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

Saturday, October 24, 2015

"I Lived"

As I sit in this busy, loud, cramped airport terminal gate waiting to return home from my 8 yr Post Double Lung Transplant check up from UPMC...I have the capability to block out all the chaos and anxiety of traveling with a simple song. I have my headphones plugged into my ears to block out all the noise and focus on the words that speak to my spirit more than anything right now...."I swear I lived" (song by One Republic). Those words have so much meaning and power for me now more than ever before. 

My checkup with the amazing and compassionate Doctor Pilewski was better than I could have ever dreamed. Eight years after he and the team of surgeons, doctors & nurses saved my life when they had every reason to say "no, she's too sick...she has Cepacia...she lives too far away..." But they didn't. They took a chance on a young woman from Idaho who they'd never met...who just showed up in their hospital in desperate need of their help. And in the words of Joe (my doc) "Jamie, I'm glad we took a chance on you 8 yrs ago" those words bring me to tears every time I think about them. It's so true, they all took a chance...one that they didn't have to...one that most hospitals would not have done. He says he remembers meeting me...knowing If I didn't get a transplant I would have gone home to Idaho in a pine box. That's the absolute truth. 

After (almost) 8 years my donor lungs are clear and working fabulously! The X-Ray looked so clear... No white spots anywhere �� my Pulmonary Lung Functions are steady: FVC 103% FEV1 89-90% my weight is nice and healthy, kidneys are working good...my oxygen Sats were 98% and my blood pressure was perfect. Not only have "I Lived" but I'm living beyond what any medical professional would have thought 8 yrs ago. 

I know my health is not the "typical" results for every CF/CEPACIA transplant however, I am so very thankful. If I can do it so can other patients. It's worth fighting to "LIVE" 

We also enjoyed some sight seeing in Pittsburgh & Wash DC :) my amazing husband is truly lives me & takes such good care of me. He took care of all our travel arrangements so I didn't have to have any added stress. 

Even during my recovery after my transplant when I had to fight harder, dig deeper, and pray my hardest than I ever had my entire life...I Never gave up...remember to always have hope!! 

My life is amazing, and hard sometimes, but it's always a gift...

Wednesday, October 21, 2015

Going on Eight!!

I'm who knows how many thousands of miles above the ground in a cramped stuffy, uncomfortable jet that unfortunately for me (and the other 100+ passengers) smells like "old lady perfume"and the occasional mysterious fart...and I'm thankful for every miserable minute if it :) I've privileged to be traveling healthy and with my wonderfully supportive husband to Pittsburgh, PA. We've been enough times I feel like we should get a second vacation home here.  

Eight Years Ago: I had almost lost hope for ever receiving the life saving surgery that I desperately needed. Cepacia prevented hospitals from accepting me and every day I became weaker, and lost a tiny bit of more hope. I had become a frequent flyer on the 6th floor at the Pocatello Hospital. I feel like everyone was preparing to say their "goodbyes" since it was obvious to everyone (but me) that I did not have much longer to spend time on this earth. 

I remember vaguely as though it's a dream and not my reality...I struggled to get myself out of bed. A bath took most of my energy & whether to do my hair and makeup was a hard decision to make everyday.  However, I stayed strong, enjoyed the life I had. I didn't want pitty, I was too strong for that. I was however shown much compassion. 

We Sold our home that we had built 8 years of memories in and that was a sacrifice that my husband made so he could better care for me. Our first home, our first Christmas, our foster kids that we had taken in...many laughs and many tears gone and we only had hope and faith that God had a plan for me.

I know people who post things on Facebook like "share this and say "AMEN and you'll be blessed within 5 days....." 
I'm here to testify that GOD knows us and he prepares blessings and even miracles but we must have faith to do the hard things, to do our part. Live our lives so that we can do what it takes to receive the blessings we ask for.  

It was honestly so difficult to accept that GOD needed me to travel across the country in order to receive the blessing he had prepared for me. Like so many it's easy to want blessings on OUR terms, but that's NOT how it works. So I traveled to Pittsburgh even though it was ludicrous and no physician would have told me I was healthy enough...because I was not. I spent the last week of life my disease ridden, weak, expiring body had traveling on nothing but FAITH & a lot of HOPE! 

So as I now travel back to Pittburgh almost 8 years later, despite not being able to afford it, and wishing that someday we might be able to go somewhere on a real vacation, I am filled with happiness and joy. 

I have seen post double lung recipients live beautiful but much shorter and harder lives than me. I live with some survivors guilt...which makes me even more thankful for everyday I wake up, I have done things I never dreamed I would do. 

In my eight years with my donor angel lungs I've seen Bryan complete school, traveled and lived in new places, I've done professional Improv, worked with a Casting Director, been in a movie, seen my nieces and nephews grow up so much, I went back to school and I create beautiful works of art on people's nails...I've made new lifelong friends in places far from my home in Idaho. I've spent eight more years building memories with my amazing husband...I see my miracle continues all these years later. I have had no major complications with my lungs. I had carried my burden of CF for 28 years and when I could no longer carry it, the Lord took it from me. 

That is what Faith is for me. That is how I know without a doubt that my Heavenly Father knows "ME" and loves me. No one can take that away and everyday with every breath I am reminded. I'll never forget, i'll never be ungrateful and I'll always love my selfless Donor and her family. I'm thankful for stinky, cramped, relentlessly expensive & exhausting trips to Pittburgh because this is all part of my miracle that I asked for and GOD gave me. 

Tomorrow I have my appointments and I'm stressed and worried but I know I'm being watched over and I have many people who keep me in their prayers. I know that no matter what the Doctors say...I'm still blessed beyond what I deserve. 

Tuesday, October 13, 2015

October, Nails & Pittsburgh

October is one of my favorite months! I Love Halloween and well...Halloween Nails. I designed these and pre made the acrylic 3D charms. 

These are my natural nails shaped into spooky stiletto nails I really love what I do.
Next week I have my lung transplant clinic in Pittsburgh.  I'm praying for a healthy report. I'll be 8 years post in just a couple months! I'm a little stressed about the expenses of getting there. Bryan is going with me. I think our flights are taken care of but I'm praying I can raise money for the hotel, rental car and food costs. I love Pittsburgh but just once a "real vacation" would be nice *dreamin* 

I'm blessed everyday with life and opportunities to be humbled by my challenges some day though Pittsburgh will not be the only place we get away to...lol.

I'll be making decals if you want one or just want to donate to my trip to see my transplant team, just use the link on he right side of my blog (PayPal) thanks so much for supporting my blog & following my journey. I'm going to cut decals this week & get them mailed out 
I'm doing "breathe" & "donate life decals". $10 donation gets ya one 

Halloween & my nieces bday is at the end if the month!! So baby great things happening in October life is good!! 

Thursday, September 24, 2015

Life...death...what's next?

As I approach my 8th transplant anniversary this December I have had times in my life to ask myself these three burning questions. Why is my life important? Why didn't I die 8 years ago...why was my life given back to me...and when I have to face it again, will I be ready to join the afterlife? 

Death is a complicated, scary and a beautiful thing. Death is complicated because I was there...staring at the veil between this life and the next and it's there that I found peace and all my pain and fear was gone...but my family was unable to feel that. I couldn't possibly help them understand. It's scary to look at you're family and know they'll miss you and thier hearts will have an empty space that you once filled. For me I have felt the love and comfort the afterlife has to offer. It's a beautiful feeling..no pain, no worry, zero sadness...just joy and love surrounded me. 

Before my transplant every breath I took felt like I was breathing shards of glass it was painful to force my lungs to struggle to take a single weak breath of air. My body was a prison for my soul at that point I could no longer bear the burden in which I had promised God I would carry until I could not carry it any longer. I knew the moment I was too weak and gave it over to the Lord & at that moment it was taken from me and I was overwhelmed and consumed with painless warmth and my fears were calmed...I experienced pure peace emotionally & physical peace. I didn't want to be put back into my worn out broken body. It was ravished with disease and without it my spirit felt for the first time excitement for what lied next.
It wasn't my time to go home...my body was repaired with new parts donated through a pure love from another Human Being who didn't know me. A selfless gift of life...of love.  I woke up days later grateful for my gift...but honestly I was okay with whatever GOD had prepared for me. 

8 years later I'm still breathing with my donors gift of her lungs...every day I'm reminded of MY miracle. It never loses the sacredness I hold it to. I was given a choice to return home to my heavenly family or stay here with my earthly family...there's no right or wrong answer...there's only my answer. I hope for many more years with my husband & family but when my years come to an end...know I have no regrets. 

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