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

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. 

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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