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

Monday, December 7, 2009

what it's like. . . the END with CF?

December 7th, 2007

Two years ago today marks a day of pain, suffering, and in reality it should have been the last day my body was able to endure the ravishing effects of Cystic Fibrosis. I do not remember this day at all! I was awake, coherent (in a sense). I even had conversations and made jokes to the Doctors and Bryan. I did not know that It would be my expiration date. Here is what little video Bryan has of me that day after going to meet Dr. Pilewski for the first time. I told the doctor I didn't feel well. I wanted to sleep, it was hard focusing and I couldn't seem to catch my breath. I complained of not being able to sleep due to fear I would not wake up and massive headaches constantly. . . I was describing how I was dying. These videos are hard for me to watch, but it's the truth, it's real and this is how CF kills. Breathing hurt and I wanted it to stop. I couldn't keep going.

Now, picture Bryan. Knowing. Watching. Losing me right in front of his eyes and he could do nothing to make it better or go away. The only thing offered was to place me on a ventilator so my lungs would no longer have to try (and fail) at sustaining my life. The machine would do the work for me for as long as it could. He was faced with that decision. Knowing I would not come off the ventilator unless A: They decided to transplant me or B: . . . . . . . . . . . . .

That was Bryan's day of chivalry. He made the hard choice. He did what he knew he had to ~ he wanted to give me whatever chance I would have to possibly get new lungs. I told him it was the right thing to do. He sat by my side and comforted me, despite my inability to respond. He tells me that day I had been smiling and making jokes. He of course was crying and apparently I broke into song. . . . "Don't Cry for me Argentina.... " It was this day that I was finally peaceful. I fought a good fight and left it in Gods hands.

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Nancy said...

Wow, Jamie, it is so heartbreaking to see those images. Can you even believe how far you have come? I still can't grasp it. We both have so much to be thankful for.

I love you sweetie! Nancy

TransplantBuddies Around the World said...

Hi Jamie

Thank you for being so candid about living life with CF. You are an excellent role model for those who are waiting for transplants and for those who have received the Gift of Life as well. Your determination to never give up and keep on beating the odds is a gift from God.

With love
Happy Anniversary!!

Judy Stohl said...

Jamie - you have been an inspiration to me way before your transplant and all along your journey. I am originally from Idaho and my son (who lives in Rexburg) saw the article about you before your transplant. We then checked out your blog and have been followers all these years. You were in our thoughts and prayers through your transplant and the years before and after. It was also the first time we heard about the wonderful doctors in Pittsburgh. When we first saw the picture of you with Dr. P, we would have never imagined that we would be able to know this wonderful doctor. Thank you for letting us be part of your life and helping us to believe in miracles!

BreathinSteven said...

Hey You...

I'm glad you made it through all of that... I'm glad for yourself, and for Bryan... My wait was long and scary, but it was not nearly as painful as yours -- I do know that one of the things that kept me going was that I could not bear the thought of leaving my wife... I didn't want her to watch me go downhill for 10 years and then, at my very worstest, just check out. I wanted one good year with her, and at least check out on a more positive note...

I've had almost 10 so far -- 10 freaking amazing years... I know sometimes she wishes I would just shuddup (I talk a lot more now...) and she feels bad about being down sometimes when I'm chronically happy... But it's been quite wonderful. Congratulations on your 2 years -- these are wonderful milestones... I hope you get all that I've had and more...

Love, Steve

Jen said...

What an awesome sis in law and brother I have...It seriously makes me cry to think back to then and how scary it was for all of us. So glad you are still with us! It wouldn't be the same without you in our family! :) Love ya lots...thanks for sharing again.

armand said...

Hi Jamie,

Very touching stuff. Music is my life and job, and you've used it well in the different videos. It brought back many memories for me, from just 13 months ago. Only those of us who have gone through this can truly understand the battle and the pain. And while Bryan was totally there for you, you have been a true inspiration to him, I'm sure. Enjoy every day, although I think that's already your motto.

Armand (ajs)

armand said...

Oh, and RIP John Lennon. 12/8/80

Hanging out with the Riley's said...

This is an amazing post as always ladie ....I am totally bawling. I have posted everything I had of you on my blog as an anniversary too. I could imagin a world without you in it and that day I had to. I never want to have to do that again....but who wants to do that anyways. We are always pushed farther then we think we can be pushed. You are a wonderful fighter Ja. A beautiful ray of light to those who know you and for those looking for you. I love you everyday that I have with you. Remember I will always be your bestest sister...lol

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