It means so much to me that all of you took the time to send me hugs and good wishes on Facebook, Twitter and Tokbox and in all the other ways we stay close as friends.

This is such a scary thing for me. It feels like I'm re-living the entire experience as a young teenager when I first found out I had a serious chronic illness... the only difference is that I now know EXACTLY what road lies ahead.

I'm so very hopeful that things will proceed smoothly and that if my life's destiny to somehow find health that it will happen quickly (please!!) If my destiny is to continue bearing this burden, then I wish for the wisdom, strength and courage I've witnessed from many of my peers: The ability to be chronically happy and chronically positive.

I will keep all of you updated as best I can. In the meantime, I'm spending the next 3 weeks in NJ / NYC / PA with very close friends... I'm not quite there (I'll arrive tomorrow!) but I already feel surrounded by all of you...

Thank you - I love you all.

K

#MyKidney biopsy results = I've physically lost 25% of healthy kidney tissue in my transplanted graft due to scarring from an as yet still unidentified cause.

The only knowns are that 1) my original kidney disease (FSGS) does not appear to be re-occurring at this time; 2) there is no evidence of acute rejection, but 3) the damage could be the result of an on-going "chronic rejection".

Most likely the damage has been slowly occurring (beginning sometime after my previous biopsy 18 months ago) while there were no clinical (or physical) symptoms. In this regard, kidneys are very resilient and can compensate for quite awhile before damaged tissue takes over and the remaining function can no longer shoulder the extra load. This is why there is most often a delay (even in cases where patients are watched very closely, like me) in the onset of clinical evidence of a problem until a somewhat significant amount of damage or kidney function has been lost.

For reference: A transplanted kidney should be functioning around 60-80% of 'normal' (what someone with healthy kidneys would naturally have)

My transplant is now functioning at around 40-45%. That's scary.

Where I go from here: In three weeks, after returning from my #WTFamI2 roadtrip, my transplant team will transition me to another class of anti-rejection medication in addition to adding an ACE inhibitor to my med list. The mindset behind this is that one of the anti-rejection medications I currently take (Prograf) and have taken since the first day of my transplant can actually cause kidney damage in people who are sensitive to it. Therefore, the transplanted kidney can become "poisoned" by the very medication that keeps the immune system from the body rejecting it. It's a catch 22.

By using another medication in lieu if Prograf it will eliminate at least one possible cause of the scarring and damage. It may or may not make a difference. It's a "wait and see".

In the meantime, it's one big game of "hurry up and wait".... seems to be the story of m life.

I'm 2 years post-renal transplant. I've had no kidney complications, but I get bloodwork and see my doctor routinely every 1-2 months to monitor my health.

Three weeks ago during routine bloodwork, my serum (blood) creatinine level (a measure of kidney function) went from a very stable 1.0 (normal for me) to 1.4-1.5 (abnormal for me) indicating a problem.

Since, I have had several tests to determine what is wrong, including a renal ultrasound (to check for blood flow/blockages) extensive bloodwork, and medication changes. Today (July 27) I had a renal needle biopsy performed using sedation (mild anesthesia) at Tampa General Hospital. The procedure went as expected, without complications and only very little residual pain.

If the problem is urgent, I will know tomorrow morning and will be re-hospitalized to receive IV medications. If the problem is chronic or only mildly acute, it will continued to be monitored on an out-patient basis (with bloodwork and doctors visits, etc.) over the next few weeks, months, and ultimately throughout my lifetime.

I know that I have a 25% chance that my transplanted kidney could eventually become diseased with the original chronic kidney ailment (FSGS) that lead to my native kidney failure/dialysis/need for transplantation. So far, however, no other signs of FSGS reoccurrence have been clinically present, so at this time the doctors feel it is most likely not this issue.

It is also quite possible there will be no explanation for the jump in creatinine (the loss of kidney function) as this does happen from time to time in transplantees. The most I can hope for is that any damage already done can be reversed, or if not reversible, will not continue.

Hope this explanation helped!

Thank you all for your thoughts and messages - they've all meant so much to me.

<3 K