FSGS- The Beginning

You know those life changing moments, those moments we do not plan but wait to meet us in the future?

I woke up Tuesday, January 10, 2006 feeling quite well.  I went about my day, went to work that evening, and went to sleep feeling fine.  The next morning, January 11, I met my life changing moment.  It embraced me in the form of extreme lower back pain, nausea, and chills.  I fell out of bed and literally crawled to the bathroom in the hallway.

After some time, I crawled back to my bed on my hands and knees and just laid there.  I did not know what was happening.  I knew it wasn’t the flu because my lower back hurt so bad I literally could not walk.  My life changing moment held me in its arms, but had not told me its name yet.

Friday, January 12, I found a doctor in my insurance network ( I did not have a primary care physician prior to this) and he examined me.  He believed I had kidney stones and wanted to do blood work.  After he got the blood results back, he referred me to a specialist in Richmond, Va.  He said a lot of large medical terms I did not understand, but there was one I did catch: kidney disease.

FSGS- Diagnosis and Options

I had a kidney biopsy and got the results on the morning of February 13, 2006.  It was then my life-changing moment whispered to me its name: Focal Segmental Glomerulosclerosis.  For great information on FSGS, go here.

Basically, the kidneys are made up of millions of cells called glomeruli.  The glomeruli filter the blood as it passes through the kidneys of toxins and other impuritites, and the filtration process produces urine and the toxins are passed out of the body.  What FSGS does is cause scarring of the glomeruli which causes the cells to stop filtering the blood, which halts the production of urine, which causes the body to retain fluid and all of the toxins and impurities.

As the glomeruli continue to scar, the kidney function continues to decrease to the point of having to either go on dialysis or have a kidney transplant.  The news was a bit much to take in, so I took the rest of the day off work to process what was happening to me.  I tried looking up information online, but it only served to freak me out more and I gave up that avenue of medical research.  So basically, my kidneys used to look something like this:


With FSGS, my kidneys are scarred and look something like this:


In my heart, I knew God was with me and would see me through this disease.  However, my mind was filled with worry and stress and general panic.

It was a few months after being diagnosed.  I felt like I was slipping into a depression due to worrying and focusing on the negative outcomes that I made a decision.  I decided to stop.  Stop worrying, stop focusing on the negative side of “what if”, stop being sad and feeling low.

Once I made that decision, my head caught up with my heart and I felt better.  My situation had not changed, in fact, it was getting worse.  But I felt better about it.  My thoughts, my heart, God, and my life-changing moment sat down together on the porch and had a cup of hot chocolate with whipped cream and a batch of warm oatmeal raisin cookies.

Onward to my adventure with dialysis…