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

Tuesday, December 29, 2009

Dealing with life after transplant

I don't know if I have posted too much on this subject, maybe a few times. I really like to focus on how much better my life is now that I have new lungs. Believe me I wouldn't change it for the world. But to be a little more "real" or I guess to put it, lets face the reasons Cystic Fibrosis needs to be cured, not just bandaged up.

A lung transplant for ALL CFer's is something they will have to face. I am not being un-optimimistic, but that's seriously the 100% truth! It is the closest thing we have for getting any improvement once all the meds, and exercise and supplements and all things tried, fail. WHY? because believe it or not, your lungs are DISEASED! I didn't realize that fact until I saw what they looked like after they were taken out of my body. It is shocking! They will have an experation date, sometime! So if you want to know some facts about your ONLY option at this point, then read on.

Transplant is not a cure. That being said, it is a good trade. CF at the point where you are considering or evaluated a transplant is pretty much sucking every bit of energy, happiness, hopes, dreams, and future you may have. Believe me I felt all those things. I was in denial and isolated myself so I wouldn't have to face the world as "the sick girl", then I got angry "I did everything to stay healthy and it's not fair", then I pleaded and begged to get better, then I cried and became depressed. I lost the ability to do a lot of things I loved, I felt no one understood what I was going through. Then I finally accepted the fact that I was going to die soon, I needed to be strong and a transplant was the only other option. Option A: was to just give up and die. . .while Option B: was to at least go down fighting, take a risk and try to help myself.

Here is the trade offs: Lots of pre-testing, going on a waiting list, waiting, waiting, becoming more sick and weak while waiting. Getting a match, excitement & fear. . . . Surgery~ Hardest thing you'll do. Recovery~ Harder than surgery~

There may be complications and set backs. Recovery varies from patient to patient. Now you have healthy lungs that need to regain their full strength which will come in time. PILLS. . .we are used to pills, vitamins, nebulizers etc, So you pretty much just trade off CF drugs for Anti-Rejection drugs, prednisone, antibiotics, lots of regular blood work, and what side effects your new drugs will have. Also you will have regular check-ups (clinic) along with bronchoscopies to check for rejection or infection. Your care post transplant is a more strict regiment than with CF. . . .you must be fully committed or you'll loose what you worked so hard to get. You will regularly test your blood sugars, PFT's (at home) and at clinic. Along with your temperature and ANY signs of infection or rejection. But Believe me it all fits into your day and it takes WAY less time than what you do with CF lungs. Here is the biggest trade off. You always have the chance of rejection (which can be treated especially if caught early) but you get 80% FEV1 or better, you can run, dance, laugh, enjoy your family and even possibly have a family of your own. Your dreams and aspirations in life become realistic again. Anything is possible, it's your 2nd chance to do whatever you wanted that CF held you back from.

If you treat your post transplant care responsibly and seriously, then you can expect 5+ years from you new lungs. I have met many that are 10+ or even 15+ years out. Advancements in transplantation of Organs is also moving forward and breaking records.

So I hope you see, that Cystic Fibrosis ideally needs a solid cure!! But until that is a reality, transplants are all we have. They are a last resort. Live your life with "YOUR" lungs for as long as you can, when they become too diseased to be of any use, seriously consider Option B vs Option A. . . . .

Thanks!

Save a life * Be Someone's Hero * Be an Organ Donor

5 comments:

bo said...

It's almost impossible for me to imagine that CF will ever be cured. It's a genetic mutation. Short of gene therapy, there isn't much that can be done.

But curing some of the things that CF causes should be possible. Will we see those things in our lifetime? I don't know, but I hope so. The transplant route, as you've said, isn't a cure. It's a trade, at best. And I worry about how good of a trade it is. I hope for those 10+ or 15+ years with Ashley, but nothing is promised.

Anonymous said...

Jamie, this is an awesome post. I am currently listed and waiting and it is so great to read such uplifting posts. Do you mind if I give your link to an online CF group?
Take care,
Jerry
jfnym@earthlink.net

fahrjr said...

Great post!....I have my three day evaluation in the first week of Feb.

Hanging out with the Riley's said...

You are such a great inspiration for those how are looking for more then option A. I have to say I am so glad that you swallowed hard and took that leap of faith. I am not sure I would do very good with out you in my life. Love you sis!

Nancy said...

I wanted to wish you and Bryan a very Happy New Year! I can't wait to see what you will accomplish in 2010!

All my love!

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