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

Wednesday, October 13, 2010

Be your own advocate

I am struggling a little on how to put into words how I am feeling right now. I would hope that adult CF patients are starting to realize more and more that lung transplants do add years of quality life. I would also hope that if/when the signs of end stage CF become a reality that us adult CF have the knowledge and tools to make an educated choice.

I am the first to admit that I lived in denial. My disease was invisible to the outside world if I chose not to share it. I looked like I was fine. . . but there comes a point when CF cannot be hidden. 'End Stage CF' was something I HATED reading in my medical charts. I hated the thought of being put into a category, feeling like my future was being wrote off. The reality was that end stage cf was taking control of what little time I had left. The catch is that we CAN do something about it. We can make a choice. We must be our own advocate!!!

If we don't take charge of our future with CF then who will? My point is that we need to recognize the signs and prepare to be able to make a choice. Please be open with your CF doctor and family. Discuss the option of a lung transplant. Many things are changing and improving. Pittsburgh and now other hospitals are using a procedure where only 2 incision are made on each side of the chest eliminating cutting the sternum. Rejection medications are being improved and since 2005 the way patients are listed is based on need and not just a waiting game! Also, most statistics can be outdated~ Get the facts, be educated so you can make a good informed decision.

Don't be too quick to eliminate your options. Look into lung transplants before you get 'too sick'.

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1 comment:

Nancy said...

Excellent points, Jamie! I am praying the Bryan finds a great job in a place that will be a comfortable home for you.

I love you very much! Nancy

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

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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