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Joe's Story

"Upon reaching the hospital and undergoing tests, the gravity of kidney disease set in."
As a young child, I often experienced terrible bouts of joint pain, which would lay me up for days at a time. I was also diagnosed with a blood disorder that causes bruising. But I embraced an active lifestyle, working at a physically demanding job and enjoying simple pleasures like remote camping excursions.                                  

It was in my early 20s that I learned I had kidney failure stemming from systemic lupus, an autoimmune condition that had gone undetected for years.

I remember being at work one day and feeling unwell. My ankles were swollen, and I had put on a massive amount of weight in previous months. Following bloodwork at a local clinic I went home only to be startled several hours later by the sound of blaring sirens outside my front door.

The doctor who reviewed my file saw my potassium was through the roof and was worried my heart would stop at any time, so when she couldn’t reach me by phone – the clinic had outdated contact information – she called 911 and they sent the police and an ambulance to come get me. Upon reaching the hospital and undergoing tests, the gravity of kidney disease set in. Normally lean and fit, I was quite heavy and I could barely walk due to huge feet brought on by fluid retention. In order to stabilize my weight and condition, I needed a concoction of drugs and blood transfusions over the course of a one-month stay. 

Bed rest really weakened me as my muscles had atrophied. However, once I knew I wasn’t going to die and that I could live on dialysis, I felt better. Obviously, I was worried at the beginning, but my anxiety went down.

After leaving the hospital, I started Tai Chi to help restore my balance and mobility. Following eight months of hemodialysis, I was fortunate to see my kidney function rebound, and I was able to avoid treatments for nearly 10 years. My two brothers are now being tested to see if one of them can be a donor for me. 

One day I contacted The Kidney Foundation for information about a disability tax credit and I ended up having a long chat about peer support. I then accepted an invitation to help others.  

When I was first diagnosed with kidney disease, I didn’t think I would benefit from peer support groups because I was your typical young guy and had a stereotypical idea about what support groups were like from television and movies. Experiencing them challenged that preconceived notion, and making friends turned out to be fun.

Kidney disease can really take its toll and wear you down, but I consider myself very blessed medically in that I have learned to manage the condition and have not let it stop me from having a good life, nor doing the things I enjoy most.