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

Thursday, April 2, 2009

Pondering my life with CF

I was laying here and watching youtube (love it!)....I was watching several Cystic Fibrosis and related videos. I found myself reflecting on what it was like before my transplant and the thoughts I had about transplants and my future. Living life was never hard for me.....yet living life was very challenging most of the time. I felt scared- I felt like no body around me really could understand, so I held a lot inside. I am not going to get all sappy and "feel bad for me" routine, that's not me...but as I watched this video (click "video" to watch it), It brought me to tears. I KNOW what they feel like.....they are not alone- Cystic Fibrosis is a very terrible disease, and yes like some of the Cystic Fibrosis world, the thought of a transplant is scary. A LUNG TRANSPLANT IS NOT A CURE. This disease needs to be cured! Not just a temporarily band-aid. I am more grateful for my Lung Transplant than almost anything in the world, I will always treasure the gift of life I was given, but too many children and young adults chose not to go through a transplant- they need a cure......
*Did you know? Cystic Fibrosis is the #1 genetic disease that kills children and young adults in America.....
*Cystic Fibrosis affects the Lungs, Digestive System and Reproductive system
* Research depends on Private and fund raising efforts
*There is no cure.....
*Cystic fibrosis occurs mostly in Caucasians whose ancestors came from northern Europe, although it affects all races and ethnic groups.
*About 2,500 babies are born with CF each year in the United States
*Approximately 1 in every 20 Americans carries an abnormal "CF gene" with no ill effects. For the most part these 12 million people are unaware that they are carriers.
*Life expectancy even with new medical breakthroughs and treatment is only mid 30's
*You can HELP.....visit www.cff.org (.90 cent on the dollar goes to research)

4 comments:

Amy said...

I have also heard (we were talking about it in chat the other night) that the Irish have the highest rate of CF. And I'm Irish and that night in chat a few of us were :) The guy posted a link to show us and I wish I had kept it!!!! Darn it, but that was my little tid bit of info LOL!!!

Somer Love said...

Im Irish too!!!

Jamie said...

I am part Irish and I think a little Scottish....

Amanda said...

What a great video. You are such a strong and beautiful person Jamie! I am amazed by your strength and courage!

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