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

Wednesday, September 29, 2010

What did I have to lose?

Yep, I am drawing a blank. I actually know I repeat myself a lot. I sorta feel like I have an automatic 'reset' button. Yep, I am drawing a blank. I actually know I repeat myself. . .wait a minute! It's not quite that bad. But it does happen. So if I repeat post or post subjects I probably wont remember doing it.

Is there really a CHOICE? The way I saw it was if I don't get a transplant, then I had a 100% chance of dying from CF and soon, or get a transplant and see what that life offered me. It obviously had more to offer me than the life VERY END STAGE CF offered me. What did I have to lose? A big fear for me was having to say goodbye to my family before the surgery not knowing if I would ever see them again. . .but once again by NOT choosing to be transplanted that was going to 100% happen!. The more I thought about it, the more I didnt't want to leave my family with any "what if's" and/or "regrets". I wanted to make sure I tried everything possible so if I did pass away, myself and my family would have closure. (That was the choice that was right for me. . .a transplant is a VERY personal journey and decision.)

I was scared about dying on the operating table but the hospital I was transplanted at eased my mind by telling me they hadn't lost a patient on the table in over 14 years. . .what a relief! Although I have heard some people say that transplants aren't perfected, & that is why they would not get one. . .my argument is neither is child birth, but thousands of children are born successfully into this world every day! In a perfect world Organ Transplants might be 'perfected' and flawless with no risks of rejection. However, in a perfected world. . .CF would be cured! Until then, organ transplants save lives and improve quality of life for most if not ALL patients.

I have blogged about the "HARD" part of life after transplant. It's not always rainbows and butterflies, especially when I woke up after surgery!!! I can't even begin to describe the pain, discomfort, disorientation, discouragement, depression, JOY, fear, and set backs. It was a LONG, Difficult process for me. It's different from patient to patient. .but from the other transplant patients I have gotten to know since my surgery, I have noticed almost all of them have something that was/is a hurdle in their recovery too. BUT once the body works out all the kinks of adjusting to all trauma and new meds, life gets good. . . really good!

MEDS, blood work, clinic appointments, chest x-rays, PFT's, bronchoscopies, inhaled or IV antibiotics and physical therapy (exercise). Those are the things I deal with post transplant. . . .any or ALL of them sound familiar to a Cystic? YEP, so nothing we can't handle right? Also most of that stuff is frequent  only the first few months or year post transplant! (Each center does it a little differently)

MY ROUTINE:
9:25am: I take my handful of meds. including anti-rejection (takes two seconds)
Lunch: I take my vitamins (takes two seconds)
9:25pm: I take my second dose of anti-rejection (takes two seconds)
Daily: Stay active/exercise, watch my diet, take my medications
Weekly: (monitor for early signs of rejection) Track my lung function with hand held micro-spirometer & Track my temperature,
Monthly/Annually: Clinic appointments which sometimes includes PFT's , X-rays, and/or Bronchs

Honestly, post transplant care is easy compared to the daily routing we have caring for CF lungs. Don't get me wrong, life post transplant can be stressful and it's not "perfect". . .but I would do it all over again because all the pro's outweigh the cons 10 fold!

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3 comments:

James Fahr said...
This comment has been removed by the author.
Denise Fahr said...

Ohhhh, reading this just makes me smile!!! I know I've said this to you before Jamie, but you have been such a tremendous help in getting me through Jim's transplant journey. Things are amazing post-transplant once the hurdles are overcome. I should mention for others I am a spouse of a post transplant CF'er. :)
Here's my husbands blog if anyone is interested: fahrjr.blogspot.com
xoxo,
Denise

bo said...

Time I spend worrying that bathroom mildew, the occasional spot of mold, dust, cat hair, unswept floors, standing piles of water, the bodily leavings of the cats and any cold or infection I get may send Ashley into chronic rejection: all of it.

I realize I may have a problem, though. :-)

But Ashley's like you: she does worry terribly much about it. And I'm happy that both of you can relax (somewhat) about your health. You both deserve it.

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