Focal Segmental Glomerulosclerosis

Sending you a link to the UNC Kidney Center, where Patrick is a patient. It is awesome to see that he is in such an outstanding facility.  When I typed "FSGS" into google, their website was the #2 spot on the search results (after Wikipedia)!  If you follow the link below you can read all about FSGS, the different kinds, causes and treatments.  It is a thorough explanation and easy to follow.  I made some notes based on the criteria as it relates to Patrick's case.    

http://www.unckidneycenter.org/kidneyhealthlibrary/fsgs.html#looklike

-FSGS could have been present for a while, unnoticed until symptoms were present in September 2010
-it is not currently known if Patrick's disease is "secondary" or "primary"
-all of the symptoms listed have been present
-collapsing variant has been diagnosed
--the first symptoms that were noticed when Patrick was living in West Virginia were diagnosed as "Nephrotic Syndrome."  The docs at WVU thought it was being caused by something other than FSGS.

"End-stage renal failure" is the term used to diagnose the end of kidney function, and the need for a transplant.  He has not yet received this diagnosis, which means that the doctors are hopeful that his kidneys can maintain some function.  Dialysis treatment has been very successful so far, in terms of his quality of life.  Receiving treatments at the clinic from 7 am to noon three days a week is not ideal for a long-term solution, but for now it is allowing Patrick to reclaim the rest of his days and nights- his appetite is healthy, without the nausea, and he is sleeping soundly through the night.  There is even an option to have dialysis at home at some point in time, depending on what his medical team deems best.

Some of you have heard about our mother's hospitalization this week (Wednesday until present).  She is feeling much better and is scheduled to come home tomorrow, after a check-up following the minor procedure that took place this afternoon called "cardioversion."  A slight shock was given to her heart to reset its rhythm because although her blood-pressure has been dangerously high, her pulse was quite low and her heartbeat irregular.  We are so grateful that this episode did not result in stroke or other organ damage.  And all of her vital signs are now looking healthy and strong.  THANK YOU to everyone who called and visited while she was at Rex.  And to everyone reading this blog- words cannot express the gratitude we feel and blessings that you bring by sending your love, support, and concern.  Keep praying- it is working!

Last Summer in WV

A few photos from the Nelson Rocks Preserve in Circleville, WV.  This is where Patrick worked as a guide on the Via Ferrata, the "Iron Way."  Don't let his goofy grin fool you, it's a facade.  He was really shaking in his boots the whole time.  Not me, I conquered my fear of heights in mere minutes.   Can't you tell?

Introduction

About this blog- it's a hard for someone who doesn't usually do this sort of thing to write a blog.  Neither Patrick nor I (his sister, Kate) currently have a facebook account.  And these days, the internet is the best resource for keeping in touch with friends and family, and for sharing information.  Writing this blog is a way to use the "social network" and be in the loop with others.  Please follow and share, post comments. There have been so many changes and events in Patrick's health since September that it's been hard to follow and keep track. The more communication on this post the better.  All of your insights, questions, ideas, support, and love are welcome!  Anything that Patrick wants to share or needs can be posted here too.  For example if a new kidney is needed, someone reading this blog might just be a match.

There is no way for anyone to know what will happen in the future, the best we can do is be aware of what is going on in the moment, and what has led up to it.  For the past five months Patrick has been living with a "nephrotic syndrome" (kidney disease) that has led him to deal with a slew of unpleasant symptoms, a closet full of medicine, restricted diet, and frequent hospitalizations.  It's been a roller coaster-  in January a stomach virus caused severe dehydration and led to "acute kidney failure."  The hospitalization has been mentally and emotionally exhausting.  His doctors and team at the UNC Kidney center are globally recognized, and being in the care of such knowledgeable and compassionate experts has produced some very positive results.  Patrick is currently on an up-swing.  He is living at home, receiving out-patient dialysis three days a week, and taking good care of himself nutritionally (more to come on that later). 

The next posts here are mostly going to deal with topics, educational and specific to Patrick's needs.  If you know Patrick, please send him your love and support.  Mailing address and email to reach Patrick are:  patrickdunnagan@hotmail.com,
 2309 Wheeler Rd. Raleigh, NC 27612

As mentioned before, a living kidney donor may be needed for Patrick to recover, and it could be weeks, months, or years before we know if the disease will turn in that direction.  We will post information on how to be tested as it becomes necessary.  For now, please be aware that only a healthy person will be able to give, and will be able to recover completely and live a normal life.  The donor would have absolutely no expenses, yet is required to have health insurance (for their own protection, should a pre-existing condition be found during screening).  The only expense, and biggest sacrifice, is a 6 week recovery period after surgery, during which the donor could not work or engage in other strenuous activity.  Family Medical Leave Act can help cover lost wages, yet this depends on employment status.  There is no age limit for donating, however the best match would be someone near to Patrick in age.  Patrick would require an organ donor with type O blood only (positive or negative), and there is a series of other tests (DNA, etc) that have to be similar for the organs to be an acceptable match for transplant.  So stay tuned!  And thanks for you love and prayers.