So, years ago, I titled this blog "The Kidney Boy". Mostly because I was pretty young when all this happened to me. I was a carefree 24 year old kid one minute, a chronic illness sufferer the next. It was a lot to handle, especially in the early days. "Kidney Boy" also has a fun little meaning to me; it's how my wife referred to me before we started dating. Her friends would ask her about the "Kidney Boy" and she'd smile.
I'll be 40 next year - a big leap in development, heh, or so I'm told. I've felt old for years, but I suppose years on dialysis and two kidney transplants will do that to you. I have two wonderful kids now, I married the girl of my dreams over eight years ago... I found the courage and the creativity to found a company and make the project of my dreams when I founded Infamous Quests and made our game "Quest for Infamy".
Not everything goes perfect, but it's been a life well lived since I was diagnosed with ESRD. I'm having a real tough time right now, though. My health has been shaky for the past six months or so, and recently it's been worse. I feel very fragile in a time where I want to be strong - we have two young children, my wife works full time at a wonderful job, and though my foray into software and game development was fun, it cooled and my company has faded away. Financially, I'm in dire straits right now, and it's producing a lot of stress and anxiety in me. I'm trying to deal with it the best I can, but I feel very useless. I'm very anemic lately, and it saps all my strength. I'm caring for the children now, but I have to try and find a way to bring income into my family while doing something that can accommodate my phyiscal and health limitations. I was very worried about this - I still am, but lately, I've had a sense of hope. I think things will go my way again, and I can begin to crawl out of this hole of debt I'm in. Debt is terrible, and when I was younger, I didn't always make the most savvy financial decisions. Navigating that arena is really difficult, and one of the hallmarks of becoming an "adult". I know some people are worse off than I am, and some are better off. I just want to get myself on track and help support my family. I accepted years ago that I would come with some limitations, and my life would be different than was expected of a typical man. I knew I probably wouldn't be the primary breadwinner in the family, and I am beyond happy to support my wife in her amazing career. I just want to be able to provide support to us all, and have my family seek life, liberty and happiness with some level of comfort. As a Father now, I hate to think that my children would suffer or go without because of my mistakes.
I am looking forward to this holiday season - I love my wife and my children so much, and I feel so close to our families. Being as sick as I've been recently has brought the love of family back into focus for me - not that it was gone, but sometimes you forget to put that extra oomph into the ones who love and carry you. I hope I can do right by everyone and make them proud.
Growing up is pretty crazy - I'm still growing, as an adult, and I'm having fun watching my children grow. May all who read this be blessed and loved and I wish you all a happy, safe and merry holiday season. Thanks for reading.
~Steve
I'll be 40 next year - a big leap in development, heh, or so I'm told. I've felt old for years, but I suppose years on dialysis and two kidney transplants will do that to you. I have two wonderful kids now, I married the girl of my dreams over eight years ago... I found the courage and the creativity to found a company and make the project of my dreams when I founded Infamous Quests and made our game "Quest for Infamy".
Not everything goes perfect, but it's been a life well lived since I was diagnosed with ESRD. I'm having a real tough time right now, though. My health has been shaky for the past six months or so, and recently it's been worse. I feel very fragile in a time where I want to be strong - we have two young children, my wife works full time at a wonderful job, and though my foray into software and game development was fun, it cooled and my company has faded away. Financially, I'm in dire straits right now, and it's producing a lot of stress and anxiety in me. I'm trying to deal with it the best I can, but I feel very useless. I'm very anemic lately, and it saps all my strength. I'm caring for the children now, but I have to try and find a way to bring income into my family while doing something that can accommodate my phyiscal and health limitations. I was very worried about this - I still am, but lately, I've had a sense of hope. I think things will go my way again, and I can begin to crawl out of this hole of debt I'm in. Debt is terrible, and when I was younger, I didn't always make the most savvy financial decisions. Navigating that arena is really difficult, and one of the hallmarks of becoming an "adult". I know some people are worse off than I am, and some are better off. I just want to get myself on track and help support my family. I accepted years ago that I would come with some limitations, and my life would be different than was expected of a typical man. I knew I probably wouldn't be the primary breadwinner in the family, and I am beyond happy to support my wife in her amazing career. I just want to be able to provide support to us all, and have my family seek life, liberty and happiness with some level of comfort. As a Father now, I hate to think that my children would suffer or go without because of my mistakes.
I am looking forward to this holiday season - I love my wife and my children so much, and I feel so close to our families. Being as sick as I've been recently has brought the love of family back into focus for me - not that it was gone, but sometimes you forget to put that extra oomph into the ones who love and carry you. I hope I can do right by everyone and make them proud.
Growing up is pretty crazy - I'm still growing, as an adult, and I'm having fun watching my children grow. May all who read this be blessed and loved and I wish you all a happy, safe and merry holiday season. Thanks for reading.
~Steve
Thank you for sharing your story and thoughts with us - I find them very helpful when going through the rollercoaster of difficulties and emotions myself of ESRF. I think we have good things coming our way in terms of improving the quality of life for renal patients like ourselves (have you heard of the Kidney Project? https://www.facebook.com/ArtificialKidney/), and it's something which always gives me positively when feeling a little low.
ReplyDeleteAlso it might be worth having a look at (and perhaps buying a little) Bitcoin at some point. It might help bring the financial support you and I need when our health makes it harder to pursue our careers. Just a though.
Anyway Merry Christmas and I wish you all the best in the future my friend.
Oliver.
When I was diagnosed with kidney disease, my doctors pumped me full of Prednisone and Cyclosporine - drugs that were supposed to help stop my kidney failure. . . But all it did was give me awful acne and make it impossible to sleep . . . I was soon overwhelmed with mood swings, terrible depression and psychosis that put me in the hospital.
ReplyDeleteThat’s when they told me my kidneys were close to failing!
Well, I found a better approach got rid of my kidney disease permanently...
http://www.healthwise101.com/kidney_disease
Thanks for sharing your experiences.
ReplyDeleteThis comment has been removed by a blog administrator.
ReplyDeleteThanks for shared your experience
ReplyDeleteGOD helps those who help themselves..
ReplyDeleteI just started reading your blog. Read it all in 3 nights after work. My husband was just diagnosed with stage 5 renal kidney failure (9% kidney function) and I am terrified. He just had his PD catheter installed and we are waiting on dialysis. I pray that I am a match for someone on the shared program or that we find a living donor as we wait to get on the donor list. I hope you are doing well and that you post some more blog entries soon to let us know what's been happening. Praying for you and your family!
ReplyDeleteJenn
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