Friday, August 20, 2010

What is and What is Yet to Be

I have been trying to decide the best way for me to write this post for several days now. The truth is there is no easy way to tell any of you this. I figured by now I would be pouring myself into this blog, documenting every single emotion, telling all how I feel, but honestly, I am not sure how I feel just yet. So I am going to write this the best I can. As a writer I wish there were some great imaginative words for this part. But there isn't. You are my audience. You guys have been so loyal to me.  So I am going to be honest with you. Sometimes honesty isn't pretty. Sometimes it is raw, real and ugly. That is how today's post is going to be. I can't stress about my sentence structure this time. My mind is too chaotic to even try to make it something great. Who knows? Maybe it will be great simply because it is real. Regardless, here is my update.

On the evening of Tuesday, August  10th, 2010 roughly around 7 pm I had a visit from my doctor who delivered news that will forever change my life. I am nearing the end stages of my disease. What does that mean exactly??? For me it means, Cystic Fibrosis has taken up residency inside my natural born lungs and despite my best efforts refuses to improve nor leave.

I have lived for about the past five years with my numbers in a critical state, with the fear of this new news lingering over my head. I have managed through a lot of blood, sweat and tears to maintain my disease, stabilize it, and keep my numbers hovering just well enough to dodge my new reality.

I do not feel defeated nor ashamed of my fight. I know I have put forth 200% of what has been asked of me. I have lived well and I have lived happy. However in the past six months my health has taken a horrible decline. CF has proven once again the monster it truly is. I am going to soon be faced with decisions that literally make me shake uncontrollably all over just to even think about them. However, I know GOD'S TIMING IS PERFECT!!!! His plan for me is WITHOUT flaws!

Not only have my numbers declined to around 25% now, but my quality of life is no longer what it once was. It terrifies me to see how quickly CF can step in and destroy everything in its path. In these short six months, I have went from working out at the gym two hours a day, running daily errands and simply just living to barely being able to walk from my bed to my kitchen, depending on oxygen certain times through out the day and planning my daily activities around how much energy I may or may not have. Some days I find myself in denial of it all. I have good days when I require no oxygen, and am able to do daily activities. However then I walk up a flight of stairs and it knocks me flat on my back and my reality sets in. My mind begins racing and I wonder how did I get here? This was not supposed to happen to me. I was going to be different. I was going to beat this thing.

The great news is I still can. The fight is not over, yet it has only just began for me. I have a chance to take back everything Cystic Fibrosis has ever robbed from me. I can have a double lung transplant.

While a transplant is trading one set of problems for another, it will enable me to become the person I have always wanted to be. I will be able to run, climb stairs and even climb mountains if I want to! With nothing slowing me down!! This will be my second chance at a life I have never truly had a chance to live!!

My team feel as if I am ready for the evaluation. For five years now I have been holding them off, however my body is telling me now is the time. I may not be listed right away because they still believe I may be a bit premature with my health. They feel I still have some time with my natural lungs yet. However results of a heart test in the hospital revealed I now have mild Pulmonary Hypertension. What is happening is the pressure is building up in my heart because my lungs are working so hard to breathe. This explains my shortness of breath and need for the O2. The doctor is not concerned but feels this is a sure sign of progression of my disease.

Their main concern right now is if I were to get sick (suddenly) this upcoming winter (as in flu, etc.) and need new lungs right away. If I have not been evaluated then I can not be listed, so for extra precautionary reasons we are going ahead with the evaluation. However, my doctor did mention if for some reason I had the evaluation done and we realize I am much sicker than what we originally thought then I could be listed right away. So there is a lot of unknowns until I go to meet the transplant team. He did say that he imagines, sick this winter or not, I would be listed within the next 6 months to a year, possibly two years, depending on if my health stables off where it is now, or continues to decline.

My first step is to meet with my transplant team. That will happen this month. Then my actual evaluation will be done in September. It will consist of roughly four days that I will have to stay in a hotel in Birmingham and will have numerous tests ran each day. In short, I am not looking forward to it! I hate nothing more than being touched, poked and prodded on. You would think after all these years, it would be a walk in the park for me, but no. I don't like it now just as much as I didn't like it 15 years ago. I have never become use to being sick. It has always felt foreign to me.

Oh and side note for all my nurse friends who may be reading this I would like to add::::You know
those beautiful veins I have across my wrist, the ones I fight you guys for every time you do blood work. The ones I always insist I am saving for a rainy day??? Well guess what!?! I looked outside and it's pouring! This is just the situation I have been hoarding them for! So I am praying the lab work, because I know there is a ton of it that has to be taken during evaluation, will go a bit smoother since they will be able to use my really good veins. So I guess being stubborn will pay off somewhat. =)

So now what??? I am not really sure. I am new at this. I am still comprehending it all. I have some days
where I have peace about it, while others I cry for no reason at all, and at the oddest times. I can tell you this, my daughter has never looked as beautiful as she does now, my husband has never smelled as sweet and food has never tasted as good! I tell everyone I love them to the point I know they think I am crazy. Not because I think I am dying, but rather because I know we should say it more often, simply smother ourselves with the ones we love, for all we have in this life is each other.

The most important variable in all of this is GOD. He has His hand all over this. I know when He created my donor's lungs He knew one day they would find a home inside my chest, so He made them perfect, not only for the life they would live with my donor, but also for the life they would GIVE to me!

A lot of things I still can't wrap my mind around. Like what it will feel like carrying a pager, waiting for it to go off to let me know my new lungs are ready. Or my donor, who I am already deeply saddened to know the life they will lose so I can gain mine. Or how about the mind blowing fact that I will lay on an operating table while my disease is pulled from my body once and for all and replaced with the sweet miracle of life. I have been blessed to only have CF destroy my lungs. I have never had the additional problems other CF patients have. Recently a finding of my genotypes gave us a better understanding as to why I was born with it only in my lungs. So for me I will no longer have Cystic Fibrosis. That sentence is powerful.

It is all so overwhelming and I know there will be good days and bad days. My doctor has warned me that I will be much sicker than even this when my new lungs come. I simply can't imagine declining any further, but I suppose that is the way it happens. I do have dark times ahead of me but I am clinging to my Savior and I trust He will lead me into victory and glory for His name.

Everyone keeps asking what can they do for me now?? You may find yourself even as you read this asking yourself the same question. The truth is as far as this disease goes, this walk is between God and I. No one can take this from me, no one can make it better, no one can roll into the operating room for me. I have to do it. God will be and is with me. That I am certain of. So I will not be alone. What you CAN do are two things:::::: First, PRAY PRAY PRAY!!!!! Pray over me, pray over my family, pray over my doctors, pray over my donor and pray over my donor's family as well. I believe in prayer.

The second one is simple, just love me. Love me and let me love you. There is no medicine that can heal like love and right now I need not only to receive it but to give it as well.

As of now, I believe today is good, and tomorrow will be better. The battle will rage on and once again I will drop to my knees in deepest appreciation to my God that I am still here, breathing and living, one day at a time. That I too, get another day, another hour, another moment, another breath........

and simply........another chance.

Peace and Love, always Peace and Love.
I love each and every one of you forever.

"Even when life is bad, I can't complain because even then......I am still breathing."
-Summer Welch

Photography by Rtistic Images


  1. Summer you are one strong and amazing person! I will not stop praying for you, your family, your donor and your donors family! God is in control and I know that he will take care of everything!

    Christy (Goodwin) Daniel

  2. You are in My Heart!

  3. Praying for you girl, I know you're going through a lot and am proud of you for the steps you're taking. Thanks for sending me this link to keep up with you. A couple "scripts" for you... psalm 91, 2 Samuel 22...

  4. I will always have you and your family in my prayers...I cannot tell you how much I admire you strength. I LOVE YOU! :)