Read on to learn what happened and — most importantly — how you can help! Please don't discount your ability to make a difference, as every donation counts. If we can get even 100 people to donate $100 each, then we're already at $10,000, and that already starts to make some options practical that weren't before.
My dad's story
Three and a half years ago, my dad was diagnosed with chronic kidney disease and placed on the kidney transplant wait list at Tampa General Hospital. It was the culmination of several years fighting various renal-related problems like kidney stones, and the very medicine he was given to manage his pain ended up ravaging his kidney function, and making this outcome a near-certainty.
For most of that time, he was relatively stable and uninhibited, but over the last several months he has been getting fatigued more easily, shaking, and overall exhibiting more symptoms of poor health. On August 10, after he had missed several appointments and was exhibiting major fatigue and mental fogginess, my mom took him to the ER to get checked out. They said it was "probably just a blood sugar issue" from not eating (as he had been experiencing little appetite due to his kidney function).
My mom fought tooth and nail to get him into an immediate appointment with his nephrologist, who confirmed our worst fears: the ER doctors were wrong, and this was indeed outright kidney failure. He was put on emergency dialysis, officially putting him in the category of "end-stage renal disease" (meaning that his kidneys can not keep him alive on their own anymore). It turned out that he had developed what is called metabolic encephalopathy, meaning that because his kidneys were no longer filtering out the toxins in his body, they were just swimming through his blood stream and had caused his brain to swell.
Luckily, this was caught just in time, and the dialysis should stabilize him within 3-4 weeks — meaning his life was saved, but dialysis significantly inhibits both quality of life and ability to work. You have to receive treatment multiple times per week, for several hours at a time, and you still feel like crap afterward. For a lifelong salesman, that means time you can't be "pounding the pavement" (as my dad always put it) and generating income, and it also doesn't totally stop your health from deteriorating.
If we do nothing, he could be waiting 4 years for a transplant, his only long-term solution. And that too comes with costs like immunosuppressant drugs, travel, and time away from work both for him and my mom that needs to take care of him.
My dad has put others first for his entire life, in particular me and my mom. That goes for major sacrifices like working long hours to generate enough money that my mom could start her own business or so that I could attend the University of Michigan, as well as small ones like making sure there was pretty much never a little league baseball game that didn't have him rooting from the sidelines, or filling my room with books he read in his youth so that I would have someone to talk about them with (though I'm sure he wasn't totally unbiased in that either!). There are so many things we still want to share with my dad — things that get harder and harder with this disease and the financial burden that comes with it.
It's our turn to help him.
For any strangers that find your way to this page, this is who you're helping:
My dad's love of hats with abnormally large logotype is on full display in this photo, only to be rivaled by his giant Michigan hat (Go Blue!):
(Aside: if you are an O+ blood type, you might be able to help donate a kidney directly to my father and get him a transplant immediately. Donating a kidney is of course a huge ask, but it is safe and you can live a completely unrestricted life with one kidney, saving a life in the process. Please visit his donation campaign Facebook page for more information and get in touch: https://www.facebook.com/kidney4kenschiff/.)
How your money helps
Regardless of your political beliefs, the undeniable reality is that the health care system in the United States is a crushing mix of both public and private bureaucracy, where we pay more for worse outcomes, and money makes a major difference in your quality of care. While it's frustrating even for healthy people, you only realize the depth of how bad it truly is when you're dealing with a critical illness that affects your ability to work.
It's a series of unending catch-22's, where you're sick, but not sick enough to get priority, or qualify for assistance, or in some cases, even get the attention you need from doctors and specialists that are charged with your care. Meanwhile, you're stuck waiting for a transplant, unable to generate the same kind of income.
There are ways to accelerate your wait time for a transplant (like listing at multiple transplant centers), but they're limited to people that can afford high-out-of-pocket costs for travel and care. We can't — at least not without your help.
Your donation helps us:
- Cover living expenses while my dad is restricted in his ability to work full-time but is not yet eligible for social security or other supporting income (and my mom is taking care of him and spending time away from her business)
- List my dad at multiple transplant centers, which can get him a kidney faster (which require you to pay in advance for emergency medical transport, costing $15,000+ alone, but could accelerate his wait by years)
- Cover the cost of copays for my dad's prescriptions, doctors' appointments, and other medical expenses
My dad is not alone
My dad's story is unfortunately one of so many that are being failed by our current health care system. Kidney disease is the 9th leading cause of death in the United States, with an estimated 31 million people in the United States (10% of the adult population) living with chronic kidney disease. Nearly half a million of those people (now including my dad) are on dialysis, and the transplant wait list is nearly 100,000. Moreover, these struggles with the health care system are felt by anyone with a serious illness and their families — not just kidney disease patients.
Through your donation, you can help at least one family get through this process a little easier.
Please don't fall into the trap of thinking that small contributions don't make a difference. They do, if for no other reason than that I am going to go through every single donor with my dad and talk about how they each took time out of their day and money out of their pockets to help him and our family.
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