and have become better skilled at what I love to do. I’ve learned to appreciate every little moment as it comes. There are reasons to celebrate even the smallest things. I see my family and my husband smiling back at me through the exceptional times of my life and it makes it all worth it.

Celebrating my 21st birthday. August 2012

Celebrating my 21st birthday. August 2012

Amber’s Artwork

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The best thing that has ever happened to me post transplant is meeting my husband, my knight in shining armor. We met in October 2010 and dated for 3 years before he proposed to me during a quiet cold December night at home. I had the wedding I’ve always dreamed of. We pledged our vows during a beautiful orange sunset on Honeymoon Island beach in Dunedin, Florida. I married into a family that loves me like their own. I’m a proud aunt to a wonderful nephew who is full of life! My husband and I both brought each other out of darkness when we could no longer see the light. If there is one thing I’ve learned about life so far it’s this; Attitude is everything. If you don’t think there will be light at the end of the tunnel then there won’t be.

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Sunset Wedding. Honeymoon Island State Park

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Dunedin Golf Club

Final Thoughts

Unfortunately life after transplant isn’t 100 percent normal. My lungs are free of CF but everything else is not. I still struggle with maintaining my weight, Cystic Fibrosis related diabetes, reoccurring nasal polyps, being hard of hearing and suffering from depression from time to time but despite every obstacle I face I choose to be thankful for what God has blessed me with each day. There are beautiful souls all around us. Don’t give up. Choose happiness. Choose life.

Amber enjoys spending time shopping, reading, making crafts and blogging. You can find out what she’s currently reading and crafting on her blog A Creative Newmie

Disclaimer: Post transplant life is different for everyone depending on your disease, medications, how your body reacts and other medical conditions you may have. What has worked for me may not work well for someone else.

 

 

 

 

7 Comments

  1. Tracy
    June 17, 2017 at 8:26 am — Reply

    I’m Amber’s mother. We’ve shared so many memories together. Some bad but also many very happy! I would have never thought God would have given me such an amazing daughter to be so proud of! I’m blessed to have Amber in my life. She’s my hero, my hope & my belief in miracles created by our Lord & Savior! When times were tough she never gave up. Not once did she ever say “I can’t do this anymore “. I would not change one thing if I could for I am the person I’ve become through my experiences I’ve shared with Amber. I look forward to reading her blogs as it brings back memories & reminds me that God does truly exist & miracles do happen! I love you more than you know & I’m so very very proud of the woman you’ve become! I’m looking forward to your next blog. Blessings to you!

  2. Darrell
    June 17, 2017 at 9:33 am — Reply

    I am Amber’s stepfather and I had the chance to meet the strongest person in my life over 20 years ago. Amber is a woman of great faith and was blessed by a family we don’t know, who donated their child’s organs to not only save Amber but other people. Amber is my hero and has a heart of gold. I am so blessed to be with her though the years of good and bad times. I am so proud of her and always wish her the best. She is a part of my heart and I will be there for her always. God Bless you Amber!

  3. Darya
    June 17, 2017 at 9:46 am — Reply

    Amber you amaze me and you always will. When I think about those scary years waiting for the lung transplant and how we almost lost you and now I see a beautiful young lady who is living and loving and spreading that love and story of life. Well all I can say is you amaze me. God has been beside you since the day you were born and He will always be beside you watching over you because of all the prayers that are being said for you every day by all of us that love you! You are in my thoughts and prayers always Amber, you are my hero. I’ve never met anyone as strong as you! As you live this beautiful life God has given you I just want to say, “You Go Girl”. I love you

  4. Norma Pohan
    June 17, 2017 at 11:26 am — Reply

    Amber,

    Thanks for sharing your story. It was a hard story to read. You are a shining light in a world that has turned so dark. To read everything you have been through and the love of God shining through you is an amazing testimony. My Prayer for you is continued healing. With just this story, you will give hope to so many people.

  5. Jan Chadwick
    June 17, 2017 at 3:16 pm — Reply

    I met Amber when she became friends with my daughter Jessica. I am thankful and blessed that God brought her into our lives. She is an amazing young lady and an incredible example of perseverance. Proud to say I know her! Stay strong Amber and continue to give God the glory. Hugs, Jan

  6. Linda
    June 18, 2017 at 10:07 am — Reply

    Amber, I am so proud of the young woman you’ve grown to be. Your story is an inspiration to all who know you. You are definitely a blessed young lady who has the support system needed to keep you putting one foot in front of the other every day. Thank you for sharing your story with us and I pray you have a long, happy & prosperous life. You are a true miracle and God walks beside you always.

  7. June 21, 2017 at 3:09 pm — Reply

    Dear Amber,
    I live across the street from your Mother in Palm Harbor. I remember the day you were married on Honeymoon Island and then saw all the beautiful photographs. You were a beautiful bride.
    They say that whatever doesn’t kill you will make you stronger….You are proof of this statement You are an amazing, strong woman and this blog will give hope to many. Remember with God’s love all things are possible.

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