I have heard thy prayer, I have seen thy tears, behold I will heal thee.
2Kings 20:5

Monday, May 16, 2016

Invisible Disabilities

This is what my Organ Donor gave me...more beautiful, fun, exciting days with my awesome husband who loves me more than I thought was possible. We've been laughing & crying together almost as many years since my transplant than before it...what an amazing gift. 

I smile a lot through the tough times though. Transplant life isn't always easy. I'm not the same person I was before and in a lot of good ways...but I can't forget or ignore that it's a trade. I traded one set of problems for different ones. I honestly consider myself pretty laid back, easy going and a little independent and adventurous. I am optimistic by nature, so the side effects of several of my medications have been hard to deal with. I have had anxiety since my transplant. I never had a panic attack until after recovery, which was hard to accept. There's a level of fear of losing everything again at any time...my lungs rejecting, putting Bryan through watching me die AGAIN, going on oxygen again, getting dementia again, my medical costs stress me out & the thought of future unknown medical expenses stresses me out...so every cold, cough, sneeze, infection scares the crap out of me. I could be one bad cold, flu, or pneumonia away from rejection...I could go into rejection for no reason at all. The stress overwhelms me. Also, My meds make me sensitive to too much noise & loud social situations. I try to deal and appear as normal as possible. There's so many times I want to scream "shut up!!" But I don't, instead I take a klonopin (or two) and find a quiet place to reset myself.  I have an amazing man who helps me through my anxiety, depression and fears. 

I don't like writing posts focusing on the hard facts about life after transplant...but I think it's not openly talked about enough and that can make those of us who are experiencing things like this feel broken. We're not broken though, and we're not weak...we just have different problems. Is a learning curve. We aren't alone. So although I put on a strong front to help give others strength, the truth is sometimes I'm not strong. It's hard having bad days, but the good days are definitely more frequent and worth it. 

So look at my picture and remember I am the face of an invisible terminal chronic illness. I'm stronger than I even know I can be. I am happier than I can put into words while battling a lot of internal & emotional fights. Life post transplant can be amazing, wonderful, beautiful and very scary...it's a love hate kinda life :) 

If you're reading this and you're either pre or post transplant & you have questions or just want support, please feel free to comment or message me. 

Friday, April 8, 2016

Turning 37!! Whoot Whoot!

Next week I'll celebrate turning 37 years old (and even better, I still look 21) haha!! 
I LOVE getting older. Living with Cystic Fibrosis is difficult, I honestly didn't think I would live to see my 18th birthday and look at me now! Of course I wouldn't be celebrating birthdays now if it wasn't for my Donor Angel. She selflessly gifted parts of herself to others like me and gave us hope & life. 
Organ donation is definitely very important and it's a beautiful gift to many of us who need people to save us. You are our Heroes ❤️ 

I've been enjoying doing nails (of course) and looking forward to the warmer Idaho summers so I can get out more. 

Health Update:
I'm doing good. My blood sugars are under control, my lungs are steady and my kidneys are still working ๐Ÿ˜Š however, I'm dealing with a lot more anxiety and stress. I'm hoping to get into a specialist to help me deal with some of my medications side effects. 

Enjoy some pics ๐Ÿ˜Š

Super bright & fun spring natural nails with handpainted sunflowers 
Handpainted Ballerina Gels in a beautiful ombrรฉ 
Handpainted Safari Natural Nails 

So as y'all can see I'm going on 8.5yrs post double lung transplant...not bad considering that so many hospitals told me in 2007 that I was not a candidate due to Cepacia and that I wouldn't even survive the surgery. I'm living my dreams working hard to stay healthy and beating the odds every day. 

Friday, January 1, 2016

Eight & Seventeen...

December 10th I celebrated 8 years breathing with my angel lungs. It's crazy to be so healthy so many years out...with the statistics for Cepacia and transplants in just feeling really blessed. 
Bryan threw me a nice little party & surprised me with a beautiful anniversary ring. I'm so lucky to have such a loving & supportive spouse. 

Seventeen...next week Bryan and I will celebrate our 17th wedding anniversary!! Now that's incredible. I remember when I was young, growing up with CF, I didn't expect I would live to be an adult. It's amazing that not only did I live to be an adult, but I've been married and enjoyed 17 years with my best friend, my biggest supporter, my reason to keep fighting! 

Life is good!! I'm healthy, I'm happy, and everything that I've been through in life has molded me into the person I am today. I am very blessed!! 

Saturday, October 24, 2015

"I Lived"

As I sit in this busy, loud, cramped airport terminal gate waiting to return home from my 8 yr Post Double Lung Transplant check up from UPMC...I have the capability to block out all the chaos and anxiety of traveling with a simple song. I have my headphones plugged into my ears to block out all the noise and focus on the words that speak to my spirit more than anything right now...."I swear I lived" (song by One Republic). Those words have so much meaning and power for me now more than ever before. 

My checkup with the amazing and compassionate Doctor Pilewski was better than I could have ever dreamed. Eight years after he and the team of surgeons, doctors & nurses saved my life when they had every reason to say "no, she's too sick...she has Cepacia...she lives too far away..." But they didn't. They took a chance on a young woman from Idaho who they'd never met...who just showed up in their hospital in desperate need of their help. And in the words of Joe (my doc) "Jamie, I'm glad we took a chance on you 8 yrs ago" those words bring me to tears every time I think about them. It's so true, they all took a chance...one that they didn't have to...one that most hospitals would not have done. He says he remembers meeting me...knowing If I didn't get a transplant I would have gone home to Idaho in a pine box. That's the absolute truth. 

After (almost) 8 years my donor lungs are clear and working fabulously! The X-Ray looked so clear... No white spots anywhere ๐Ÿ˜Š my Pulmonary Lung Functions are steady: FVC 103% FEV1 89-90% my weight is nice and healthy, kidneys are working good...my oxygen Sats were 98% and my blood pressure was perfect. Not only have "I Lived" but I'm living beyond what any medical professional would have thought 8 yrs ago. 

I know my health is not the "typical" results for every CF/CEPACIA transplant however, I am so very thankful. If I can do it so can other patients. It's worth fighting to "LIVE" 

We also enjoyed some sight seeing in Pittsburgh & Wash DC :) my amazing husband is truly lives me & takes such good care of me. He took care of all our travel arrangements so I didn't have to have any added stress. 

Even during my recovery after my transplant when I had to fight harder, dig deeper, and pray my hardest than I ever had my entire life...I Never gave up...remember to always have hope!! 

My life is amazing, and hard sometimes, but it's always a gift...

Where to start to learn about my transplant!

Thank You for taking the time to read my blog. I am hoping that through this blog and my experiences that I can bring hope, faith and strength to all that may be living with Cystic Fibrosis, CF with Cepacia and Lung Transplant recipients. Information and blog entrees start Nov. 07. My Double Lung Transplant was on Dec. 10th 2007. Please feel free to read about my experience and ask me any questions! My email address is jamiebug77@gmail.com

My Story - Pause Music Player First

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My Testimony

It's hard to put into words how I feel toward my Heavenly Father and the Savior. I have so many reasons to be thankful for what I have gone through & endured. Because of my trials in life I have gained a strong testimony of Faith. I have always had Faith in the Lord and in Prayer. As I faced the decision to get a double lung transplant I had to rely on faith to make the choice.....By listening to the spirit, I was guided to Pittsburgh where my life was saved. I believe prayers are answered. I have always tried to follow the philosophy of this: If I do what the Lord expects of me, he will give me what I want & need. That has always worked for me. I Believe in MIRACLES..........My life on this earth is a miracle- I prayed on my knees for years to be healed from my lung disease. I knew that through a priesthood blessing (if it was God's will) I could be healed. So many times I thought he would heal me instantly...my faith was tested as I continued to get sick and no cure was in my future. I turned to prayer....I talked to my Heavenly Father, I cried to him and he heard me and he healed me by guiding me to Pittsburgh and guiding the surgeons hands. I learned humility, and thankfulness. I realized that we need others to lean on and we are supposed to strengthen each others testimonies. I learned that the hardest things we'll do are usually the greatest blessings in our life. I was able to experience a lot of things during surgery and I know I had comforting angels in my ICU room. THe Lord knows each of us by name and he will never leave our side. We need to remember to stay close to him and have Faith that he is watching over us. I know this for a fact! I know that following the gospel will bring us true happiness- the world will tell us otherwise, but I know I am truely happy & living the gospel has brought me that. Amen