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

Tuesday, January 1, 2019

Eleven Years!!!

I am so sorry, im a little ashamed when I saw my last post was almost over a year ago. Well take a deep breathe...I’m still healthy and happy and going strong. I recovered after 2 treatment of soul solumedral (IV STERIOD). The treatments sucked and I was grateful for them. I ended up losing about 15% FEV1 which just took some getting used to. I’m still at 74-77% but I haven’t hit the 90% since the rejection. I was so scared I was not going to around for my 10 yr transplant anniversary, my heart was broken as much or more than my lungs were. I recovered and celebrated my 10yr healthy and rejection free. Last month on Dec.10th I celebrated with a small party with family....11 years now...I hope to keep on hitting my goal to live and retire with my true love bryan.

2018 was a good year though. I stayed healthy.discovered new talents. And....oh wait....we came back From UPMC in July 2017 (after I was rejection free) Bryan and I BOUGHT A HOUSE (another one -we sold our first house right before the transplant. We technically sold everything we had that was worth anything & spent years to get back to where we were before I got sick. We purchased our 2nd home at the same time of year we sold our first home It was honestly 10 years when we gave up everything  with FAITH there wa a miracle waiting for me across the country.

Transplant life is amazing...and challenging.some days are easy and the hard days are hard.
I’m so thankful that God hears my prayers and will In fact answer  them...then let’s us choose whether to follow him With  faith or not.

So since aug we have been a host family for a 16year
It’s a neat opportunity to learn about Germany.

Quick usage. Love y’all,, happy new year 2019!!!!!!

Save a Life...Be Someone's Hero...    Be An Organ Donor!

Thursday, June 15, 2017


What more can a organ recipient ask for than 9.5 years of healthy rejection free life. The reality is rejection is real and even as far out and "safe" I knew deep down it too would happen to me to just didn't know when. I guess no one can really be prepared for rejection and what it does to our bodies. I certainly was not ready. Within 5-7 days of having some chest congestion I began to realize this was not a normal cold/cough. I had seen my local pulmonologist after just a couple days of getting my cough. He was arrogant and ignorant and his care plan put me in grave danger. I listened to my body and went over his head to my transplant team. My fev1 had dropped 35% and my entire body felt off. My husband got plane tickets that day and we flew across the country to my transplant center in Pittsburgh. I barely made the trip
And was admitted through the ER. Immediately they put me on IV antibiotics as well as inhaled.

I was shocked at how fast my body declined, I felt like I was dying. All the fears and emotions from
Before my transplant resurfaced a it was so incredibly hard to not break down..to stay strong and push foward. 

We watched Wonder Woman before heading back to Pittsburgh. I'm far from
Wonder Woman but I fight my battles head on and take on challenges placed before me with courage & hope. 

We've raised some money to help with all our travel & expenses at this time. The love & generosity people have shown to me is just amazing. I am such a blessed person to have my life filled with beautiful souls who wrap their love around me and give me strength to endure. 

Officially I'm in acute mild rejection. It's treatable and I will start the solumedral tomorrow -Sunday. I have my best friend and incredible husband by my side. I know God loves me & hears my prayers...this too shall pass. 

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

Sunday, May 21, 2017


I'm in Pittsburgh at UPMC and I have been here for just over a week. It all started about 3 weeks ago....

In Idaho a nasty cough was going around and I was trying ever so diligently to avoid picking it up. I thought I was out of the clear when I began to notice my energy level drop tremendously and within a couple days I developed a cough. I called my local pulmonologist and was quickly seen. However, I've now learned a very hard lesson on who to trust with my care. Everything he did (and didn't) do for me lead me down deeper into the rabbit hole of my troubles. He didn't order PFT's despite me asking, he didn't order a CT scan until it was too late. He NEVER consulted my transplant team. He put me in an antibiotic that did more harm than good and he laughed at the idea of needing a bronch. After just 5 days I took my life into my own hands and contacted my transplant Doctor directly. 

Within one day we were on an airplane from Idaho to PITT. I was admitted through the ER where they were expecting my arrival with orders from Dr.Pilewski (transplant expert) ๐Ÿ’•

They began treating me for an obvious nasty infection that was brewing out of control. I cultured B.cepacia along with psudomonious 

They took me in for a bronch (first one in 7 years)!! Bronchs are high risk with culturing b.cepacia and they only do them under circumstances of medical nessesity. They found what they suspect is rejection however it is nothing like what they've seen before. I have been in the UPMC Hospital for over a week and will continue to stay close to my center during the duration of my treatment. 

My husband has been with me and not working, we will be staying at the local family house where I can continue to heal. With all the travel, medical expenses and expense of being away from home we need some help. 

If you can help please do. If you can share my story & gofundme please do. 

I'm just 5 months away from my 10 year transplantiversary and this little bump in the road is not going to get me down. Prayers are answered in Gods way and despite the fear, stress, expenses and other emotions I have I am still humbled and grateful for everything my life is and my trials that make me stronger. 

I will post updates and pictures. 

Sunday, February 19, 2017

Bucket List: LADY GAGA!!!!!

So I'm a HUGE fan of Lady Gaga and I would love to see her in concert, I never thought I would ever  have the opportunity well....she's coming to SLC, UT on Dec 14th just 4 days after my 10 year transplant anniversary!!!!!! How I would love to go. But in reality something like that I would love to get VIP meet & greet tickets. Which I will never be able to afford. If anyone knows MS. GAGA please hook me up lol!! Wouldn't that be the most awesome way to celebrate my BIG 10 yr?? Miracles happen right? ๐Ÿ˜Š

Life Update:
I've been doing okay, I'm still in the appeal process with SSDI (it's been over 6 months now) they didn't continue my benefits despite me requesting it and getting my paperwork in...they conveniently misplaced it. My stress/anxiety has been through the roof despite my meds I take to control it. I've been going to a spine/ pain specialist for my back and joint pain.....it's so hard dealing with doctors who really know nothing or very little about CF and transplant. It's difficult some days to not lose hope. The days that I barely have the motivation or energy to get out of bed waking up with pounding headaches and back pain and when I do get up I still feel tired and lethargic.

I like to be pretty real and not sugar coat life post transplant here on my blog. But like most CFers not many people in my life would know or even suspect I feel terrible quite often. We are made "CF strong" so we keep up and live with the trials we've been dealt in life.

I'm praying I win my SSDI appeal, I feel like my quality of life would improve because just the added stress is effecting my health a lot.

Everything will work out, that I know....but it's just difficult sometimes to hold on and stay optimistic with all thn unknowns post transplant.

Save a Life...Be Someone's Hero...   
 Be An Organ Donor!

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