JAMIEBUG CF CEPACIA LUNG TRANSPLANT

Where to start to learn about my transplant!

Wednesday, July 8, 2009

4th weekend fun.....

Being home in Idaho for the holiday was such a good thing for us. Number one...Bryan really needed the break from his stress from Phoenix and from me being sick. He had a blast at the lake! I however tried to stay out of the sun because I had a painful rash on both of my arms (probably from all the antibiotics) But it is much better now. We rode jet skis that Bryan's brother rented and went out on the boat.

Bella really enjoyed the water. . . . she is our little 15 pound Labrador :) She was running through the water with her tail strait and hopping like a bunny rabbit. She was cute when she submerged her face completely to fetch a stick. It's funny because everyone else was taking a bunch of pictures of their kids playing in the water and sand. . .and I was snapping like 100 pictures of Bella~ they probably thought I crazy. Oh and Bella even took a ride in the boat, but didn't want to ride the tube :)

I have been riding Princess a lot and finally I don't get so sore I cant walk for week. I am getting some nice muscle definition in my back and legs because I ride bareback (no saddle). Also my Pixydust was taken to the trainer~ I should be able to ride her next time I come back to Idaho. The trainer workds with her for 30 days. Woohoo!

I have been working a lot on a very special scrapbook. I have completed about 6 or so pages. . .I still need to finish about 6 or so more pages :) So needless to say I have been keeping myself pretty busy~ and spending a lot of time with my sister Nikkii.

Save a life..."Be Someone's Hero"....Be an Organ Donor

Wednesday, July 1, 2009

Stay Tuned!!

I am sooooo excited about what I am going to tell you. . . . . . . are you in total suspense now?. . ..

I know a lady who makes THE CUTEST personalized necklaces and charms. They are hard to describe but she is in the process of making a charm like my decal (the butterfly & "be someone's hero") I will post the finished product and price if you or anyone you know would like to purchase one. I'm not even joking, these are beautiful and hand made. So everyone please watch my website for more details and some pictures of the one she is making me~ The necklace along with everything about the charms are completely hand made! You will finally have something to show your support or thankfulness to organ donation fashionably.

Save a life..."Be Someone's Hero"....Be an Organ Donor

Monday, June 29, 2009

Reflection.....

It's so amazing to me how much we are able to overcome...we can be stronger than we think when we rely on the Lord. I have just been contemplating that a lot lately. I had a family reunion this weekend and saw many people for the first time since my transplant. I had many opportunities to reminisce about my transplant and reflect back on my struggles and trials in life and my transplant. It was weird to hear others tell me how sick I was 2 years ago and how they knew I didn't have much more life left in my tiny, frail, body. It's like another lifetime to me.....how easy it is to forget how tough every day was. There is no way I did it alone. It's kinda funny though~ I thought I did a pretty good job hiding how sick I was....I guess I only fooled myself :)

Before my transplant I had to worry I wouldn't wake up every time I fell asleep or hard it was going to be to tell Bryan "goodbye". . . now I find myself worrying (obsessing) over my lung functions and rejection. But I also get to worry about what I am going to do with my life and being a "movie star" someday.

I am diligent about checking my lung functions several times a week and I track my meds and Prograf levels closely. Prograf is the medication that supresses my immune system so my body does not reject the transplanted organ. I just had some blood work done and my prograf levels were REALLY low. . which can allow my immune system to put my body in "Red Alert" and try to self destruct. :) However, I don't show any signs of rejection and my medication has been increased to raise my level. It's a reminder to me that I still have a very serious medical condition. I still have a life threatening disease and must manage it day by day. . . but it is also a reminder of the miracle I was given. I can breath and be healthy as long as I take a couple of pills every day diligently. I think that the things we have to work the hardest for are the the things we appreciate the most. I never ask for an easier life. . . I just ask for life.

If I could have one more wish in my lifetime it would be to know more about the person who gave me a 2nd chance in life. I may not get that during my life now~ but I know one day we will meet and rejoice in heaven.

Save a life..."Be Someone's Hero"....Be an Organ Donor

Thursday, June 25, 2009

Hi HO, Hi HO It's off to work Bryan goes!

Bryan is at work....hooray! He is working hard mixing mud, cutting brick and every other chore the brick mason's have for him. We are blessed to have the opportunity for him to be able to work for my dad and earn money so we can return to Phoenix and he can continue school.

I am feeling better! I was able to ride my horse two times already this week...the rain finally stopped a couple days ago and its a total of maybe 80 degrees~ so not too bad. It's nice to have my family around and spend time with them after my infection scare! Since my transplant I undoubtedly know what is truly important in life. It's nice to have such a strong foundation and faith along with a wonderfully supportive and loving family! I am soooo blessed beyond anything one can ever deserve.

Hope all is well~ and keep praying for Cammi~

Save a life..."Be Someone's Hero"....Be an Organ Donor

Monday, June 15, 2009

On My Way Outta Here!!!!!

I was frustrated this morning when once again they wanted to skip my prograf until tomorrow.....so I asked why and I was told
"Your prograf levels were high so they are skipping them..."
I then replied. " How high were they?"
"They were 12.7..."
I said "My target is 10-12...so how is that high enough to skip an entire day?" I was concerned that by doing that my levels would become too low and once again the roller coaster prograf levels would begin again.

So I did what I know~ and that's take control...in a nice way.....I insisted they drew blood to check my levels. Then I emailed my doctor and asked him to clear some things up and shared my concerns with not seeing a doctor during the last week. He assured me that he was tracking me from Presby hospital but that there must have been some confusion with communication with the pulmonary specialist who should have been seeing me here at Magee.

He talked over my concerns and agreed with my conclusion. I am feeling better and am ready to be released to get back to life. I am going to have a chest xray today then I guess I am going to be set up for release tomorrow morning/afternoon. This is good news....because I am really missing my Bella!! Oh and really sick of laying around on my butt!!

Save a life..."Be Someone's Hero"....Be an Organ Donor

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MY BOOK.....

I have heard from so many people that I need to consider writing a book~ I don't claim to be any kind of a Writer..but I do have a secret I have been keeping..

I Finished my book
28 Breaths a Minute
*I will be submitting it to a publisher this summer and hopefully it is printed and available by next year!

Here's a Teaser.....

28 Breaths a Minute

“Do you feel like you've lived a good life?” the Cystic Fibrosis staff asked me, preparing to tell me I was going to die. I couldn't believe the words she had said to me. Of course I felt like my life has been good....more than good. I definitely felt like it was far from over! However the truth is I was dying and there was nothing the doctors could do for me -It was overwhelming. The constant pain and discomfort was getting difficult to live with, but as I sat in the cold, sterile, examination room I knew I was not ready to stop fighting for my life.

*Read my Post on March 4th...

*Please take the time to listen to the song my mom wrote and my Dad sings: "Jesus Know My Name"

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