I think, ,therefore I....

“It’s what you learn after you know it all that counts.” ~ Harry S Truman 

“The more I learn, the less I know.” ~Socrates

“My brain hurts.” ~ Vanessa

While far less profound, I believe the sentiment is spot on.  My brain does hurt. 

When I last blogged, my transplant list status had dropped to status 7 – meaning I am getting credit for putting in my time, but with the transplant center I’ve established with taking a hiatus from transplanting, I’m non-transplantable (not to be confused with non-transferable).  Learning this news via voice mail, I had few details and even fewer answers to all my questions.  Many of you may have read the linked article describing the events surrounding the ‘break’.  

Since then I have talked with a transplant coordinator, nephrologist, 2 receptionists (not as helpful), a pre-transplant nurse, a dialysis nurse and a social worker – all in an effort to get the scoop and find out what my new course of action will be.  Oh, and in between all that, and arguably the most productive and important action of all I’ve been consulting with the Great Physician to ascertain His guidance for my course.

Here’s what I know – the transplant center became alerted when 4 of their patients died within a short time of one another.  Initial reviews look like the deaths are unrelated or follow any specific trends – it is quite possible it could be totally unrelated.  But, erring on the side of caution, the center has shut down all transplant related activities to conduct a survey to examine their practice and if any changes are needed to the program.  Time will tell, but in the meantime I am not content to stay a status 7, especially when I am characterized as highly-sensitized, making a match more difficult.

I’ve spent the weekend and this week researching other surrounding centers.  I know could tell you the patient survival rate, graft survival rate and median wait time of multiple centers in the surrounding states.  Do you know what the difference is between 91% and 96% -- yeah I know you don’t have to be a math genius to figure this out, but is it significant?  The research says its not, but if you fall in that 4-9% its pretty significant, wouldn’t you say?

I’ve learned that there are programs in MO & OK that specialize in desensitizing immune systems of patient’s like me, but the results are still not consistently favorable.  Instead, the preferred method is paired-kidney exchanges.  If I were to have a willing donor, but they were not a match, the center would search their database of other patient-donor pairs with the same issue, find a donor that matched me who had a recipient who was a match to my donor.  Maybe you’ve heard about ‘chains’ of exchanges, I think Grey’s Anatomy had an episode depicting this practice.  This could be a way to make a living donor kidney a possibility, once again.  I have never stopped praying for this, but after nearly 15 potential donors mis-matched, my hopes weren’t high.  If anything this all is teaching me to not underestimate the AWESOMENESS of my God, and that I really don’t have control over this situation.  I can do my part to make wise, informed decisions, but ultimately He is in control and I am so glad He is!

I appreciate your continued prayers as I wade through the process of choosing a new center and wait list, for the wisdom to make these decisions and for God’s will in the procurement of a kidney.

~V
If you are interested in further information about paired-kidney exchange here's a link to news footage.   Here's a link to a video that describes paired-kidney donation.   http://www.paireddonation.org/