Tuesday, January 17, 2012

Diagnosis

I haven't dedicated a post to what we have found out about Daddy's health.  I am sure most of you already know as you have been following on Facebook or through email but maybe some of you do not.  Daddy had his kidney biopsy done on December 13.  After a fiasco of trying to find out what the results of the biopsy were (long story...nutshell version:  lots of miscommunication!), we found out that Daddy does not have Minimal Change Kidney Disease as we were hoping.  He has what is called Focal Segmental Glomerulosclerosis or FSGS.  His kidneys are functioning at 30% right now and he is right on the line between stage 3 and stage 4 for Chronic Kidney Disease (there are 5 stages).  


After meeting with our Nephrologist and hearing his treatment plan for Daddy, we both feel that finding a second opinion would not be a bad thing.  We are in the process of doing that right now.  


We have made some really good connections since discovering his diagnosis.  Daddy spoke with a man who has FSGS and will be receiving a new kidney next month for at least an hour the other night.  We also have the phone number for another family who wants to talk with us about their daughter's experience with FSGS.  We were also connected to our local dialysis center where we met a social worker and dietitian who offered to meet with us whenever we wanted or needed to.


Daddy is feeling good.  There are no symptoms right now and for that we are so thankful.  He has been able to maintain his busy schedule and keep up with two little girls who love him to the moon and back.  


He is watching what he eats very closely and trying to exercise everyday.  We have to keep a close eye on how much potassium he takes in each day.  His potassium level was at 5.5 when we met with the doctor and they consider 6 to be the danger zone where there can be some serious issues with the heart.  The doctor decreased one of his medicines that is known to increase potassium levels.  We are hoping that will drop his level down significantly.  


Right now you can pray that this process of getting a second opinion would just speed up.  We have been waiting on people to make phone calls, fax forms, waiting on people to call us back who seem to forget to call back, and so forth.  It has created alot of anxiety as we just want to get a second opinion so we can make a decision with as much knowledge as we can get.  There are so many hoops to jump through and it is so frustrating when you are jumping through them but later find out that you jumped through the wrong one.  


If we do nothing, Daddy will be looking at a transplant or dialysis in 5 years.  The trouble with FSGS is that even if he were to get a transplant and have a healthy new kidney, the disease can return.  By that point we would know what treatment worked best for him though and hopefully we would be able to slow down the disease or hold it off for awhile.  


There is alot on our plate right now.  There are many decisions to be made.  There is alot going on in our lives.  I do get overwhelmed by it all but we are surrounded by great friends and a great church here in our community.  We also have incredible family support and friends from all over who deeply care about us.  Most importantly God has not left us to do this on our own.  


I just started a new Bible study at our church last Friday.  It is the study of James by Beth Moore.  I can already say after one video and a few lessons in that it is going to be good and just what I need for where I am right now.  During Beth's video introduction to the study she said something that really impacted me.  "Sometimes Christ has to take us all the way over here to change us into what He needs us to be so He can take us back to where we were to use us."  I feel like that is what He is doing.  If you had told me last year that we would be facing a major health issue this year, I would have laughed.  But here we are facing just that.  


Another great insight from Beth's video was that everything I hate about my past and my present has made a space inside of me.  Do I let that space sit empty or do I let it fill with the grace that only God can give.  Life is challenging but it is never meant to be empty!


This is where we are right now.  I will try to update as we know new things and such.  Thank you for all of your prayers.  Thank you to those of you who have done things anonymously to greatly bless our little family.  Thank you to those who have loved on our littles when we have needed to go to the doctor.  Thank you to those we know with medical background for listening as we have picked your brains.  Thank you to those who have brought yummy meals just at the most perfect times.  Thank you for listening to the prompting of the Lord...it has blessed us greatly!


"Have the courage to live under strain and pain to be part of a BETTER story.  A larger story.  Don't wimp out."  - Beth Moore

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