Newly (liver) transplanted…

Posted by jonepotter @jonepotter, Feb 26, 2023

So glad I performed a search for “Transplant Support Group.” I’m newly transplanted…two months and know there is lots to consider moving forward.

Is anyone aware of therapists who specialize in issues related to transplants? My transplant happened so quickly (due to my MELD score) and my head is still spinning from it. I’m also looking for online meetings with a support group as well…

Thanks!

jackpot

Interested in more discussions like this? Go to the Transplants Support Group.

I got my transplant 3 months ago today. I was diagnosed with a failing liver 1 year ago today. It’s crazy how fast things move when you need them to. I cry a lot. I get angry. I have the setbacks. And I’m 43 years old and not capable of this stress either. I joined transplantlyfe as well. It’s online and someone you feel a connection with will usually chat with you along the way. I’m happy to do so if you have questions. I wish you the best of health and happiness. You are capable of amazing things. Congrats on 2 months! Those are the HARDEST!!

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@kowalskik

I got my transplant 3 months ago today. I was diagnosed with a failing liver 1 year ago today. It’s crazy how fast things move when you need them to. I cry a lot. I get angry. I have the setbacks. And I’m 43 years old and not capable of this stress either. I joined transplantlyfe as well. It’s online and someone you feel a connection with will usually chat with you along the way. I’m happy to do so if you have questions. I wish you the best of health and happiness. You are capable of amazing things. Congrats on 2 months! Those are the HARDEST!!

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@kowalskik, I want to say Congratulations on your 3 month anniversary! I'm glad you found Connect, and I extend my hand in a virtual handshake of Welcome and support.
You have been through a lot over the past 15 months from diagnosis to failing liver to transplant to recovery, plus all of the worry and facing an unknown future while your health was declining.
I hope that your journey begins to take you on a calmer path as you progress to a more normal life.
I am quite a few years older than you, and I had my transplant since 2009. I can still remember how easily it was for me (and my husband) to break out in tears unexpectedly. Over time the tears will diminish, but I'm not sure that they will ever disappear. At least that is what it is like for me. I feel especially sensitive and teary eyed during the anniversary of some transplant related events. The past few weeks were the anniversary (for lack of a better word) of my being in ICU at my local transplant center with end stage liver failure, acute kidney failure and possible cancer in bile ducts. I was flown out of ICU to Mayo Rochester while wondering if...(you get it). The tears, tempered by the gratitude for my amazing anonymous donor for saving my life make for a moody me. With that behind me, I am once again ready to roll up my sleeves and face life to the fullest, again. So when I saw that you have just experienced 2 big events, diagnosis and 3 month anniversary, I can't help but wonder of this has an effect on you like my event had an effect on me.

You are the age of one of my sons, and I am going to tell you, just like I would tell him. Tell your transplant nurse or doctor about the stress and the anger that you are feeling. I think it would help you a lot to learn from your team whether your meds need adjusting. You might benefit from a short term medical intervention because it could be related to the trauma of the transplant surgery. Have you spoken to your transplant team about your emotions like the anger and stress that you are experiencing? Will you have a 4 month check-up coming up?

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@rosemarya

@kowalskik, I want to say Congratulations on your 3 month anniversary! I'm glad you found Connect, and I extend my hand in a virtual handshake of Welcome and support.
You have been through a lot over the past 15 months from diagnosis to failing liver to transplant to recovery, plus all of the worry and facing an unknown future while your health was declining.
I hope that your journey begins to take you on a calmer path as you progress to a more normal life.
I am quite a few years older than you, and I had my transplant since 2009. I can still remember how easily it was for me (and my husband) to break out in tears unexpectedly. Over time the tears will diminish, but I'm not sure that they will ever disappear. At least that is what it is like for me. I feel especially sensitive and teary eyed during the anniversary of some transplant related events. The past few weeks were the anniversary (for lack of a better word) of my being in ICU at my local transplant center with end stage liver failure, acute kidney failure and possible cancer in bile ducts. I was flown out of ICU to Mayo Rochester while wondering if...(you get it). The tears, tempered by the gratitude for my amazing anonymous donor for saving my life make for a moody me. With that behind me, I am once again ready to roll up my sleeves and face life to the fullest, again. So when I saw that you have just experienced 2 big events, diagnosis and 3 month anniversary, I can't help but wonder of this has an effect on you like my event had an effect on me.

You are the age of one of my sons, and I am going to tell you, just like I would tell him. Tell your transplant nurse or doctor about the stress and the anger that you are feeling. I think it would help you a lot to learn from your team whether your meds need adjusting. You might benefit from a short term medical intervention because it could be related to the trauma of the transplant surgery. Have you spoken to your transplant team about your emotions like the anger and stress that you are experiencing? Will you have a 4 month check-up coming up?

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My 4 month is scheduled for may…along with a stint placement. 😢. But I’m doing this as brave as possible. Steroids were awful to my emotions. But I’m tapered down now and doing better. I’ll cry a lot. Sometimes just thankful tears. Sometimes fear endured tears. Sometimes angry and unfair tears and sometimes tears I don’t even know why will fall. I definitely plan to speak with them but I feel ok this far all things considered. I’m so blessed when I take a step back. I just really dislike procedures and testing and those bring my emotions to the front. I know they are for my health, but I’m worn out. I will put on my tuff face and move forward. But not tell you it’s easy. Congratulations to you on your health and wellness PT! It’s so great to hear success stories!!! Makes me feel good knowing it gets better.

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@kowalski , Yay I am so HAPPY you got on this site, they r so helpful and will get u thru this. I like it better than the other site we r on let me know how your visit goes on either place.❤️💚 Melsamm
On Mayo it’s Myfablife
Sending u🙏🏻🌻🌈

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@kowalskik

My 4 month is scheduled for may…along with a stint placement. 😢. But I’m doing this as brave as possible. Steroids were awful to my emotions. But I’m tapered down now and doing better. I’ll cry a lot. Sometimes just thankful tears. Sometimes fear endured tears. Sometimes angry and unfair tears and sometimes tears I don’t even know why will fall. I definitely plan to speak with them but I feel ok this far all things considered. I’m so blessed when I take a step back. I just really dislike procedures and testing and those bring my emotions to the front. I know they are for my health, but I’m worn out. I will put on my tuff face and move forward. But not tell you it’s easy. Congratulations to you on your health and wellness PT! It’s so great to hear success stories!!! Makes me feel good knowing it gets better.

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U hang in there I remember those days. It will get better. I think u will like this site so much. U cry if u want to then wipe them away and do what u have to do to get better. I am just like u I HATE test to.. 💪🥰 melsamm

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@myfablife

U hang in there I remember those days. It will get better. I think u will like this site so much. U cry if u want to then wipe them away and do what u have to do to get better. I am just like u I HATE test to.. 💪🥰 melsamm

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Once again! You’re the best!!! You’ve helped me and guided me. Thank you!!!

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I am so glad that I have been able to help you, anytime! 💚😊🐾

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@kowalskik

My 4 month is scheduled for may…along with a stint placement. 😢. But I’m doing this as brave as possible. Steroids were awful to my emotions. But I’m tapered down now and doing better. I’ll cry a lot. Sometimes just thankful tears. Sometimes fear endured tears. Sometimes angry and unfair tears and sometimes tears I don’t even know why will fall. I definitely plan to speak with them but I feel ok this far all things considered. I’m so blessed when I take a step back. I just really dislike procedures and testing and those bring my emotions to the front. I know they are for my health, but I’m worn out. I will put on my tuff face and move forward. But not tell you it’s easy. Congratulations to you on your health and wellness PT! It’s so great to hear success stories!!! Makes me feel good knowing it gets better.

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@kowalskik, I understand your dislike for procedures, and I sense from your comments that you are accepting that they just have to happen in order to move forward. I agree with the words that @myfablife 'has shared, "It will get better."

I had a stent prior to my transplant, and it slipped out of place for whatever reason, and was removed and never replaced. But I was very ill then, and don't remember the details. Do you have a stent in place now? Is it a definite decision that you will have to have one?

Here is a new support group that is forming.
- Mood changes after transplant
https://connect.mayoclinic.org/discussion/mood-changes-after-transplant/
and be sure to visit this Blog Article that I shared:
-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/

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Dear Jackpot,
I’m sure your head is spinning, but it will get better. My husband needed a transplant after a catastrophic illness that ruined it, so I understand the shock and emotions. We had a longer time to process, as he waited, critically ill for almost 18 months. I found a therapist that specialized in trauma, who helped me sort through my emotions and anger that our lives had been completely upended. It takes time, but over the past year since he received his transplant and his health, we’ve both gradually worked through a lot of emotions, and most days settle on gratitude. Hang in there, and speak to your care team. They often can tweak meds, add new ones or suggest therapists. They want your transplant to be successful, and that means a return to health physically and mentally. Does your transplant hospital offer a support group? We’ve found ours to be incredibly helpful. Wishing you the best! Lynne

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