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I was feeling down and out a couple of weeks ago and just truly heart broken all over again and so I sat down and wrote. I was so happy for a friend of mine who just got a double lung and liver transplant, yet I was feeling really sad that my husband didn't get the chance. This is what resulted... I know that I can add so much to it... but I thought I post it as a blog just to record it and be able to look back on it for the book that I want to write.
My husband died waiting to get a little bit healthier to go through a lung transplant evaluation. Because of a collapsed lung, multiple sepsis infections, organ failure, and CF taking over his body.... he needed a double lung transplant to survive. Whether we wanted to realize it or not, for 3 months his body was slowly shutting down. It wasn't until the last 2 weeks that I finally was able start accepting as best as humanly possible that I wouldn't walk out of that hospital with my husband ever, ever again. For three months his body was working against him in every way possible. He couldn't breathe on his own. His lungs could not properly process oxygen and CO2 like they were supposed to. His liver refused to filter out medications. His kidneys continued to flare and hold onto any fluid. His already compromised pancreas didn't want to work at all. His digestive system refused to absorb any kind of nutrients and calories that were essential for him to survive. Cystic Fibrosis has settled into every organ in his body and this time it wouldn't back down.
I put as much time and energy as I could into calling multiple transplant centers around the country, desperate for one of them to say, "Sure, we can take a look at his case." despite the fact that he had a trach, was on a ventilator, was extremely sick, and would have to travel to a different state somewhat unstable just to be evaluated. I talked to the financial team, transplant coordinators, social workers, other transplant families, ANYONE I could to get some information on how I could save my husbands life and make the hope of a life saving transplant a reality. I spent countless hours dreaming up fundraisers to help us raise hundreds of thousands of dollars for expenses that were quickly building. I spent so much time researching medical air transport companies who would be willing to fly a high risk patient across the country. And then my next obstacle was trying to find one of the VERY few teams that were actually affordable to take him thousands of miles away. My full time job was trying to save Spencer's life in any, and every way possible.
I finally got a promising lead with Duke. Knowing that they were one of the best centers for complicated lung transplantation cases, I was very excited. But I also knew that they were one of the most strict. I felt that if they denied him, which was a very, very likely possibility, we would have no where else to turn. I truly felt like that was our only hope. They told me that I could fax the papers over to their center so the transplant team could look it over. They couldn't guarantee, of course, that they would even want to evaluate him.... but them just saying that they would look as his case was the furthest I'd been able to get and those words were words I was holding on to. Putting so much hope into.
Unfortunately, in the end we came up short. A lung infection, ventilator caused, that crept up right before Thanksgiving proved to be too much for Spencer's body to handle. It threw his organs into a fit and decided it wasn't going to back down. Cultures of his sputum showed growth that we'd never seen before. Multiple bugs settling in his lungs. IV and inhaled antibiotics weren't helping him anymore. They were only making the progression of the infections and disease slow down. It was at that point that we had the most painful discussion of my entire life. The discussion to stop treatment, slow down and stop the feeds, and eventually take him off of life support.
Spencer firstly approached me about this subject. When I was feeling optimistic about transplant, after we had raised over 10,000 at our very first fundraiser, after I was finally making progress with COTA and his CF team with the paperwork. I actually saw a glimmer of hope that well hey, this could really happen. But then just as I got my hopes up a tad bit too high, I went to the hospital and Spencer very honestly said that the doctors talked to him about the course of the disease. The course of treatment. What could and could not be done. That there was just nothing else that they could do for him.
I, of course, was very angry. I couldn't believe that they had told him that. And told him without me there. It was a doctor that we weren't in close contact with, and one who was very to-the-point about his care; I'd always liked that about her, but at the same time, i'd always hated it at the same time. I asked Spencer how he could agree with her when she didn't even understand what was going on. I asked him why she would say that and why the other doctors never mentioned anything like this to us. I asked why it was so sudden? I wondered why she was saying this when all the other doctors gave us hope and here she was, crushing it. He matter-of-factly told me that he could feel his body shutting down. That he just knew she was right. That he had known for awhile this is what was going to happen. Honestly? Deep down and in hindsight I knew it too, but there was no way that I was going to give in at that moment. There still had to be something that could be done. I still had hope. I still had so much drive, fight, and determination to save Spencer's life.
At that moment Spencer was the strongest man I'd ever known. There he was, laying in a hospital bed hooked up to countless IVs, catheters, tubes, lines, and life support, feeling absolutely horrible. He lay there talking to the love of his life, his wife, about his own mortality. Trying to console her and explain why he knew they were right. Trying to calm her down out of her fit of fury, disappointment, and heartbreaking pain. It was a reality that he had accepted multiple times in his life. A reality that his life was going to come to an end within the next few weeks whether we wanted it to or not. He was being strong about it. Not shedding a tear. Not a doubt in his mind that they were right. It was something I just wasn't willing to listen to. I was not at all willing to accept this fact after I had put so much blood, sweat, and tears into getting something to work out.
I couldn't help but wonder if that was all it took for him to just give up. I knew he was struggling with severe depression and was having a hard time pushing forward. I wondered if that one doctor telling him there was nothing more than could be done, he took that as his que to stop fighting. To not look into any extreme measures. To no longer consider lung transplantation. This made me extremely angry. For awhile I thought that it was going to be completely her fault because he was going to go into an even further depression, begin, yet again, to refuse doing his treatments and PT when I was JUST able to talk him into complying and pushing forward. When I thought I had JUST knocked a little bit of hope into his shattered heart. I couldn't wrap my brain around why she would talk to HIM about this and not ME. Why she couldn't let ME wrap my head around it first and then figure out how to approach Spencer about it. I was just furious because I was partially in denial that this was it.
And this is where I got.....