Did anyone experience anxiety after transplant?

Good afternoon

I'm 27 mos post transplant and still experience bouts of extreme anxiety. I don't take anything for it. I just "soldier on". Good luck on your journey. I find prayer helps.

@thatgirlneedsakidney
For a few months after my liver transplant I felt intermittently anxious which was new to me. I think for about 6 months. In retrospect I think it was the combination of tacrolimus which creates a shakiness, and a sort of post trauma effect- it was a scary time and I could finally take my guard down. I didn’t take medication for it but it might have helped. I don’t feel anxiety anymore but I think we’re all different. Try to get outside each day- to walk or sit- with intention, and thank the universe you’re alive. You’ll get through this, anxiety is natural.

@thatgirlneedsakidney, Congratulations on your 1st year with your transplant! I want to commend you for mentioning that you are working with your doctors to adjust your medicines. I am 13 years post liver and kidney transplant and I get the trembles on occasion even to this day, but nothing like what I experienced in the early post transplant time. Mine was apparently caused by my immunosuppressant meds, which I learned to live with due to the need for a particular level on immunosuppressants tom protect my organs. Over time I hardly noticed them, except in periodic times of stress. I also find that coffee/caffeine can be a culprit to increase the trembles.
Anxiety after can be made more problematic because of our medications. As I already said, you are doing the right thing to consult with your doctors about the immunosuppressants, and the anxiety medications. I hope that time will lead you to a resolution.

Were you prone to anxiety before transplant? Did you have a major medical event prior to transplant surgery that might be inducing the anxiety? I know that some people who have been hospitalized or spent time in ICU have indicted that they are struggling with anxiety after their experience. I'm just thinking out loud and if anyone of my thoughts leads you to a solution, I will be happy.
What about counseling? Have you tried counseling along with the medication?

I like this discussion on anxiety. I am prone to anxiety anyway, so 3 months post transplant, I trying to deal with it as best as I can. I know the tacrolimus causes shakiness and anxiety and meditation twice a day helps me, plus camommile tea. I was offered buspirone and celexa and saw that they can cause increased anxiety and restlessness in the first few weeks, so I did not try them. Walking helps in the sunshine, having a sun lamp helps and meditation. I am doing Feast for the Soul meditations now plus others. I used to take Chinese herbal supplements prior to transplant but they said no more supplements. I am open to other ideas for calming if you have them that are not meds. I always ask the transplant center to get permission to take anything internally. Thank you, BB

To add on to what Rosemary has said. Caveat here, I am not a transplant patient, but my husband is, having received a kidney October 2016.

When we go through something life-changing, that in itself can be anxiety provoking. New/different/scary surroundings, perhaps terms we don't understand completely, and in our compromised health state we are anxious. Then there is a procedure and now we have a different plan to follow, more medications, new way to eat, new way to live. Transplant notwithstanding, that can cause anxiety! My best thought is to talk to the transplant social worker and their team, get yourself some counseling, journal out your thoughts and feelings, get to the root of the anxiety. Medications in certain combination can cause increased anxiety, so think about getting a review of everything you take. It might be a simple as spacing your meds out to different times of day.

I don't know if any of this will help anyone, it's just what I have experienced in my health battles.
Ginger

I am approaching my 1-year heart transplant anniversary on February 7, 2025, and my anxiety has been up lately. My biopsies all showed no rejection, but I still sometimes worry I won't be around for my family. I am a therapist, so I know how to how to decrease anxiety, but it is tough for me at times. Can anyone relate or share their anxiety concerns about their transplant.

Hi @mddaviscares25, I moved your great question about anxiety after transplant to this existing discussion in the Transplants support group:
- Did anyone experience anxiety after transplant https://connect.mayoclinic.org/discussion/anxiety-1-year-post-transplant/

I did this so you can connect with others like @blbird33 @thatgirlneedsakidney, @footballmum @katebw who get it. I'm also tagging a few heart transplant members like @danab @estrada53 @scottij to see if they have something to add.

@mddaviscares25, it's tough being on the other side of the "guerney" so to speak. As a therapist you have the tools to decrease anxiety, but actually reducing the anxiety takes more than having a bag of tools. Am I understanding that correctly?

What do you find helps you? What gets in your way or triggers that anxiety again?

Hi @mddaviscares25 and congratulations on your 1 year anniversary. I just passed my 7th on January 5th. I actually went thru a tough period prior to transplant as my native heart was going into arrhythmias so often I really was struggling. I did see a therapist and was told to like take command over the anxiety. I would actually yell at my self that I was fine and some times it worked and other times it did not
But I guess for me when I got the new heart and they removed the pacemaker (which was the source of my anxiety due to being shocked) I was relieved and the transplant never really worried me. I know that not much help but wanted to at least say hi. The other thing that really helped me to believe that life was better than before is when they told me my EF went up to 70% from my old heart of around 40 % . The other thing that gave me a lot of confidence is the heart rehab center I went to after. They monitor your heart while exercising and during that time run it through its paces. Seeing the EKG was great while exercising gave me a lot of confidence also. Hope that helps. I did mine at a top notch heart Hospital so if anything did happen I was in the best place possible to get treated.

@thatgirlneedsakidney
Congratulations on your being a survivor! Well done. I am afraid I have little to add. I had emergency valve surgery in April 2019 which did not work and had a subsequent heart transplant in December of 2019. Though I was given several death sentences along the way I really do not remember any anxiety and the post transplant journey has been smooth sailing. I am, per my medical masters at Mayo, the most boring heart transplant patient ever. I told them I prefer the words stable of disciplined to boring. That said, anxiety, in my mind, is very natural. It is the body's way of recognizing risk and preparing for potential harm. Unresolved anxiety can have negative consequences. I have found if something is on my mind, I simply put that though into an action and the worry goes away. Yes, my to do list is long but I do not waste time by worrying. As my mother always said, "Acta no verba!" Actions not words.

Good luck and let us know how you are doing.
Best always,
s!
Scott Jensen

Congratulations on your one year transplant anniversary. I know it can involve so many feelings. I am 12 year's post heart transplant. I still experience anxiety. I'm clear with my doctor that I don't have depression but I do have anxiety (since there is a question on the annual form). I am on Duloxetine for it. I feel that some of it is a norm in my family but that some of it is related to my medical journey. I do my best to find activities that keep me calm /low stress. But we only have so much control over that. Wishing you the best in your journey.