Oct 26, 2010

Another one???

Breathe in.  Breathe out.  Repeat. 

Some days you do this automatically. 

Some days you have to remind yourself. 

History:  Jacob turned 12 in July and had a check up which included a urinalysis.  Came back positive for protein.  Test after test came in showing something is not right with his kidneys and all pointed to Nephrotic Syndrome.  Due to his age, race and gender, the most likely version of that is Focal Segmental Glomerulosclerosis or FSGS. 

Biopsy came back today positive for FSGS.  This is the worst case scenario.  Why?  Because this is the one that doesn't respond to treatment.  If you cannot get the protein under control, you will die. Plain and simple. 

His biopsy showed 20% of his kidneys are currently affected with scaring, hardening and/or atrophy.  This is considered "moderate". 

Once your kidneys are having trouble, your liver gets involved and tries to help.  This causes high levels of cholesterol.  (His are over 300, normal for him is under 160.)   And eventually, the heart gets into the act to try to help the kidneys and you can easily have hypertension or other heart related conditions.  (We will see a cardiologist soon.)  You will also likely get very tired easily and could start losing muscle mass because the protein in the body is decreasing.  (His is.) 

So today ... we were told we should try the treatment anyway ... in case he's the one in a million that responds to drug therapy.  For him, that will be massive doses of steroids (which is not without it's own  horrible side effects).  We try this for 8-12 weeks.  Meanwhile, we'll do a urinalysis every 2 weeks and a comprehensive blood test every month to monitor his kidney function. 

If this doesn't work (which the doc suspects it won't), we have some choices.  All of which are bad.  Immunosuppressants are the most likely next choice, depending on genetic markers. 

All in all, without immediate divine intervention, we're looking at a transplant in 1-5 years.  At the rate he's progressing, the doc thinks closer to 1 year.  Transplant failure rate is high for this condition.  Relapse is about 80%.  Longterm survival is not very high. 

So ... here we go again.  Another life threatening condition. 

It's not every day you're told such news. 

I'm not wanting to get my head around this.  I'm wanting this to be a bad dream.  And I want to wake up. 

So how's Jacob in all this?  He's processing.  He is worried ... not about the statistics and data (he doesn't know those) but he can tell this is serious.  He knows.  He is being a trooper on the outside.  But I'm his mama ... and I can see the worry in his eyes.  Maybe even a slight depression. 

But he is still looking to God, his maker and healer.


  1. Seriously praying for a MIRACLE for your family and Jacob. Many HUGS!!

    Rhonda (Alaska)

  2. Oh Beth.....this is beyond heartbreaking. I am praying for that miracle and for the Lord to caryy you all and speak to his sweet mind and body right now.
    Big Hugs from Washington,