I’m in the process of trying to get on a kidney transplant list. I have been going through a wide range of tests including ultrasounds, echos, EKG’s, stress tests, and more. Lots of blood draws. They have to check my levels and compare my blood to potential living donors. This is a good thing. It means people have stepped up to be tested on my behalf. How big is that? I know of a few people that mentioned getting tested and one that I talked to at length. It’s funny because due to medical privacy, I’m not permitted to know who is being tested or what phase they are in. People can tell me themselves, but otherwise I will never know. I could go through the entire transplant surgery and never know the identity of my donor, if they chose not to tell me. That would be an odd experience I think.
Many people have asked how they can help short of giving one of their kidneys. We consolidated those ways to help onto my Patreon page. Feel free to check out there to see where you might be able to pitch support our way for this journey.
I’m going in again next week, as of the time I am writing this post, for meetings with the surgeon and a number of other doctors. There are a few more tests. There are a few shots and boosters I’m having to get to be sure I don’t catch anything nasty if and when I am in the midst of the transplant process and on the immunosuppresive drugs. That would be a very bad time to get sick.
At some point soon, my case will go before committee and they will decide whether to recommend me as a transplant candidate for the list. I’ve worked hard to stay relatively fit in terms of endurance and general health to up my chances, but nothing is ever a sure thing.
At the point that a transplant occurs, I’ll need to be up in Charlotte, North Carolina near the transplant center for about a month of recovery. I’ll have to have caregivers there with me too. There will have to be people in place to help with my children while I am not able and others are helping with me. This is a moment in life where I am having to learn that there is no muscling through it all by myself. I’m a guy that quit my job to write about zombies. I’m used to taking the leap and waiting to sprout wings all by myself as I’m falling. Can’t really be that guy in this moment. I’m still taking huge leaps – maybe the biggest of my life – but I’m not going to be able to fly alone.
I have learned to be deeply thankful and open to my support system. Family, friends, and readers have stepped up for me in a huge way. I have people that have offered financial help, emotional support, volunteered to step in on tasks I could not handle alone, and have stepped into the gap when I fell short due to my own, growing limitations.
I used to write ten and twelve thousand words a day regularly most days of the week. I was able to translate this into steady income through my own writing and ghostwriting for others. I’m still writing and doing these things, but I can’t produce those same word counts anymore. I have to be more deliberate about my time and energy.
My wife Jenny has been a rock for me. She has put in the leg work to find out what we needed to do and how we needed to do it. I would not be here in the process without her. No chance. She has had to spend more time helping with me and making adjustments with her work schedule as a result. As many of you know, her mother is in need of full-time care, so she helps her father with that as well.
I’ve been tired for a while. Fatigue is a part of kidney failure. The amount of tired I feel now makes me miss the kind of “bad” I felt before. Pain is a normal part of my life and day as many of my friends deal with too due to conditions in their own lives. I’m having trouble with the nerves in my fingers and my hearing. People tease me in good fun about shaving my beard. My skin was itching so bad that I couldn’t keep it any longer. So much of the function of our body is connected to the kidneys. You begin to realize it when all that stuff stops working properly. I’m down to 20% kidney function and dropping. My father, grandmother, and brother all went on dialysis due to the same polycystic kidney disease I have and they eventually died while on it. My goal is to get a new kidney and avoid dialysis as long as possible. Hopefully, I can avoid it all together. It’s getting close though.
My kidneys are big from the cysts. They are over twice as big as normal which is part of my pain issue. One thing I will be talking to the surgeon about is if there is even room to put a new kidney in. If not, they will have to cut my old ones out. That would be another surgery first before we could even look at transplant. There would be a minimum of six weeks recovery. I would definitely be on dialysis then. Obviously, this is not ideal.
Keep me in your thoughts and prayers and fire ceremonies and general acts of mojo as we find out the details of these tests and what this means for my future.
I’ve tried to be pretty open about what I am going through. Part of that is just an online transparency that I’ve chosen to make a part of my presence as an author. Part of it is that I really do benefit from the support I get from my extended community and extended family of relatives, friends, and readers. You have been a big part of me moving forward through this. People have expressed drawing inspiration from my drive to succeed at this journey and to face these challenges. Others drawing strength from my story gives me more strength and inspiration too, especially through my harder days.
I’ve debated how to separate out my personal journey for a kidney from my journey as an author as I promote my writing. I’ve come to the conclusion that it is not really possible. The parts of my life are too deeply intertwined to successfully unravel them without unraveling the heart of the story. I decided instead to find a way to successfully marry the two so that I can stay connected to all the people in my life that have been such an important part of my support.
I’m using my Patreon page to do that. Patreon allows artists of all types to connect directly to patrons and supporters of their art. The pages provide original material to those that wish to put monthly support behind a particular artist. Some of my favorite authors are on there and I’m on there too.
People have been asking how they can help. Not everyone can donate a kidney, of course. Not everyone can be there during surgery. You can support my writing and my journey though, if you so choose.
Jenny and I want to stay connected with the people that care about us and our story and want to support us through this tough and expensive processes. Staying alive used to be so cheap and easy when I was younger. Buying more years of life comes at a price now.
On the Patreon site you can chose how much you feel led to support. It can be 1$, 5$, 10$, or more. Everyone that pledges support gets full novels and novellas you can download that are no longer in print. You get a serial vampire story that is updated monthly. You have access to a number of readings of exclusive, original short stories already on the site and in many cases, available nowhere else. I like to think supporters are being provided quality content for their patronage. As you increase levels, you can unlock other perks. There will be a JAY’S JOURNAL. I’ll shift most of the personal monthly details of my journey there so that those that want to know more can. JENNY’S THOUGHTS will be a new feature for those that want to support at that level. Her thoughts and experiences will be shared there for those that are a part of our support system. You can also access JAY AND JENNY’S VIDEO JOURNAL. We will sit down at least once a month to record a video together. That alone will be worth the price of admission, I think. There are also other forms of correspondence for people that support at higher levels.
Every patron will get perks. Once people are giving larger monthly gifts, we recognize that it is no longer just about the writing, but at that point, you are really buying into supporting our journey. You are stepping up to literally buy me time on this planet and I can’t possibly express what that means.
I want to watch my sons grow up. I want to be there for my family as long as possible. I want to continue to create the stories that define my legacy on this planet as a writer. I don’t feel that I am anywhere near done with these things. There are no short stories or novels on this planet worth as much as that gift of time. By supporting me on Patreon, you are supporting my life and work. You will ultimately be contributing to the resources that will see me through a transplant and the recovery that follows. You will have access to exclusive content I’m putting up on the site for supporters, but you are really buying into my journey and my time on this Earth. That is more precious than anything I could offer in exchange. For our supporters, our commitment and goal is to keep them in the loop and to keep you posted on the steps of our journey. This is the most personal story I’ll ever tell and I’ll be telling it to you. Thank you in advance for being a supporter of my work and journey.
If you want to go fast, you go alone; if you want to go far, you go together. I want to go far and I need others to get there. Consider checking out my Patreon page and becoming a supporter of my writing and my bigger journey to a new kidney.
Doctor, when you say I need to cut back on caffeine, how far back are we talking exactly?!
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This is a wonderful post. I want to tell you (publicly) that you inspire me to do more with my life and to write better. I had a bad day this week where I felt depressed and doubted my writing skills. It was a horrible day for me, but it was all mental. After reading your post, it really put my “problems” in perspective. I realize now that life is meant to challenge us – to be more, to push beyond our boundaries. And my boundaries are made of marshmallows compared to yours. I appreciate your writing, candor and wisdom. I pray for you every day, Jay. And I look forward to your long and healthy and prosperous future. You can count on my support, always. God bless!