Life Blog

The List….

When I was eight months pregnant Scott was transferred over to the transplant team for an evaluation for a double lung transplant. They told us his continuous infections were telling them that he would need to be put on the list soon. They told us to “get ready” for this next phase in our lives. As you can imagine at eight months pregnant I was beside myself —- this could not be my life right now. I thought our new “phase” of life was going to be filled with dirty diapers, sleepless nights, and utter joy, not transplant. How was I supposed to have an infant and tend to Scott after transplant?! This was an impossible thought for me, but I put on a strong front and went with it. I knew God would only give me what I could handle, and if this was his plan I would take it with stride. I gave it up to him. I surrendered. His will not mine. Really that’s all I could do, if not I would have been a ball of mess and that was not something this CF wife soon-to-be Mama could do. I signed up for this life, so on went my big girl pants and I pressed on and leaned into my ultimate provider, who graciously extended our “getting ready” phase for two years.

Fast forward to today and Scott has continued fighting the fight. He continues to be fearless in his battle against Cystic Fibrosis and has resolved to live life to the fullest; he still works, we recently traveled to Hawaii, and he try’s to keep up with his very energetic almost two year old. Over Christmas we were once again told to “get ready”. This time though is different. This time it’s for real. This time it’s going to happen. I am still having a hard time processing this fact. I’m having difficulties realizing this is my reality. Again I fight the negatives in my head. Am I strong enough for this? How will I manage? What will happen if the lungs never come? How will I survive if my worst fears become true? Again, I lean into God. It is through him I find my strength. I know I can do this. The unknown is terrifying, but I’m going to once again put it in His hands. If I live in fear and negativity I will no longer have the ability to find the joy in my life, which I have in abundance. I want to enjoy this time I have with Scott and Seeley and continue to live in the moment, so goodbye fear.

Fear, you don’t own me
There ain’t no room in this story
And I ain’t got time for you
Telling me what I’m not
Like you know me well guess what?
I know who I am
I know I’m strong
And I am free
Got my own identity
So fear, you will never be welcome here

-Francesca Battistelli “The Breakup Song”

Scott will be put on the list officially this coming week. His lung functioning when sick this past week hit an all time low of 22%. In addition his heart is not working as well as it should and they are showing that one of the valves is thinning. This means that if he continues at this pace he made need a heart and lung transplant, which is not something the doctors or us want. So we are being cautious and deciding that he needs to go on the list now rather than waiting. Being on the list and getting a double lung transplant is NOT a cure. We will be trading out some pills for new pills, as now we will be fighting rejection in the lungs rather than CF. The CF will still be in all other areas of his body, he will still have diabetes, he will still have osteoporosis, he will still have sinus problems, he will still have digestive issues, he will still have Cystic Fibrosis. Again this transplant is not a cure, just a bandaid. A postponement of death. Most double lung transplant recipients make it through the first year. 50% make it to five years. These are not the best odds, but it is better than the alternative. We pray that he will beat the odds. When we get the call, which could be tomorrow, next month, or next year we will have to drop everything and put all our efforts into his recovery. He will be in the hospital after surgery for 10-14 days and then he can go “home” (home has to be within 45 mins of the hospital, which ours is not). This means we will have to relocate for three months to the Stanford area for the rehabilitation process. It’s going to be intense, but I know Scott, he is going to breeze through it. Me on the other hand….

This will be the hardest thing I have ever done. This will take every ounce of strength I have. This will NOT break me. I am stronger than this.

Breathing in my “next phase” of life,

Ashley 💕

P.S Sign up to be a donor!!!!!!

https://donatelifecalifornia.org/education/how-donation-works/the-organ-transplant-waiting-list/

5 thoughts on “The List….”

  1. Ashley, so sorry to hear that Scott has been sick enough to be put on the transplant list. I don’t know what we can do to help from here, but since we’re not moving, we have a spare room if you need it. Let us know when Scott is in the hospital and we’ll go visit him. We’ll walk this path with you and I’m sure we have lots of company who will be there for you. Hang in there.

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    1. Thanks Margaret! We appreciate the offer — that is very kind of you! He just went back in again tonight and has surgery on Friday. I will let you know if he stays in longer so you can go see him, I know he loves getting visitors.

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  2. Hi Ashley,
    Thanks for your updates. I also didn’t know Scott’s health was again so precarious but officially being on the transplant list may be a blessing in disguise. As Margo said, I have a spare room too, so you, Seeley, and Scott are more than welcome to stay for for as long as you need. If Scott is hospitalized again, do let us know as Joe, Margo and I would love to visit.
    Praying for you all,
    Nancy

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