Wednesday, October 11, 2017

One year since transplant referral

A year ago in October Elias was referred for transplant. I remember that part of that brought us peace and clarity because we had been talking about transplant and if it was time, but we didn't know what his doctor was thinking. It was good to be on the same page and have a plan, but it also signified something else. It was the moment where our focus changed from him getting better, to knowing that he wasn't going to get better. From that day forward the focus became on keeping him as healthy as possible for as long as possible and to get him listed for transplant as he would continue to deteriorate, coming closer to death than I could have ever imagined.

Tears stream down my face as I write this and remember. We had no clue what the next several months would look like. I am still astounded by how quickly things moved and his disease progressed  after that.

One of his clinic nurses told us that normally, testing took about 6 months for one to be approved for transplant, thankfully his transplant clinic did a lot of that testing on site during his three day evaluation. We all knew he may not have 6 more months.

The following month he was evaluated and then his health took a sharp decline in December. He said his goodbyes, I felt so cruel keeping him alive. Telling him to wait just two more weeks until his insurance changed. Two weeks felt like a lifetime for both of us and I wasn't sure he was going to make it. I will never forget the day he told me that he was ready to die, that he couldn't do it anymore.

But he did make it and his new lungs came in the nick of time.

I would have never imagined a year ago that I would now be sitting here, and he would already be 9 months post transplant. I would never have imagined that he would have gotten sick so quickly. Looking back those months felt like an eternity with my daily fight with the insurance company to get him coverage that would allow for him to be listed. Yet at the same time, they passed all too quickly because I knew he needed more time. Losing two week to communication breakdowns at his transplant clinic felt devastating.

I often say, and you have likely read it before, that life is not what I imagined it would be post transplant, but it is far better than it was last year and for that I am eternally grateful to his donor, her family and to God for his lungs that came just in time.

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