How did I end up with stage 5 chronic kidney disease (end stage chronic kidney disease) as a first time father to a newborn? In 2022 I had my first and only stint with COVID. This was well after I had been vaccinated twice. But like everyone else, when I tested positive for COVID I self isolated for over a week and didn’t leave my room until I was clear. Unfortunately I still had a cough that kept lingering around. After the first month, I went to the doctor and they told me it was just “long COVID” and it was nothing to worry about. They sent me home with an inhaler and told me it would go away in a few weeks. I called and went to the doctor twice more and still got the same answers. Fast forward six months and a loss of 25 lbs and the cough was still there. 

My wife (girlfriend at the time) begged me to go to the doctor once more. This time I got a new doctor who insisted that the cough was no longer normal and that I go to do my labs for a full checkup. Less than 24 hours later I got a call to say that my kidney functions were abnormally low (~40%). And thus started six months of tests to figure out why my kidney functions were so low. I went through a biopsy almost immediately and was diagnosed with acute interstitial nephritis, or swollen inflamed kidneys. The way my nephrologist (kidney doctor) described it, was that my kidneys looked very scarred. Things that usually caused something like this were: drug abuse (pain medication), drug allergies, autoimmune diseases, possibly HIV, and a few other causes. But I didn’t take medications often and tested negative for everything else. I was sent to various other doctors such as pulmonologists, hematologists, cardiologists, nephrologists and even infectious disease doctors who all told me that my case was “unremarkable”. Which admittedly sounds weird, but ultimately means that nothing stands out to them as causing the problems I had. The worst part was, I wasn’t like other kidney patients, and didn’t have any symptoms. No swelling, no nausea, no blood in the urine, no high sugar or sodium levels, it really was a silent disease, a silent killer.

After months and months and tests after tests, it was decided that we stop trying to diagnose the cause and to start treating me. I started immediately on a large dose of steroids (Prednisone) that my body reacted poorly to. But was told that the side effects would be worth it if it helped prevent my kidney function from deteriorating further. I was one of the few and I mean very few people who got uncontrollable hiccups from high doses of prednisone. So bad that at some points I had trouble breathing. But again I was told to stick it out cause the benefits would outweigh the side effects. And for a small while, it did. My function did stabilize but it didn’t get better. As the prednisone levels tapered down, the hiccups went away and instead my sugar levels went up, I gained weight, I got irritable, had terrible stomach issues and trouble sleeping. All side effects I put up with  in hopes of prolonging my kidney function. And then my function started dropping again, slowly. Week after week, month after month, I would just watch my function drop and drop. It felt like watching a slow new years countdown down, 30%, 29%, 28% etc. 

I don’t want to say that this time was all bad. I was diagnosed with acute interstitial nephritis only a few days after I got engaged to my now wife. And shortly afterwards I married my beautiful, smart, and loving wife. We were able to start our new life together in Austin Texas, where we adopted our loving golden retriever. All the while we tried to figure out what was going on with my body. Additionally we got pregnant and welcomed our baby boy to the world in June (after we moved back). But as my function got worse and I started to feel a little bit more sick, we decided to move back to Oregon where my family was so that my wife would have support with both me and the baby, should I become more ill. 

Back in Oregon, my nephrologist fast tracked me to start the process to get a new kidney. He believed that I was an excellent candidate to receive one, because I remain relatively healthy and am still fairly young. But that also meant my function was now well below 20%. For nearly three months it sat still around 18%. We hoped that it would be able to hold this way as long as possible to avoid dialysis and until I was ready/approved for my new kidney. Fast forward to April 12th, 5 days before my 32nd birthday and I found out that my function was down to 12%, which meant that I am now at stage 5/5 of kidney disease, also known as end stage kidney disease. I’ve now started getting the symptoms associated with someone at this level. The headaches, the trouble concentrating, lack of energy, nausea, etc. All come and go at any given time on any given day. My doctor’s have been perplexed about how quickly my function dropped from 18% down to 12% and not in a good way. I’m now sitting at 8% with dialysis.

The worst part about it isn’t my own suffering, it’s everyone else's suffering. Watching the people that I should be taking care of, take care of me. I’m no longer the strong husband, no longer the strong best friend, no longer the strong son, no longer the strong father that I’m supposed to be. The disease has crept in like a parasite, taking away my strength, my energy, my feeling of normality. Now I’m weak, now I’m tired, now I’m nauseous. I’m too scared to do things I want to do, too scared to go on the trip I want to take, too scared to go on a hike, or be active. Because I know how tired it’ll make me, how I won’t be able to keep up like I used to. The need for a new kidney is strong. With a baby boy now here, I’ve never felt so scared and so helpless. I’m not scared of death by any means, but I’m scared of everything I’m leaving behind. My wife, my son, my dog, my parents that I’m no longer able to take care of, and have been less able to be there for. I’ve been more tired, more nauseous than ever before. And unfortunately I'm unable to take any sort of medication because of the potential of it doing more damage to my already (nearly) useless kidneys.

All this to say is that if possible, I'm looking for a live donor who can help me extend my life a bit longer with a new kidney. Time that I’ll never take for granted, time that I’ll get to spend with my son, my wife and my family. I know that the decision to donate is not easy and nor is the process. It’s a big decision and there is a lot to consider. There is no shame in not wanting to donate, but if you or anyone you know are able to, please do not hesitate to reach out. Thank you