Category Archives: Laura’s Posts

Thankful…

Today was good, I try to make the best of it.  My brother dropped by, not only did we enjoyed his company, but he also helped me a lot.  Our laundry machine broke and by the looks of it we didn’t think it would come back to life even if we try fixing it. Water was running through the back and got all of the carpet in our closet wet! We had to pull up the carpet. We thought it was one of the little ones peeing lol, but after a while, my husband told me that was way too much water lol!

My mother-in-law kindly gave her laundry machine to us. She said she would buy a new one for herself. It was hard to say yes,we have always been so independent, but with pending medical expenses and four little ones we had to be realistic; we humbly accepted. My brother help me connect the laundry machine so I could finally wash the baskets full of dirty clothes!

I am finally weaning off the cyclosporine. I’m only going to take it once a day for 14 days then I will stop. In preparation for the dialysis, I will be weaned off the other immunosuppressants as well. The transplant doc said that as of right now I would be a poor prognosis for direct transplant so we have to do dialysis.  They want to build my immune system back up to see if the parvo b19 virus goes away. They also said I was malnourished so they think dialysis will help.  It is hard because I will be seeing how my kidneys will slowly die.

My sister showed me a quote by Michael J. Fox that says: “Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it”.So that has helped a lot.

This Saturday felt like everything was falling apart. The air conditioner upstairs stopped working, the washing machine was broken, water was draining in the closet among other things going wrong. A friend came by after hearing about our carpet issue and volunteer to help Manny to take the carpet out it was starting to smell bad and then he came with his lawn mower and helped him cut the lawn.  My heart swells with gratitude, as I know we are not alone.  Life can be overwhelming but it is worth living it.

Thank you to all of the people that have kept my family and I in your prayers and positive thoughts.  I am not great at communicating because I’ve always been shy; but my appreciation is immense. A smile from a stranger soothes the soul when your aching. A simple hug from someone that just heard your story and can relate is priceless.

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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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