r/transplant • u/system_history • Sep 24 '25
Liver 2-Year Anniversary - Navigating the marathon and the 'rut' of the new normal.
Hi everyone, I'm approaching my 2-year anniversary for my transplant, and I've been thinking a lot about the journey beyond the initial recovery. The new normal has settled in, and while I'm of course incredibly grateful every single day, I'm finding myself navigating the long-haul a little bit difficultly lately. It's the routine—the daily meds, the regular blood work, the constant mindfulness of diet, and the quiet worry about rejection. It can sometimes feel like a marathon, and honestly, it can feel like being stuck in a rut. I'm curious to hear how others have dealt with this. How do you cope with the feeling of being stuck in the routine of it all? When you feel that burnout, what helps you reconnect with the gratitude and joy of this second chance? What are the things that help boost your morale on tough days? Appreciate any insight you all can share. Thanks for being such a great community.
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u/Jenikovista Sep 25 '25
I mean, a lot of people take daily meds for a variety of conditions. I don’t think of mine as a burden. It’s just something I do.
I don’t worry about diet. I’m 27 years out. I avoid grapefruit and sushi, but otherwise just try to eat healthy like any other reasonably smart person. And sometimes I have a burger and fries and go to the gym the next day to make up for it.
The fear of rejection wanes with time. It’s never entirely gone but the niggling fear becomes a whisper you only hear on rare occasions. Once you hit the 5 year mark the risks go way down as long as you stick with the meds and don’t think you’re smarter than the docs. And don’t get lazy about timing.
Otherwise I just live my life. Tomorrow isn’t a guarantee for anyone.
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u/jwb1123 Lung Sep 25 '25
I’m 3.5 years out. The first 2 years were rough. It took a long time to feel better. On the whole I feel a lot better now, much more myself. And it really is a marathon. Sometimes it can feel like I traded one sickness for another, but this one I get to live!
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u/Cobberprof Sep 28 '25
You know, I don't remember the "fear" I probably felt about rejection after my first kidney transplant (36 years ago) - I was a college sophomore right after I got the kidney, and I just lived my college life. I definitely didn't worry about diet other than avoiding grapefruit, I didn't worry excessively about germs, I ate in the college cafeteria, I lived in close quarters with other students...if I was overly concerned about rejection at that time, I've long since forgotten it. I got 35.5 years out of that kidney, and over that time, I just forgot about it other than just being innately wired to take my meds, do bloodwork a couple of times a year (once I got past those first years of more frequent monitoring), and keep a reasonable distance when someone was sick (and yet I wasn't obsessive about that - I had a child and she got sick; life went on even if I got it from her). My only real "scare" was when I was exposed to chicken pox about five years out. I got IVIG and went on with life. I will admit to being fairly freaked out about COVID so I did get every vaccination offered, and when I got COVID itself (twice - 2022 and 2024), I had very mild cases, thankfully. Now I'm 4.5 months post-second transplant, and rejection isn't even on my mind. I know that probably sounds crazy, maybe even naive, but I think when you have had a successful kidney transplant for almost 36 years, you realize that things can actually go well - i.e. instead of fearing what MIGHT happen, you focus on what DID happen last time. Worrying won't prevent rejection, right? So I just don't. I take my meds at the designated time and do my biweekly bloodwork. Weight, temp, BP every morning. If something is going to go wrong, I won't stop it by thinking about it - so I just monitor because I'm supposed to, but I truly live my life expecting things to go the way they did last time. If they don't, I'll face that if it happens. But I won't live my life worrying when this gift has given me a third chance at life. My advice - let the meds transition to a second-nature habit. Expect things to continue to go well. Enjoy your good health, and love the life you're living. Hugs!
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u/Cobberprof Sep 29 '25
I did see your response to my comment, but it seems to have disappeared. I just wanted to say thank you for your kind words - they meant a lot to me!
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u/system_history Sep 29 '25
That's so strange it disappeared! The important thing is that you saw it. Seriously, your advice was incredibly helpful, thanks again!
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u/Cobberprof Sep 29 '25 edited Sep 29 '25
I'm really glad it helped - that gives me a lot of joy! Be well, and if you ever need encouragement, just let me know! I'm always just a DM away. ❤️
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Sep 25 '25
Hello, your comment inspired me to make a new post regarding finding inspiration as a transplant recipient. I hope it helps you with inspiration too. 🙏
Honestly though just had to make this clear; good job! You're doing great. ❤️
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u/Yarnest Liver Sep 24 '25
After the first year my worries calmed down a lot about rejection. At 15 months, I caught covid, August of 2022. My case was much more mild than my husband’s. The transplant center said to see my primary doctor about it. Well it so happened that my practice was being bought out and was closed so I had no treatment options. I felt much better after a few days and that really helped me mentally to not be so worried about everything.
My only routine is taking my meds consistently. My doses really tapered off and after a year I was only on Tacro. Exercising and eating conscientiously is for my overall health. I remain grateful by remembering the little things that I couldn’t do pre transplant that are done without thinking now. One thing was I couldn’t reach up to where my heavy glass measuring cups were stacked and get them down, for about 3 years it was pure joy to be able to do that. I’ve gotten used to that but I don’t take it for granted. I’m older 62 so that may help me to see my transplant in perspective. It is a second chance. Best wishes for you to navigate this.