Mood changes after transplant

@jovanna, Welcome! Congratulations on your liver transplant in Feb 2023! That was only one month ago, and your body is still recovering and getting adjusted to the strong medications that you need right now. As you continue to get stronger and continue to heal you will begin to become more active and gradually resume your previous healthy life.

I want to let you know that everything that you are experiencing has been experienced by other transplant recipients, myself included. I want to provide an article from the Mayo Connect Blog that explains it better than I can.
-Post-Transplant Mental Health & Well-being: Q&A with Shelia Jowsey-Gregoire, M.D.
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/post-transplant-mental-health-well-being-qa-with-shelia-jowsey-gregoire-m-d/

@jovanna, Have you shared this with your transplant nurse or doctor? My nurses at Mayo were able to reassure me that my feelings were normal for my stage of recovery. That alone was a huge relief!
One specific thing I remember was the guilt. No one, outside of transplant, understood that. I was ecstatic one moment. and in tears the next moment as I thought of my anonymous donor and his family. I had an anonymous deceased donor. Did you? In the future, (4-5 months) you will be encouraged to write a brief letter. It helped me move forward and beyond my guilt. Later, I can help you do that if you want help.

Remember that you are not alone in what you are experiencing.

I so appreciate the kind responses, already feel less alone thru this. I have shared with the wonderful nurses and will more at my 4 month check up. I sense their busy and really limited time wise and I feel they need to devote time to the in office recent transplant patients. I would definitely reach out if I was in a bad place. I felt it would be more productive to hear from others that have gone thru the transplant themselves. 🩷

I have given a great deal of thought about my donor who was deceased. I have yet to write the family. I did ask If I could and have not recieved a response as yet. I really which to share my gratitude and how this gift was a true life changing experience.

@jovana i had my transplant Nov 2021. I remember being surprised at my feelings, loss of appetite, loss of energy, and guilt feelings as I thought about my donor. What you are feeling is totally normal. I remember thinking, “An I supposed to feel this way’. I made a turn for the better around 3 months, then at 6 months again. Our bodies have gone through so much!

I had to wait for one year before contacting my donor’s family. I received a letter from them first. That set off another realm of emotions. My donor was a 14 year old child. It was nice to hear about her life and how loved she was.

It’s a wonderful thing, but definitely a tough ordeal to go through! It will get better. Hang in there! ♥️

I experienced depression post-kidney transplant, and I had a live donor.

I think our minds and bodies are so focused on survival, prior to surgery, and we are energized by all the fight or flight hormones for an extended period of time. For me, when the surgery, which I had been so focused on surviving, was over; I felt lost. The recovery took longer than I thought it would. My body had gone through a pretty major trauma, and the mind is part of the body. It has to go through a healing process as well.

Then the COVID pandemic hit, I had my surgery 2/2020. And where I had once been getting weaker everyday, suddenly I was getting stronger every day. My mindset went from to survival to "Now what?" Who am I, if I am not struggling to survive? Which sounds kind of pitiful, as I read it, but it was a very real stage of recovery for me.

The good news is that it gets better. I accepted the emotions, as part of my overall recovery. And decided I had a unique opportunity. My life had been over at age 54. And then I was given a new one. What did I want to fill it with? Who did I want to fill it with? What good did I want to put in the world, with this second chance? And I started to rebuild.

Everybody's journey is different. However, the emotional rollercoaster is definitely for real. Hang in there, it get's better.

Good morning
I had my liver transplant in October 2020. I rode an emotional rollercoaster but discovered most of it was to do with the meds. I also agree with some of the other posts, we go through so much prior to and after our transplants, that it's very hard to just slam on the brakes. As for contacting your donor family. Be prepared that it may never happen and if not don't take it personally. And if you do make contact be prepared for another °•~€¥it load of emotions. I have been very fortunate in communicating with my donor's Mum. We started with letters and in the fall I got to meet her in person. We text regularly and keep in contact. I have also meet the lung recipient. We are meeting up for tea at a local Tim Hortons on Wednesday. I can't wait. We three share something no one can know or understand. My donor was one month short of his 18th birthday. I really didn't experience survivor's guilt, not because Im a cold hearted bee with an itch. But because of my faith. My donor didn't die to give me his liver, I received his liver because he died. It does get better both physically and emotionally.❤️

Thank you for sharing your journey with me. I am not holding hope out about the donors family, I just have a feeling that she had a full life filled with love and grand children. She was 83. I see flowers when I visualize her, I feel her name was from a flower. I feel she was joyful and a fun grandmother. I have never had children an now I have empathy for all little souls like no ones business!
The physical aspects of the ex I experience are much more painful than anticipated. I was almost gone when I received my transplant but huge in desire to not let go. The physical is a drag being buried in 6 feet of snow and stuck inside. Grateful for my windows, and the woods I like in to see the birds surviving the harshness of this winter. Gives me faith. I'm hoping mood swings lessen and my creative gifts flow soon. The shaking hands from anti rejection meds stink! The drs say it will hopefully subside. I'll go with that.
Thank you for surviving, thank you for sharing with me and others. XO

Thank you for sharing with me. You nailed the emotion going from fighting to survive, being completely flattened in depression that I never experienced in my life. Each day I try to show gratitude and give back to others. It's frustrating for me to have friends say why aren't you doing this or exercising or eating this or reading that. Honestly want to tell them to go fix themselves.. I don't expect them to understand since I'm fighting to stop the negative thoughts when I should accept that it's temporary. Honestly It makes me not want to communicate with others that have not gone thru this because I couldn't have fathomed it either without going thru it. Is it normal to want to avoid the ones that have not been thru this?

When I had my transplant I was like a horse with blinders on and focused on one hurdle at a time. Last month which was one year after the 36 rounds of chemo and radiation. I was crying at everything and thought I lost my passion to dance. My doctor said that my body and mind had been through trauma a year ago and I was experiencing something like PTSD.
Tell your doctor what you are experiencing. Acknowledge the trauma and know that with the advice of the doctor the trauma will subside. Grief is also a part of the healing process.
I am back to dancing three times a week and feeling much better.
Keep the faith, Barbara

I think you want a broad support system - those that have known & loved you for awhile, and some new people, who have been through a transplant. The old friends may not understand transplant specific things but they care about you. The new friends can help a bit with the transplant specific stuff.
Your medical team should also be a part of your support system. Let them know you are experiencing depression, anxiety, impatience, or whatever your emotions are. The meds are powerful, especially at first, and sometimes they need to be lowered or switched. They can definitely add to depression, because they are, in fact, designed to depress our system, so as not to attack our new organs.