General β€” TransplantLyfe


Self doubt

TServoldTransplant Patient
March 23, 2024 in General

How to you handle the days where you feel like you are just waiting for your body to fail you again? The thought of "my body failed once before and it will again". This could be from your initial diagnosis to an episode of rejection, to needing another transplant, to any other time! It could even be the feeling of failing yourself - I have those frequently too since my initial diagnosis was T1D and a common misconception is" it's manageable these days".

I try and live my life to the fullest and have the all fun, and make the all memories but that little voice in the back is still there. I can't seem to shut her up some days. Even with chips and salsa πŸ˜‚ (totally kidding)

1 - 13 of 13 Replies

  • LeoLion123Transplant Patient

    I eat all day. Fear is so defeating. Yet so strong. How do you fight it???

    I'm only 3 months out. Too young to face these feelings. Too many too fast.

    God how I feel for teenagers right now. How do they do it?

    March 23, 2024
  • DebTransplant Patient

    I just experienced a month of fear of going through rejection for a second time in a year. I can’t sleep, I nibble all day but never really ate a meal, just living in fear. I don’t handle it very well at all. I am learning, thanks to my friends with Transplantlyfe, that I’m not alone in this and it common to have these episodes. I think we all deal with things in many different ways. I was lucky my biopsy showed no sign of rejection and my doctor wants labs every 2 weeks as a precautionary measure but I’m ok with that. Now like TServold said it’s going stow away in the back of my brain until I have another questionable MRI or labs but as I go through each one I do think it makes me a bit stronger. I do wish you both the best. LeoLion123 congratulations on you first 3 months. Give yourself time to adjust. My first test I was very emotional. Part of that was I received my transplant February 2020, right at the Covid outbreak so the whole eitkd shut down not just me. But you’ve got this. Stay strong!!!

    March 23, 2024
  • MelsammTransplant Patient

    I always dreaded getting my labs each month to but it was a blessing in a way, I have had one rejection recovered from that but my last labs were not good in reference to my blood counts, I have been recently dx. With AML cancer, I am now on a different journey i am in the hospital and have started my chemotherapy, oral chemotherapy pill, the Drs. r being aggressive my liver team is on board so we protect my TP liver I received 10/26/20.

    LeoLion you hang in there and fight!!! As I am in the fight to we cannot give up. πŸ’š Live Life u just never know!!!🌻

    March 23, 2024
  • AliEm14Expert
    Transplant Patient

    100%. My therapist says it's like I'm constantly walking around waiting for the other shoe to drop, because it has before. My nervous system has experienced so much stress and chaos and trauma it literally doesn't know how to react to anything else. And I've found I can either numb out and exist in this functional freeze state (hello scrolling TikTok for hours) or I can do the deep work of actually addressing my nervous system dysfunction.

    One of my favourite things to do when I start noticing this self doubt and waiting for the other shoe to drop is to orient to where I am that moment. I will literally look around and say "Am I being chased by a lion? No. Is there anything in this present moment that is making me actively unsafe? no. What can I orient to that reminds me I'm safe enough?" Not safe as in nothing bad is going to happen, but safe enough in this moment that I'm not actively fighting for my life. If its a case where I had a bad lab result or scan that stressed me out, I'll write down the plan (which I know by heart now because my coordinator has reminded me of this so many times) of how bad is bad, objectively not my opinion, and when we retest for labs and what I can do to help (like drink water...)

    March 25, 2024
  • Ldybug97Transplant Patient

    Before Transplant I used to put all my eggs in one basket and it was not good. I try now to turn on music to refocus my thoughts or try to focus on something else to get my mind off of it for the time being. I pray about it. I call my therapist if it’s to that point. I also have a very close relationship with my Transplant nurses and my Dialysis team so I just run it by them. I’ve learned to only put one egg in the basket now because I found in the past I was creating a storm that never really needed to happen. Sometimes just for fun. I watch Disney movies like Red Panda or Finding Nemo

    March 26, 2024
  • KarinExpert
    Transplant Patient

    @TServold - @lescp3 ans I were just reminiscing about when I told her about this very feeling… it is awful and it is common but it is also valid… why us and why now? I had a period of time last year when everything was failing - hip replacement, skin cancer that ruined my nose, dental abscess that caused two teeth to be pulled out and then dialysis due to the kidney failing… I was tired of fighting and just wanted to give up. Now I am well - new kidney, new hip and almost ready to get implants for my teeth but I worry / can I go through this again??? As long as my daughter is little I will…

    March 28, 2024
  • JClooTransplant Patient

    I’m new to TransplantLyfe…

    If you’re reading this you’ve survived all your worst days so far. It’s ok to get frustrated for a minute, punch a pillow, whatever, then ground yourself. You’ve all survived more than 99% of people walking this earth. I promise you can handle whatever you’re facing.

    Real quick, I’m 30 now but I had 3 liver transplants, leukemia, hip & knee replacement by 20 Y/O. I’ve since become a NYC EMT (among other things) and continue to work out.

    Have a bad day, that’s fine. But remember why you wanted to get healthy. Remember what you’re passionate about, think about your purpose on this earth and get after it!

    I didn’t fight through all that just to sit on the couch the rest of my life waiting for something bad to happen. If something happens you’ve all proven you can handle the worst anyway. End of speech, lol.

    All the best to everyone.

    March 30, 2024
  • MelsammTransplant Patient

    Hi JCloo I liked your speech.I have recently been dx with AM leukemia, after 3.5 yrs. LTP did they feel the leukemia was brought on by TP.

    March 30, 2024
  • JClooTransplant Patient

    @Melsamm there was never a distinct connection between the two. They were 16 years apart, the transplants were all before I was 2, cancer was at 18.

    They thought it was PTLD at first but biopsies came back as ALL. What’s your chemo protocol?

    March 31, 2024
  • MelsammTransplant Patient

    Hi,JCloo Right now I get labs twice a week chemo is 5xweek then off for two weeks. I just started and will have another bone biopsy 4/5 to see if chemo is working🀞🏻. I am also taking a chemo pill everyday for life. Drs. can’t really say I personally thought is was from the celcept.

    March 31, 2024
  • MelsammTransplant Patient

    JCloo I meant to ask how are you doing now.. Happy Easter🐣

    March 31, 2024
  • GarciaChauTransplant Patient

    Hi AliEm14,

    Your method really resonated with me. I constantly am waiting for the "shoe." I like how you regulate the feeling. It makes total sense. I'll start implementing it. I just had my angiogram with IVUS and they found an increase in plaque from my donor heart. I started spiraling (mentally, not zucchini) and had to be reminded to "put things in perspective." I researched, emailed my cardiologist and we created a plan after a brief discussion of the significance of the test and findings. There's medication available, I'll start it soon and see where it goes. We'll be monitoring and hopefully and prolong any future increases for a healthier heart.

    April 1, 2024
  • JeanmarieTransplant Patient

    Chips and salsa really help everything πŸ˜‚

    Over the 18 years of having a transplant, I have experienced several rejection episodes. So these thoughts run through my head a lot. I think the best thing that transplant has taught me that I think other people have not faced, is that we have come to terms with the possibility of death already. So we really truly live every moment to the fullest. I notice all the small miracles of life that I think many people miss out on. I am hyper-aware of every little thing. I consider it a gift. Every sunset or every interaction with anyone is incredibly special and I cherish every moment. Especially when I have chips and salsa. Haha.

    April 5, 2024
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