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

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. 

Monday, July 27, 2015

My 5 steps to dealing with dying from Cystic Fibrosis

One of my most popular posts/blogs has been "dying from CF"...I find that both fascinating and surprising. So I figured I would do a follow up post and dive a little deeper into what I went through. This is my experience, but again I think most patients experience similar things. 

For me it felt like it came swiftly, but in reality it did not...I just wasn't willing to open my eyes enough to recognize it for what it was. Death by CF is a slow decline like the analogy of the frog and boiling water: Suppose you want to boil a frog. How do you do it? You could place the frog into a pot of hot water, but as soon as it feels the heat, it will jump out. So, what can you do? Put a pot of cool water on the stove and then add the frog. Not sensing danger the frog will stay. Next, turn the burner on low to slowly heat the water. As the water warms, the frog relaxes. The warmth feels good. As the water gets hotter it acts like a steam bath draining away energy and deepening the frog's relaxation. The frog becomes sleepy and has less and less energy while the water is getting hotter and hotter. By the time the frog realizes its danger, the water is beginning to boil, and it is too late to take action. There is neither time nor energy left to do anything. The frog perished in the boiling water.
By the time I was finally able to accept the reality that "CF had slowly boiled me" I too was too exhausted and therefore unable to "jump out" although there was nowhere to jump to. CF left me with only two options. Fight for new lungs or accept the fact that I had fought CF for 28 years which was 20 years longer than most doctors thought I would. 

The first step was overcoming the denial...it may sound weird but I experienced the 5 steps of  grief/loss. Most people experience this when they loose a loved one, but I was experiencing it as I saw my own death approaching. I was grieving the loss of myself....

I found this information explaining the 5 steps of grief:
"All, keep in mind — all people grieve differently. Some people will wear their emotions on their sleeve and be outwardly emotional. Others will experience their grief more internally, and may not cry. You should try and not judge how a person experiences their grief, as each person will experience it differently.

1. Denial and Isolation

2. Anger

3. Bargaining

4. Depression

5. Acceptance

*You can read the full descriptions of each stage at http://psychcentral.com/lib/the-5-stages-of-loss-and-grief/

****So the answer is YES I went through all 5 stages...in the last 6 months of my "CF Life"****

1. Denial & Isolation: I was told I needed to wear O2 24/7 I hated it, I refused...I wore it just at night and tried to hide the marks the tubing left in my face. I felt admitting I needed it made me weak. When my lungs became so bad that I HAD to wear it out in public...I felt embarrassed and I felt I was a failure so I tried to avoid going out in public, but that was almost impossible. I found strength to face my peers and continue to live my life wearing the O2. 

2. ANGER: I am honestly not an angry person in general, but looking back did I feel angry? I did. I feLt I had lived my life being compliant & I believe that if I did everything the doctors said I would somehow beat CF, but when I realized that was a HUGE lie I disillusioned myself with, I felt angry at CF. I felt angry that I was helpless....I was angry that the doctors kept telling me that there was nothing they could do, that there was nothing any hospital would be willing to do because of the b.cepacia. That anger is what drove me to step 3.

3. Bargaining: I didn't bargain as much as I turned to GOD and asked him why? Sincerely asked him why...and I prayed so many nights to be healed. To take the pain and suffering from me. I cried alone and tried to understand why, despite all I had done, I was left to this fate. I grew really close to my savior at this time...I knew he was the one person who knew my pain, felt my desperation and understood why I was being asked to endure this. My tears were full of pain, fear, and sadness and I knew he hurt along with me. He was by my side and although all the promises in the world wasn't going to change how my CF played out, I knew he heard me and comforted me. 

4. DEPRESSION: I was happy on the outside, I smiled through the pain....in fact I felt obligated to be strong for everyone around me, but for the first time in my life I truly experienced then hopelessness that depression is. I started to see the inevitable and it was not a happy joyful experience...but being the optimist I truly am, depression didn't completely consume me & I surrounded myself with the love and support of my husband, family and friends. I started to feel like I didn't have much else to offer others and that I was more of a burden than anything. For me the depression was very personal and internalized. I would play Josh Groban's song "YOU ARE LOVED" over and over and over to remind me that I had a reason to keep fighting, to not give up. It was where I drew a lot of strength from...those simple words and the feeling that song gave me kept my spirit hopeful despite the overwhelming sadness...

5. Acceptance: I first found acceptance through prayer, priesthood blessings and personal revelation that I knew GOD had a plan for me, that either way I would have the strength to endure to the end and that if I was to be healed it would be HIS will. I accepted that being healed could mean being called back to heaven and be free from my broken, sick, weak and worn out mortal body. However, I feel I TRULY experience acceptance on Dec 7th 2007. I was in PITTSBURGH and my health was crashing...I was dying right there far from home but with Bryan by my side. I accepted that I could no longer carry my burden and I surrendered to GOD's will completely. I found peace. I was calm and I was not afraid. I was comforted and my fear was gone...it was a beautiful feeling of being separated from my mortal limitations. All my fears of leaving Bryan and his pain, and my families pain was not burdening me....I had peace that everything & everyone would be okay. I felt joy and happiness...I was prepared to accept whatever was next. 

That is when the doctors/surgeons held a meeting and decided to list me...I was put on a ventilator where I waited...for my miracle...3 days later I was in surgery getting the answer to so many prayers. 

That is what dying from CF felt like for me. I experienced denial that I was 'Not that sick', anger at CF and the lack of compassion the CF centers showed me, I grew closer to GOD through prayers asking to be healed, depression and disappointment in myself, then finally I found peace through acceptance that I had done all I could and I had the Faith to leave it in Gods hands...I did what I was told to and I knew my miracle was awaiting me. It was not easy and I don't wish it upon anyone, but I know when we endure to the end we are blessed. I was. 

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

Wednesday, July 22, 2015

Reality Check...

I feel it's easy to forget what my life was like before my transplant. It's easy to think that my healthy lungs are going strong and the thought of being sick, I mean really sick again feels so impossible. I mean I'm I've been so incredibly blessed with 7 almost 8 years with nearly flawless health...well flawless to my standard ;) I just have to stop for a few minutes a day and I see so many transplant patients facing all of our worse nightmares...rejection, pneumonia, CANCER..the list goes on.  It's then that I realize just how fragile my health really is. It's a young cf warrior today and maybe it's me tomorrow or next month or next year...but the reality is that it WILL be me one day. That reminder is important to keep me diligent and motivated to my routine and committed to the demands of life post double lung transplant. I don't feel like I live in fear everyday, but I do live in a very real sense of truth. I cannot lie to myself and deny what I KNOW will happen. It helps me live more, love more, accomplish more. However, I feel people in my life don't understand me. They see the healthy, happy, "normal" Jamie and they will never understand what I deal with emotionally everyday. 

I want to lock myself away where no one can get me sick or compromise my lungs...but I force myself past that instinct to self preserve so that I can live everyday like the blessing and gift it is. There's days when Anxiety would consume me if I allow myself to overthink everything. I have accomplished so many things with my donor lungs. Things that scared the HELL out of me & excited me at the same time. Again fear and anxiety are a side effect of the traumatic experience that IS organ transplantation & the meds that keep me alive. I smile and laugh when sometimes I just want to scream and run away and hide in a quiet safe place. The Internal struggle is hard to deal with. I'm not afraid to talk about my life post transplant and despite how physically healthy I appear...it comes at a cost. 

I know many beautiful strong CF warriors who's spouses leave when life becomes "too hard"...I am blessed with a wonderful, patient, loving husband who has endured this journey lovingly by my side for the last 17 1/2 years. He promised to love me and care for me when we met in 1998 and I have never doubted his commitment and unwavering devotion to my happiness. I am so blessed. 

I borrow strength from him more than he may even know. I feel like I have to pretend I'm stronger than I am but he knows me and he loves me when I'm strong and when I cannot be. So maybe I only have years or months but I have faith that God watches over me and has a plan...I believe I have a purpose and when my purpose on this earth is complete than I know I have a purpose in the next life and I will be ready for it. All my CF friends who suffer, fight and gain their angel wings also had a purpose and they were called to their new purpose in Heaven and now are watching down on us & helping from above. 

The hardest thing to say is "goodbye". . . But it's not "goodbye" it's "see you later".  

My life has taken me many places and put many beautiful people in my life and that is what life is all about. That is why I continue to fight, to try to inspire others and live each day finding happiness in little things.  Somedays are easier than others...But as long as I have Bryan I have all I need. 
The Moulin Rouge says it best: 

Thursday, June 25, 2015

Things on my mind....

Okay so I have my music playing and I can sink into my thoughts....

So many nights I lay awake and I have thoughts bombarding my head that sleep is far from being prioritized. In fact if it wasn't for my sleep aids I may never waste another second in deep slumber, but only in deep thought. I think about things simple like 'what do I have to do tomorrow'...to deep compelling thoughts like 'what will be the expiration date of my donor lungs, how terrified will I be enduring rejection, watching Bryan face the reality of the possibility of losing me again, the suffering'...i fear losing the wonderful life I've been loving the last 7+ years. It's overwhelming and it's inevitable to have these thoughts. It's the hard truth of the decision I made 7+ years ago when I got my double lung transplant. I feel like my life has been a dream/a fairy tale in fact and I fear the day it comes to an end. I just never in my life imagined I would ever have a life like I have and it's a beautiful gift...one of the most treasured gifts I've ever received. 

I listen to myself breathe in the quiet darkness at night and the sound of the air moving through my donor's lungs is a lullaby reminding me that she lives through me and that I live becaue of her. A soft and steady sound that bonds us together through life and death, I have a rare opportunity to share a part of someone who I will never meet on earth...it's a strange relationship that although it may seem one sided, I feel her and I know she watches over me...I mean us. Organs are just a physical body part that serves a purpose...but it's so extremely more complicated than that.  There aren't words to describe how deep these thoughts run through my soul to allow anyone to understand...it's personal to me and me alone. 

I have recently lost a very close CF Cyster...it was painful to know she was no longer on earth and would be so missed...my heart broke for her faithful and wonderful husband who was by her side till the end. My heart broke...but not just for him, but for the thoughts I could not push out of my mind of my husband facing the same loss, heartbreak, and loneliness. I love him so much the thought of his pains hurts so deep I cannot bring myself to believe it real. But it became very real when I said goodbye to my beautiful friend. Her husband has found comfort, love and happiness with another woman and I'm happy for him, but again my thoughts are wandering to my one true love...will he find new love, if not how long will he be alone and will he ever be the same person. I do find joy in the thought that if he does find new love perhaps she can make him the father I always wish I could have but I was never able to. 

There's a lot of guilt of feeling like I cheated him from having a family like his siblings all have experienced. It has alienated us some from family & friends. We are misunderstood and unintentionally left out due to being "childless" when others our age have kids as young as infants to highschoolers. We are not selfishly choosing to not have kids...but we can't because I am broken in many ways. But Bryans loves me broken and pieced back together again with spare parts, scars inside and out and the knowledge that our fairy tale life is no real fairy tail....it's been hard and it continues to be hard. We just have to be happy that we have pages still left to write our story in. 

My thoughts often wonder to my childhood dreams and aspirations of becoming an actress...I remember feeling like I could do anything even become an award winning, inspirational famous actress. Such BIG dreams for a tiny young girl. I was confident nothing could stop me from doing anything I put my mind to...I'm glad I have that younger version of me still hiding inside me and pushes me to pursue other dreams and take on things I try to convince myself are impossible. 

I wish I did more for others...every day I could do more. I'm selfish & I'm not afraid to admit it. I pray that someday I can live up to become the person I hope to become. 

I am a good person...I try hard to be that. I love God and strive to live my life pleasing unto him...I believe I chose my life and my trials knowing the person they would help me become...that is how I can look at all my trials, tribulations, pain, suffering and Be grateful. I don't wish it away because then I would have missed out on the beautiful, happy, touching, spiritual, amazing experiences and people I have had throughout my life story. 

This is just a glimpse into my thoughts...there's so much more...so very much more! 

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