Help Nathan Fight Polycystic Kidney Disease

Hi, my name is Nathan and I’m battling Polycystic Kidney Disease (PKD). PKD is an incurable genetic disorder in which clusters of cysts develop primarily within your kidneys, causing your kidneys to enlarge and lose function over time. Currently, there is no cure so the eventual result is kidney failure which I experienced at the end of 2022. I have on been dialysis ever since.

I will have a dual bilateral nephrectomy in September to completely remove my kidneys. They are grossly enlarged at over 2.5 times normal size and now pose a serious threat to my ongoing health. Dialysis will keep me alive in the interim but it is not a cure and erodes health over time. To return to a healthy and productive life, I need a kidney transplant as soon as possible.

My PKD Journey

Most cases are inherited from a parent but mine resulted from a gene mutation. I was diagnosed at age 36 but my health didn't begin to deteriorate until 2015.

As kidney function deteriorated, I developed uremia - an accumulation of toxins in the bloodstream resulting in a host of cognitive and nervous system issues. I also experienced complications with my skin, weight loss, severe anemia, chronic insomnia and a host of additional issues.

Kidney enlargement caused chronic pain, gastrointestinal problems, and internal bleeding as my abdomen became noticeably distended. It's very painful to lie on either side or sit upright for extended periods.

I’ve been hospitalized multiple times per year, often weeks at a time, due to burst or infected cysts. I spent almost all of June in the hospital due to cyst issues.

Over the past 8 years, I've fought PKD with everything I had. I found a great care team at Cedars Sinai Medical Center in LA. I worked with a renal dietician to adopt a plant-based ketogenic diet while staying abreast of the latest research and engaging with the PKD research and charity communities. I tried Tolvaptan, the one approved medication for PKD. I continued to follow a disciplined fitness routine.

While these efforts helped me cope with the disease, they ultimately could not stop its progression. In October 2022 my kidneys failed and I immediately began dialysis. Three times per week with five hours per session are spent at a local clinic where my blood is removed, filtered and returned to my body. It enables my survival but dialysis doesn’t do the work of a healthy kidney and ultimately erodes health in all cases.

My kidneys continue to expand. I’m preparing to have a dual bilateral nephrectomy later this summer in which both of my kidneys will be completely removed. This will end pain and complications from cysts while removing the threat grossly enlarged kidneys pose to my internal organs.

Hope for a Solution

While the nephrectomy should improve my condition, neither this surgery nor dialysis offers a cure or a return to a productive, healthy existence.

Dialysis is not a cure for kidney failure. It is life support that enables you to stay alive. Currently, patients' average survival on dialysis is around 5 years.

The only solution is a kidney transplant. Fortunately, I’m considered an excellent candidate to receive a transplant. Doing so will allow me to regain my health and live a full, productive life again.

I’m already on the list for a deceased donor at my hospital in Los Angeles but unfortunately the wait time here and across California is 10 years. My nephrologist at Cedars-Sinai made referrals to hospitals in Phoenix, Las Vegas and Iowa with 3-3.5 year waits. Completing the listing process requires time and money but it certainly gives me hope.

A living donor offers the best prognosis on the most favorable timeline - six months or less from the donor's approval. I’d hoped to roll out a living donor campaign last fall but lacked the resources and bandwidth.

Why I Need Your Help

Over time I’ve become too ill to work and my savings have been drained to cover my cost of living and health care. I receive disability via Social Security but it doesn’t even cover half my basic expenses.

In addition, my wife of 5 years decided to leave our marriage last fall without warning shortly before my kidneys failed. Since then I’ve managed all of my care alone while scrambling to make ends meet. Dialysis is time-consuming and often leaves me feeling very fatigued. Days without treatment are consumed with managing my care, from insurance to prescriptions to care for other PKD-related issues.

I’ve been without stable housing for 6 months as I cannot afford rent. Unfortunately due to a serious car accident at the beginning of May, I no longer have a car as the insurance payout is considered part of the pending divorce settlement. With no cash in reserve or access to marital assets, I remain extremely vulnerable to such emergencies and unforeseen events.

As you can imagine, this has taken quite a toll on my mental health. Beyond the strain and distraction of financial insecurity along with the sudden loss of my partner and caretaker, I'm troubled by the lack of progress toward a transplant over this period. Knowing my health will continue to decline the longer I’m on dialysis further twists the ever-present knots of anxiety.

As an entrepreneur who put himself through college, I kept thinking resourcefulness would get me through this. A reluctance to open up about how difficult things have become also inhibited me from asking for help. I felt ashamed of my failure to navigate these challenges successfully.

It's now become abundantly clear to me the current situation is unsustainable. Thanks to the wise counsel of caring friends, I know it’s time to ask for help and I don't need to feel ashamed of it. Continuing along the current path will very likely result in a sad ending to my story that could’ve been avoided. And frankly, without those same caring friends I wouldn't have made it this far.

What Your Contribution Will Do

If this campaign is successful, it will cover the current shortfall in meeting my day-to-day needs as well as medical expenses for a period sufficient to roll out a living donor campaign, get listed on deceased donor lists at out-of-state hospitals with shorter wait times and have some cushion in case of emergencies.

With your support, I know I’ll have a place to sleep every night, food to eat, reliable transportation and the ability to prioritize my time and energy around the solution rather than merely struggling to survive day-to-day. Most importantly, I’ll be much closer to living a full life again. 

Please help me reach my fundraising goal so I can beat PKD - Nathan