Sunday, January 20, 2019

Kidney News & #SIOD


Eight months with no surgeries...until the New Year. This time it's the Jeek Masters. So those new to our journey, or for those who forgot, Big Daddy Joe Mo donated his kidney to Emily 10.5 years ago. He had not one, but 4 incisional hernia repair surgeries over those next 3 years post transplant and would do it all again.  Emily has #SIOD a rare genetic life limiting dwarfism disease and he bought her some time. So when he started peeing blood a few weeks ago concern was obviously raised. Three doctor appointments and a CT scan later and here we are  getting his large kidney stone removed.  In his surgeons words, "since you only have the one kidney now we treat this emergent to make sure we keep that one working at its best."
The girls helped Joe come up with his 2019 word prior to all of this and the word is STRONG.  Good work girls, he is our rock.  Strong in body, mind and emotion for "his girls"!
Edit UPDATE on our patient: He is finally resting and about back to baseline glad it is done. He had a stent removed Monday, which helped!🙄
In light of the recent kidney challenges between Emily's spilling protein and Joe's kidney stone procedure, I wanted to bring focus to the renal disease portion of #SIOD .
GeneReviews states, "All affected individuals have progressive steroid-resistant nephropathy, usually developing within five years of the diagnosis of growth failure and terminating with end-stage renal disease (ESRD). All tested individuals have T-cell deficiency and associated risk for opportunistic infection, a common cause of death."
A friend wrote recently on one of my posts and I feel this is our mantra this year: "There is Strong and then there is Koesters Strong!" #believeinemily #littlegiants #dwarfismawareness #daddysgirl #transplant  #kidney #donate #life #Nebraska #researchfunding
 #transplant #kidney #livingdonor #daddy #love #believe #family #littlegiants