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

Sunday, October 10, 2010

Exciting & Exhausting!

Speaking on the patient panel was a super fantastic opportunity and I left there feeling soooooooo much love and support from all the CF family, staff. . .whoever was there. I feel so uplifted and I feel like all the pain, tears, fear, and hope continues to pay back and when I share my transplant story I can only hope that it gives others something that may have been searching for! I spoke to many people that where in the auditorium, most all of them were family members of Cystics. Another great speaker was a man who spoke about his wife and watching her as she gets sick and the sadness and emotions that he shared with us was just incredible and also painful for me to remember. But he also shared their hope and plans for their future. It was truly an amazing and wonderful experience for me!

The first speaker spoke about being an adult CF patient in college and the challenges that she is faced with. She sounds like she is doing very well, she was a beautiful woman who has set some pretty incredible goals for herself and I hope and pray she will reach them!

Next was a 34 year man who had a very interesting topic. . . having a 'normal' life with CF and working a very hard job! He is a prosecutor for the County DA?(I think). He was a charming man with a sense of humor and was very enjoyable to listen to. He's pretty amazing and is able to balance life, work and CF.

3rd was a girl who had given birth to 2 children. She spoke on wanting to start a family as a cystic. She was very detailed and gave a really in depth look into the process of her husband and her's decision to conceive a baby. She had a 3 year old and a 2 year old (I think) Beautiful family!! She went over the risks, the complications and the after effects to her health to be able to experience bringing a miracle into this world. It was also inspiring. . . .to truly follow your heart and do what you know will bring you happiness and fulfillment.

Following her was a young man who has a wife who has been put on oxygen. His speech was difficult for me to hold back the tears that has welled up in my eyes. I understand the pain that it is to have front row seats to the deterioration due to Cystic Fibrosis. . . his heartache and compassion for his wife was truly inspiring. His wife is an amazing and talented woman and she has all the prayers I have to offer for her! Thier journey is ahead of them and they know God has a plan. Thier faith is inspiring! His love was evident and it was a highlight to be able to speak to him after the panel discussions.

Then it was my turn! I had notes. ..but I didn't even glance down at them. I don't roll like that :) Luckily I was asked to speak on something that is far enough out that my emotions and memories of how difficult it was didn't spew out as blubbering crying. I shared a shorthand version of my transplant. I didn't have a lot of time and I wanted to have time to take questions. The questions were wonderful! The love was poured out to me. I still wonder how I got to where I am. God truly gave me sooo much more than I asked for. I just wanted to be healed. . . .but he had a bigger gift to give me. I get such love and support from the people I meet online, and now those I met at the conference today humbles me to know that God gave me something so miraculous that I can help inspire and bring hope. To share my burden that I carried until I could no longer and the strength that I KNOW I was given to walk and not stumble. Miracle happen. . . because I am proof.

To really top the day off I won in their door prize raffle!!! They were raffling off a lot of stuff . . .when they announced $25 gift card to the AMC movie theater I was like "I hope I win that! . .I hope I win something!!" I like to win stuff, who doesn't. When my ticket number was not read as the winner of the AMC gift card I was distracted and didn't realize what the next gift up for auction even was! They called out my number and I didn't even realize that MY number was a winner! Bryan's like "You won it, go up there!" . . .When I returned to my seat with just an envelope with a shiny sticker seal, I was shocked to find a Dinner for 2 at a very fancy restaurant!! A value of $125. . . .and just think of how excited the movie tickets made me. Needless to say I am glad I didn't win the movie tickets!!

JesterZ was hard tonight I think due to the convention and speaking and just a plain, flat out loooooong day. Too much thinking for my prograf brain! Also I would like to add that my amazing supportive husband who has to get up at 4am Sunday (so in 2 hours) and work tomorrow supported me through the whole day. He was by my side at the CF convention and drove me to Jester'Z and back home. . . .I have a pretty amazing guy.

Long post, sorry. . ..but it was a BIG day!!

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5 comments:

Jen said...

Glad to hear it went so well!

Lauren said...

Hi Jamie! I was the first speaker of the adult panel-- thanks so much for your kind words. I was so shocked to learn that you perform with JesterZ! My friends and I always enjoy going there for some laughs.

Thanks again for sharing your inspiring story. stay strong!

Anonymous said...

Hi Jamie :) I was the lady with the children who gave the horrible, long & embarrassing story!! LOL!! Thank you for being so sweet! I wish I had had more time to prepare and have been able to get everything I wanted to say out. I wanted to tell you that your story was so inspiring and brought tears to my eyes. You're so strong and I'm so happy to see you thriving!! I'm happy to have a someone to ask questions to and hear about all in your life. I only knew one lady with cf and unfortunatley, she passed about a year ago :(. She was at the clinic also but due to Hippa, I can't find much out about her!! Anyways, I'm so excited to follow your blog and again wanted to tell you how great you were with your speech and very inspiring as well!!! Much Love, Lisa

Jamie said...

Lisa,
I must say you answered many questions that I have always wondered about when it came to CF and having children. I had a really close Cyster who had 2 daughters, they were the center of her world and her motivation to keep fighting. She passed away just 2 years ago, she was 39. Her daughters were 13 and 18. I am so happy that you are able to have and enjoy your family. You give many other women with CF hope that they too may be able to have a family!

Tiffany Davis Brock said...

Jamie,
Thanks so much for sharing your thoughts, heart, and experiences on Saturday. I know David enjoyed talking with you and Bryan and we value your transparency and willingness to share what you have been through. Thank you!

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