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

Friday, March 29, 2019

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Almost 40!!

In about 2 weeks I will have the honor of turning 40! I honestly can't believe it. When I was growing up I watched many of my fellow friends who also had Cystic Fibrosis pass away at very young ages. . I hoped to live in to my young adulthood. I never really planned to go to college or get married because deep down I understood that with Cystic Fibrosis I would not need to worry about "life". I never gave up, I never stopped making plans, and I accomplishing goals I set for myself. I always knew in my soul that I was very blessed to have such an amazing childhood and many of my fondest memories are related to my cystic fibrosis.

So many things in life are unknown. I live with a terminal illness that has many different complications and limitations however, I live with a terminal illness that has taught me how to see the beauty in everyday. No one can go through life without trials, loss, fear, regret or love. My life has been a roller-coaster of all those things. Joy, happiness, love, forgiveness, laughter, and faith are all things we can choose to have in our life. That's the only thing that makes anyone's life appear "better". My life is no better or worse than anyone else's in the entire world. My life is just that it's  "My Life" and it will teach me how to be the kind of person I need/want to be. 

I am not really sure what feelings I am wanting to express in this post...I just love the life I have been given. I am not a person who likes grey skies and rainy days as most people don't. I do however love the feeling I get when I see the rainbow which accompanies storms. I would hope that everyone can choose to see the rainbow when it rains. We lived in Oklahoma for several years. The tornado producing storms that frequent that area scared me so bad when we moved there. Tornados can cause a lot of damage, suffering and disruptions and despite the advancement in Weather tracking it's still something we cannot control or prevent. In life we have tornados/storms that will roar into our lives and cause us pain, suffering and even total disaster but there is only one option after a storm: Clean up and REBUILD. I have never found focusing on what someone else 'HAS' ever to be productive in my own life.

I have had to endure my own life trials. I have had to learn what is important in my life. I have had to prioritize wants and needs. I have had to learn how to love myself so that I can love someone else. I have lived in denial. I have faced reality. I have been through more than I thought I could handle. I have had to find strength. I have had to be guarded. I have cried in silence and isolation. I have asked for help. I have been taught how to love and trust deeper than I knew I could.






Your life is yours and your happiness is your responsibility.

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

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.

AUG 2018 - HOST PARENTS-
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

Rejection

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

Infection/rejection

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) 💕

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. 

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