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 - 6 of 6 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!
Transplant Patient
I've been working with my therapist on this very thing. From having so much constant monitoring pre-transplant, now even the idea of monthly labs has me feeling almost claustrophobic. As far as doing the thing, I know for me it's a big deal and I need to schedule down time after. I also don't book anything on a friday, so if the results were to come back wonky I know I can call my transplant team and they'll be in office.
I agree with Kevin that being able to trust myself has played a massive role. not just in I'll know when something is off but that I make good decisions, and if something were to come up I know how I'd handle it. Maybe something is wrong, but maybe not. Literally just saying that to myself and then forcing myself to sit in the thought has actually been helpful.
So like yeah, maybe today I get news that my liver enzymes are high or my marker for something is elevated or whatever it is. Wow, that would suck, maybe that will happen. And maybe it won't happen. If it did happen, I'd probably get re-tested. So there's my plan, that immediately gives me space between getting the test and needing to determine an action. It's not an emergency, so I could take time and get second opinions. I can choose the option that best aligns with my care goals and what i want.
It also makes sense that I'm anxious because I survived one of the worst things that can happen to a person. if my anxiety makes sense, I don't actually need to fix it, it's just telling me something. so I can notice the anxiety, and then also notice how I'm in a safe space, or whatever brings me back to the present.
I never realize how anxious I am until after my appointment and I'm able to let out this breath that I didn't realize I was holding onto.
I have anxiety for every appointment just waiting for something to go wrong and it's because something has gone wrong for us before so these worries are valid. But also bothersome because when an appointment goes well, the anxiety has already affected us.
Therapy has helped a lot and I do a lot of self talk before and during my appointments like "What if something goes wrong?" "We won't know until it does. Levels were good last month, let's not freak out until we see what they are this month." Kinda like that.
Being on my second transplant as well, I feel like my anxiety has been so much worse this time around. I check my lab results as soon as they hit my patient portal and google what all the numbers and different tests mean because that makes me feel like I've got a little bit of control and knowledge and I'm being proactive in my care.
You're definitely not alone in your feelings though. It's hard and frustrating that this is what we have to go through to stay alive
I never realize how anxious I am until after my appointment and I'm able to let out this breath that I didn't realize I was holding onto.
I have anxiety for every appointment just waiting for something to go wrong and it's because something has gone wrong for us before so these worries are valid. But also bothersome because when an appointment goes well, the anxiety has already affected us.
Therapy has helped a lot and I do a lot of self talk before and during my appointments like "What if something goes wrong?" "We won't know until it does. Levels were good last month, let's not freak out until we see what they are this month." Kinda like that.
Being on my second transplant as well, I feel like my anxiety has been so much worse this time around. I check my lab results as soon as they hit my patient portal and google what all the numbers and different tests mean because that makes me feel like I've got a little bit of control and knowledge and I'm being proactive in my care.
You're definitely not alone in your feelings though. It's hard and frustrating that this is what we have to go through to stay alive
I never realize how anxious I am until after my appointment and I'm able to let out this breath that I didn't realize I was holding onto.
I have anxiety for every appointment just waiting for something to go wrong and it's because something has gone wrong for us before so these worries are valid. But also bothersome because when an appointment goes well, the anxiety has already affected us.
Therapy has helped a lot and I do a lot of self talk before and during my appointments like "What if something goes wrong?" "We won't know until it does. Levels were good last month, let's not freak out until we see what they are this month." Kinda like that.
Being on my second transplant as well, I feel like my anxiety has been so much worse this time around. I check my lab results as soon as they hit my patient portal and google what all the numbers and different tests mean because that makes me feel like I've got a little bit of control and knowledge and I'm being proactive in my care.
You're definitely not alone in your feelings though. It's hard and frustrating that this is what we have to go through to stay alive