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

Thursday, May 5, 2011

Day 5

So day 5 is all about my diet. Well once again I have had to make changes to that since my transplant. Before my transplant I was on a 4,000 minimum calorie intake a day to maintain my weight of about 92-95 lbs. I barely maintained that. I ate whatever I wanted and how much of whatever I wanted every day. Twinkies, 5lb bags of gummy bears, Mnt Dew like it was going out of style, candy, root bear floats, not to mention HUGE meals and I drank 'Boost Plus' to supplement calories and protein and all that in between my meals. BUT things changed once I got lungs and my body didn't burn so many calories trying to breathe.

No my diet is more like a normal person. I don't eat candy very often. I DON'T eat twinkies and I limit my gummy bear intake to small packages every once in a while (once a month maybe). I switched to Diet Mnt Dew (which I ended up liking better) and I drink a lot more water. I try to eat smaller portions and for the most part I eat healthy. Regular food with veggies. My weakness is pasta & I probably eat too much of that, but oh well. . .I'm not giving up my pasta :)

I still have to take Creon with meals and snacks, however, since my transplant my bowels have improved a TON and I rarely get CF Gut upset and I usually only have one bowel movement a day (I know weird information but to the CF world that question is asked a lot by doctors) It's a nice change. It was a hard change. I weigh the most I ever have. I have been exercising regularly pretty much my whole life and that hasn't changed. Post transplant meds seem to easily cause weight gain and I was getting a little "muffin top" which I didn't care for, hence the P90X workout. I work really hard to stay in great shape so my lungs have the best environment to survive to in :)
Yesterday was a crazy long day. I am on a movie set for the next while. . .so I will try to keep up with blogging, but no promises :) Day 4 is kinda late, but here it is. I did it on FB just didn't get time yesterday to blog it here.
So illness and admissions. My first hospital stay was when I was in the 6th grade. I started going in pretty regular after that. My first hospital stay was at Primary Children's hospital in SLC, UT. I really had a good experience. I met so many other sick kids and made some life changing memories and friendships. I met a girl who was only 14 and struggling with anerexia. That was an incredible vew into that horrible disease. We became very close and I still have the pictures from that stay with her :) We kept in contact for a while after I was released and about 6-9 months later I even received a letter from her with a photo . . .she got better and she thanked me for being a part of her life even if it was a brief moment. I treasure so many experiences like that. I don't despise my hospital stay becuase when I look back I learned something or gained friendships that impacted my future and helped mold me into the person I am today.

My worst illness would have to be when I was diagnosed as culturing Cepacia. It was just about a month before CF camp and that year the camp theme was "The Oscars"!! You can only imagine how excited I was for camp that year. I loved CF camp more than anything. It was the one true 'perk' to having CF. Soon after culturing Cepacia I received a letter telling me I could no longer attend CF camp. I was not able to go to camp that year or following years. It was really hard for me to deal with. That is probably the only time in my life that I honestly HATED CF, but more so I HATED Cepacia. But life goes on and I was invited to attend CF/Cepacia camp that consisted of a handful of us young adult/adults that also cultured Cepacia. Those were also years I treasure.  So that's my worst "illness" aside from CF being a pretty bad "illness" without adding anything to it. LOL

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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