Not an easy day today

Hello, my name is Laura and I am 35 years old. This is my first post. I wish I could go into detail of everything we have gone through in a span of 15 months but that would take me pages and pages. Countless emergency visits and hospital stays. This is not easy when at the time I had a 3 month old baby and 3 little ones. Maybe I can recount my story in bits and pieces later.

Today was a hard day, got a call from the nurse in regards to my blood test results, no improvements. I still had a small tiny glimmer of hope that things would somehow turn around. It’s hard to accept bad news. I always saw myself as a very fragile person. How can I deal with this? This was so unexpected all this happened within a time span of a 15 months. My nephrologist said I was the most unluckiest person she had ever seen in her office. I had no history of high blood pressure, no diabetes, no lupus. My immune system simply couldn’t fight the parvo b19 virus that caused my collapsing FSGS (that is what they assume, they are not 100 percent sure).

I had no history of any immune system problems. When you are in this position you think you are alone, but as I read of other personal accounts dealing with kidney disease I wonder how do they cope? It saddens me to see that other people suffer from this terrible disease. All I can do is hold on to the emotional support of love ones, it is invaluable. When I am down I think of my kids and how I have to stay strong for them. I’ve learn so much this year. Yes the world can be scary but I learned that people are kind hearted.

I am a shy person so it is not easy for me to open up but I feel like this is something I need to do. Maybe I can reach out and let anyone going through a similar experience that they are not alone.

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