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A Very Hard Decision

I fought with myself for a week about whether or not I wanted to write this post. I thought things would improve or the news would change, but it only seems as if things are getting worse. I've tried focusing on work to take my mind off of it, but it's now starting to affect my work, so it's left me with hard decisions to make and I think I've made it.



The official rejection letter that came in the mail yesterday.


Not everyone is friends with me on Facebook, so I'm sure you missed it when I announced that I found out that I'm not a candidate for a kidney transplant. After being on dialysis since I was 22 (I'll be 31 on March 9th), getting a transplant was always the end goal. Everyone told me that I'm "so young" and that I "shouldn't have a problem" with qualifying for transplant, but we didn't account for all the things that would happen from the time I started to the point we are now. I had open heart surgery in 2018 to replace my mitral valve with a mechanical valve, which requires me to take Coumadin for the rest of my life. A year after surgery, I ended up with my first round of calciphylaxis (which I'm also still dealing with a second time around). I had to have my parathyroid removed to prevent this from happening again, only for it to come back even worse 8 months later. You guys already know that story, so I won't reiterate it all over again.


So now we're at the present day issue right now, which is me not qualifying for transplant because of this. My medical team believes that the Coumadin I'm on is what's actually causing my issue. Because of that, the transplant hospital that I was previously in work up with has completely rejected me. No other transplant hospital will take on my case and won't even let me start the work up process because of this ongoing issue. Next week, I have a biopsy scheduled so that my kidney and heart doctor can officially know whether my issue is actually calciphylaxis or tissue necrosis caused by Coumadin toxicity. If it's calciphylaxis, nothing really changes and I can't get a transplant. If it's Coumadin toxicity, I have to have another open heart surgery in order to replace the heart valve I have so that I can get off of Coumadin. I'm sure you can see how stressful and devastating this entire situation is, which has affected me mentally and emotionally to the point to where I can't even bring myself to write during this time.


So for now, all projects are postponed indefinitely.


I don't know when or if these books will be written. Right now, I can't even focus on that because I have way more important things to think about. The stress that comes with being an author isn't something I want to deal with while I'm dealing with heavy real life things that literally affect my qualify of life. I won't be as active on social media and won't be publishing right now. It was a hard decision to put writing off to the side because I didn't want to upset people, but at this point, my life and the very real things going on within it is a lot more important than people being upset over a book or series being written. Maybe World of Bennett will be written when I feel like and maybe it won't be, but it's not a priority in my life right now.


Hopefully you guys can understand. That's all for now.


-Ember

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