General
Medical monitoring
October 19, 2026
in General
I am wondering how you all are dealing with monitoring when you know that each time you visit the lab there could be something wrong that drives a new action? Historically, I have seen it as a surprise that I kind of look fwd to, knowing where I stand. Recently it is getting on my nerves and affecting my mood when waiting for data and even before and during the labs. I don’t know if this is due to the fact that I already lost one kidney and I am living with my second - but it makes me more anxious!!!
1 - 2 of 2 Replies
Karin, this is especially poignant to me this month. My extensive skin cancer history resulted in a major reduction to my immuno meds. While the cancers have seemingly stopped, my creatinine has gone a bit haywire these past 6 months. My team wants labs done at their clinic in another 90 days (with a second DSA test too; first was negative) and can't accept that long between visits with this degree of overall uncertainty, so I'm using my lab script in about a month at LabCorp. I absolutely get anxious and in a mood about numbers but also know I'm well-educated enough to know when something seems "off" and I don't aim to sound pretentious or knowing more than my transplant team but all patients deserve peace of mind and that's very important to me at this stage of my transplant journey (12 years out). Trusting my intuition has gotten me this far!
Transplant Patient
Oh no! I was just told I have another skincancer too and need more surgery next week.. I think I have had on average 2/year the past ten years! Twenty extra scars - not all showing but my nose will never be the same again.. they switched me back to MMF due to Azathioprine being a huge trigger (I moved to Azathioprine due to terrible diarrhea), so now I am back in the bathroom too often! We spoke about MTOR (sirolimus) but just was not strong enough evidence vs staying on the same proven immune suppressant therapy.
if it is not one thing it is another!