Hi everybody. Haven’t updated in a while! We flew up to Pittsburgh a couple of weeks ago for our monthly check-in at the transplant center. 

Unfortunately, Jacob’s creatinine has been trending up for about a month now and we are not sure why. 

The doctors thought it could be a hydration issue because it has become hot in Florida, so for a week we went back up to drinking 90 ounces of water per day. We repeated labs last week and his creatinine was still elevated.

We had an ultrasound of his kidney and bladder on Tuesday to look for an explanation, and everything looked great! Otherwise, all of the labs that look at possible rejection came back fine, so the doctors are not concerned that it is rejection. I spoke with the doctor Friday and after looking at my data and doing some research (and talking to our nephrologist here 😉) it’s complicated, but we concluded Jacob might be extra sensitive to the anti-rejection meds because he is extremely anemic right now. We lowered the dose and started iron injections again (poor guy, takes it all in stride though!) the doctor is scheduling a biopsy for the weekend of June 24th, which is when we fly up to Pittsburgh for the clinic check in. She said if his creatinine comes down, we can cancel the biopsy, but she scheduled it just in case. 

I know that the first year post transplant, there can be a lot of ups and downs and fluctuations with his health. But it still doesn’t make it any easier! My worries all of his life and prior to transplant haven’t gone away, they’ve just changed post transplant. 

In the meantime, school is out and Jacob is ecstatic! After missing two months of school, then returning to Florida and going back to school, he struggled a lot with focusing, 2 back to back illnesses and fatigue. I try to put myself in his shoes, and think, this kid had a kidney transplant with 3 hospital admissions, countless lab visits, waking up twice a night to catheterize, and he is still upbeat and has a positive attitude. (And he’s extremely anemic on top of that!) I can with 100% certainty say I wouldn’t feel the same!

We are so so grateful for the continued love from everybody! Keep it coming, and I will keep you updated. (Prayers and good vibes that this creatinine comes down with our next blood draw on Wednesday 🤞🏻 🙏🏻)