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Saturday, February 5, 2011

Is it fair?

My heart is sad today. I have been following a Cyster, Britney, who lives in the Oklahoma City/Tulsa area and she is currently on a ventilator. . . Her story hits close to home with me. She went through the evaluation process and was listed for new lungs. She was listed in Oklahoma City. However, when she cultured a bacteria called Acid Fast Bacilli( The MAC) the hospital took her off the 'active' list. They will not put her back on the 'active' list until she does not culture this bacteria. On top of relating to culturing a bacteria that excludes us from being transplanted. . .her resent pft's revealed that her FEV1 was only 11%. My fev1 was 11% when I could no longer force my lungs to breathe, and I was put on a ventilator. Unfortunately Britney G. is following the same path as me. About 2-3 days ago she was rushed to hospital and had to be placed on a ventilator. So that's where she is. . .on the ventilator but not on the list for new lungs. I know how she feels and how her family feels, I was in that same position just a little over 3 years ago. I fear that she will not make it onto any transplant list and get new lungs. I know that miracles are possible & right now it is all in God's hands. I have posted before about 'transplant centers picking and choosing who they try to save'. Is it fair? Is it fair that a young beautiful woman is denied a chance of more life? No it's not.

I am praying for Britney and her family. Please do the same. They are trying to find a center that will help her and list her for lungs.  Lets pray she makes it to her miracle.

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2 comments:

Stacey said...

I am facebook friends with Brittny and am also very sad that her health has declined so quickly. We actually talked about MAC, as I culture MAC and mycobactrium abscessus. I know hers was being stubborn. It isn't fair sometimes...

Stacey @ www.confessionscyster.blogspot.com

David said...

This is a really tough position. When Tiffany had MRSA in her lungs they told us that she would not get listed until she could get rid of it. I do not know this family at all but if you know of any way that I can be of help, please let me know. I will be in prayer for Britney and her family.

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