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First Post: An Introduction to My Story

Hello everyone! My name is Lex. I'm not sure where to start because there's so much to talk about. It all started when I was a senior in high school (2010-11). It was the beginning of the school year and I started to notice that my body would change from the beginning to the end of the day. My ankles seemed to be disappearing by my last class of the day. I was pretty sure this wasn't normal so I consulted my mother and she agreed with me. I suppose the discovery of my edema was the beginning of my journey. This story is sort of long so it's not easy to cover all the details in one post. Anyway, I saw my primary care doctor and with blood work and a urine test we determined the issue was likely kidney related. I was referred to a nephrologist and he decided on a kidney biopsy. The results of the kidney biopsy led to the diagnosis of idiopathic membranous nephropathy, a fairly rare kidney disease more commonly seen in older men (or so I was told). Being that it is idiopathic, we have absolutely no idea where it came from. Over the years we have speculated but the real answer is that we have no way of knowing. After that I was referred to yet another nephrologist in a different hospital who specializes in such kidney problems. He prescribed me tacrolimus and prednisone. At the time we were looking at my blood serum albumin to determine if the medication was working. We saw a little improvement but apparently it was not rising quickly enough so he switched me to a different medication (cyclosporine, if I remember correctly). Ever since then I saw no improvements. My numbers slowly got worse over the course of a few years and many different medications. The hope was that my disease would go into remission, but it never did. It has been endlessly frustrating and unfortunate but I've also learned a lot and have become a stronger person because of it. I've found a way to dwell less on the negatives and find some enjoyment in the positives of dealing with a chronic illness. You may be curious what the positives could possibly be but I'll save that for the next post! Currently I'm doing peritoneal dialysis at home every night. I've had one failed transplant (after a year) and am hoping for another, way more successful one soon. The first time I got a transplant the process was actually quite quick. This time it's different because I currently have other health issues. It's been a year since I had my transplant evaluation and am hoping that this is the summer I make some progress. This coming Monday I'm having a test done which will hopefully determine that I can have a transplant. There are so many topics to cover but for now I must sleep. Good night everyone! Yes, it's 2am and I am definitely a night owl.

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Jul 13, 2019

Great post! This is a fantastic blog post and we are so excited to see you post more throughout the late nights as a night owl! :)

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