I have heard thy prayer, I have seen thy tears, behold I will heal thee.
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Sunday, January 30, 2022

Sorry for the wait

I don’t really post much here on my blog, but I really should. My last post was celebrating turning 40...lol that was a few years ago. 

I found so much healing and peace when I was writing regularly. My transplant  feels like a lifetime ago yet I can still recall so many details. Life goes by so quickly yet memories can continue slow dancing in our heads and it feels like time stands still. 

I watched Salt of my Soul... The part when she was diagnosed with b cepacia, I watched as her doctors OVER REACTED and made it feel like it was an early death sentence. I was diagnosed with cepacia in the early 90’s I was around 13 years old. The rumor amongst the CF COMMUNITY was that cepacia would kill a patient in less than 2 years. I felt like the CF world wrote me off. I was uninvited to CF Camp, to clinic, to fundraisers...I felt like a leper, an outcast and I had no control over it. I was young and the new drug Pulmozyme was a very new drug breakthrough. I would be lying if I wasn’t scared... but I would also be lying if I didn’t become determined to prove all the statistics wrong. 

I feel like there are bad, good and better doctors/specialist. The best aren’t the ones who know everything... it’s not the ones who are driven by statistics, they are the ones who listen, they listen to new ideas, they listen to the person who knows the disease that is destroying them from the inside out. I was blessed to have the best kind of doctors and when I needed a lung transplant 15 years after getting cepacia I found the most incredibly brilliant doctor who waste best; and I found him in Pittsburgh at UPMC. 

My life is still incredibly awesome. Everyday I reflect on all the people who were involved and the team at UPMC. 

This year 2022 will be the year I dance into my 15th year with my Donor Angels lungs. Life is tough, scary and most times feels like the overwhelming odds against me is just too much. However everyday is a blessing, everyday is a day we learn, grow, and become stronger. EVERYDAY is a BLESSING. 


Ricky said...

Good to hear you haven't lost hope. For me transplant and I have CF is nothing I could ever do though. I would find the idea of somebody elses dead body parts inside me disturbing but I accept some can handle it eg you. I just hope your not in to much pain. God bless.

Colleen said...

So happy to hear that you are doing well!!! I think about you often and am excited that you are celebrating 15 years! I celebrated 10 this year.
Keep up the good work.

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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