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

Wednesday, March 4, 2009

Don't Give Up! (this is a long one)

I don't know if many of you know much about what my life was like the year before my transplant.....So I am going to let you into my life pre-transplant and share with you things that are very special to me that got me through the pain and gave me strength to keep fighting even though it seemed like a losing battle.
I will start almost exactly one year pre-double lung transplant.......

October 2006
Bryan and I had worked very hard to become foster parents with the hopes of being able to adopt. I knew I my health was deteriorating, but I wanted to share our love with a child who needed a family, even if it was for a short time. I was able to bring 2 siblings into my home and I treasure the opportunity to have that time with them. They were able to be placed with a family member....In January 2007, we took a 3 day old baby from the hospital....I was hesitant knowing I was getting sicker and weaker every day. It was very hard on me...Bryan was working out of town every day of the week and I was doing it all on my own....I didn't get sleep, I became exhausted and pushed myself way beyond my limits. I knew I needed to go into the hospital, but I put it off because I knew the baby I had in my care needed me & I had committed. After she left my home, I never regained my health that I had lost. But I don't regret a minute of it~ I needed that experience in my life.


April 2007
I remember so many times where I became exhausted when I did things like...get dressed...tie my shoes....bathe.....put on make-up.....fix my hair...have a conversation. I began experiencing horrific headaches and I coughed up blood daily, but I just dealt with. I had pain in my joints and didn't know why, but I hid my pain from my family and friends....I wanted to be strong and protect them from what I knew was happening to me. I seriously got through each day with IBprofin 800 and Mountain Dew!
I was hospitalized over my 28th birthday...It was then that I couldn't hide the facts anymore. I had been doing all the things in my life with oxygen levels of only 68%. (Normal is 95-100%) I was put on full time oxygen, everyone knew then how sick I was...I couldn't hide it anymore. I felt humiliated and I felt like I had failed myself and everyone who believed in me. I told myself I was going to beat cystic fibrosis my whole life.....I had big dreams of being a movie star...I was going to do great things with my life! But now I felt completely hopeless and useless. That was the day I began to cry and I cried every day after that for over a year.
I continued living my life and did all I could. I rode my scooter around town with my oxygen strapped to my back, I rode my horses with oxygen strapped to the saddle, I continued to teach my youth acting classes and directed a play "Big Bad" all attached to my oxygen. I wrote a play "Coyote Ugly" for the kids to perform in February....but I wasn't able to see it. I heard they did great!

I Found Strength through Music!
For my birthday I wanted a CD....I wanted a Josh Groban CD that contained a song I really liked titled "You raise me up"....Bryan accidentally bought Josh Groban's new released CD 'AWAKE'. I quickly learned it was no mistake....I listened to the CD and came across a song that changed my life and gave me the strength and hope to face my future. The song that is currently playing is that song..... "You Are Loved"..... I had been searching for reasons to not just give up my fight with Cystic Fibrosis, I hurt so much, my body was dying and I was forcing it to continue and I wanted it to be over. The words of this song spoke to my broken soul...my broken dreams and my broken hope. Josh Groban's voice was like an angel singing to me, answering all my many prayers I had in my heart. I believed the words he sang were meant just for me and they spoke so much truth to me. I listened to "my song" everyday...I listened to it when I started to lose hope, and felt alone. There were so many nights that I sat in my tub, because it helped the pain and discomfort, and I listened to the words to the song over and over with my eyes closed. I imagined the words were being spoke to me by my savior....promising me strength and reminding me of why I must endure my trials, not just for myself, but for everyone that loves me.

Dec. 2007
After being rejected by every transplant center that could possibly transplant me....I struggled to not give up..... My community and family raised money for me to travel from Idaho across the country to Pittsburgh..my last and only hope. I barely made it there and it was there 2000 miles away from all my family that I finally hit my last days...I was put on a ventilator after finishing all my pre-transplant testing....I wasn't on the list for lungs. My body had gone as far as it could take me, now my life was in God's hands and the surgical team. I was not going to return home alive unless I got a new pair of lungs. I only had 11% lung function and my carbon dioxide blood gas levels were 120....normal is 44! They could have told my husband that I was just too sick and would not attempt a transplant, but they all felt like I needed a second chance at life and they had an emergency meeting to determine my fate. My coordinator stayed late into the night Friday Dec. 7th.... and had me on the transplant list that night. My husband was overwhelmed in so many ways. I was unable to respond due to being sedated with the ventilator keeping me alive..... he was feeling very alone. I was in surgery Early Monday Morning.....only 3 days on the list and I had a match! That was a Miracle! A Miracle from God! I had to be cut all the way across my chest and opened up with a clam shell cut. The lungs were a little large for me, so the surgeon trimmed them to fit. I was sent to ICU recovery....Bryan had gathered my Josh Groban CD's and had even bought me a couple I didn't have, including his Christmas CD. He brought me a DVD/CD player with headphones so I could have my music. Recovering from the transplant was unbelievably harder than anything I had endured yet!
The pain was more intense than I can find words for, I had extreme dementia, waking terrors, nightmares, depression and I was confused most of the time. My body had a hard time adjusting to all the rejection medication. Shortly after getting off the ventilator, I was diagnosed with a cepacia Pnuomonia- which once again I had to fight to live. I had to get an emergency trachea and put back on the ventilator in hopes to again save my live. I fought through that and I felt very disscouraged and lonely.....I even began writing a will...giving my valuables to the people in my life. I thought I was going to die.. The words of the song came into my mind and I regained the determination and strength that I knew I had in me! I fought so hard, and I wasn't going to give up now! I had to wean off the ventilator slowly...it is really hard to come off it after so many weeks of depending on it. I was filled with a huge amount of anxiety every time they took me off....I felt like I wasn't getting enough air, my brain and the new lungs had to learn to work together. It took me about 1 week to wean off the ventilator. I was off the ventilator 5 hours the first day 7 hours the second day.....I set goals for myself and improved everyday. I finally got off the ventilator, but they kept the trachea in, just in case I turned for the worse again. It wasn't long before I finally got a speaking valve put on my trachea....the words of the song swelled in my heart that say "Everybody wants to be understood...well I can hear you"....I had been silent for about 4 weeks.....silent in my internal paranoid, fearful, unrealistic thoughts. I couldn't tell anyone around me what I was experiencing but I did know the one person who could hear me and understand me was my Savior. I had a slow and intense recovery. I was hospitalized for 53 days, and was 2000 miles away from my family for over 3 months.
I was really surprised how much one song meant to me. I found many things that gave me strength, but music is a very powerful thing!

March 2008
I returned home and life is better than ever! I continued teaching, directed another play "Seven Nasty Princesses", and now I am pursueing my life long dream of being a TV/Film Actress..........life is precious.... I owe mine to my Donor! Please 'Be someone's HERO....be an organ donor!'

6 comments:

Somer Love said...

Wow! Jamie this post was amazing! You truly are an inspiration! With Josh playing in the background and reading this post I got chills! Keep on keeping on!

Kim said...

What a beautiful post Jamie! I have a lump in my throat! You should consider writting a book with all of your experiances, I bet it would be so comforting to those who face the path you have traveled! I am so glad your doing so well!

Hanging out with the Riley's said...

I am sobbing like a linking sink!! I love hearing your story every time you write it and I WAS there. I am so thankful to have a sister and a best friend like you. You lift me up with your strength and will to fight. Thank you for choosing me to be your sister! I would not be who I am without you being my best friend.

Jack Phillips said...

Ok I haven't read this post yet, but browsing pics I had to laugh at the one with you apparently giving the "Thumbs up" to the camera with all sorts of crap hanging out of you! It was just so you.

Jack Phillips said...

Ok if your profile was open I could have just sent this to you... now everyone gets a chance to see it.
Maybe you should guess who I am. How many people have photos like this...
Younger Jamie

Anonymous said...

Jamie, I had no idea, you have always been an amazing person and an inspiration, I agree that you could write a very powerful book and get your message out to the masses. By the way, I am an organ donor and I hope that my body will help someone like you. Thank you for your posts they have changed my life.

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

My Story - Pause Music Player First

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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