1. < Transplants
Mentor

This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say 'Hi'. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

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

txpal | @txpal | Jul 12, 2022
In reply to @tream01 "Hi txpal! I have had similar feelings since being added to the list a few months..." + (show)
@tream01

Hi txpal!

I have had similar feelings since being added to the list a few months ago. Although I have a potential living donor, the anxiety remains. I had hoped to have my donor approved already, but now have oto wait another 4 weeks for him to have one last test run…. The anxiety is very difficult to cope with at times. The only thing I have found for relief if to try and live for today. We have no control over what happens in the future and there is no way of knowing how long we have to wait for “the call”. As long as I have a go bag ready, and keep my phone handy, I have been looking at this as my time to get exercise and eat right so I will be stronger when the time comes. I hope that helps a little, and wish you all the best!

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Yes and it helps to know someone else experiences the same feelings. It's like a roller-coaster for me, as soon as I forget about the transplant and try to just live a normal life, something happens and I know I have to be ready on-the-spot for the phone call. Thanks for sharing your experience!

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glengelmd1 | @glengelmd1 | Jul 12, 2022
In reply to @txpal "Hi, I'm pre-transplant for a liver and have a Meld score of 14. It was 15..." + (show)
@txpal

Hi, I'm pre-transplant for a liver and have a Meld score of 14. It was 15 when I went on the list. I have a hard time dealing with not knowing if or when the phone will ring with an available liver. In that short space of time I have to make mental adjustments no matter how ready I think I am. I deal with some anxiety over this, I'm almost 60 now and have been through a lot in life already. I passed all the tests I had to take to get on the list and now it's either my liver gets better or gets transplanted. I've lived with liver disease for about 20 years and hepatitis c was cured in 2015, Anybody have experience dealing with anxiety before getting a transplant?

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I find being grateful that I am alive today and that I am doing everything I can until a transplant can be done is the best way to avoid anxiety. Be positive . You have made it onto the list. My background is that I donated my kidney for transplant on 3/31/2022. My son received a kidney transplant that same day. Give your anxiety to God or your higher power. He can deal with it. I can't. I will think I will let Him!!

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txpal | @txpal | Jul 12, 2022

Thank you. Your words are inspiring and just what I needed to hear. Give it to God. I try to do that, sometimes it's hard. Reading your words of encouragement just helped me. Thank you. I'm starting to feel like I'm not alone when I read about you all.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 14, 2022
In reply to @txpal "Hi, I'm pre-transplant for a liver and have a Meld score of 14. It was 15..." + (show)
@txpal

Hi, I'm pre-transplant for a liver and have a Meld score of 14. It was 15 when I went on the list. I have a hard time dealing with not knowing if or when the phone will ring with an available liver. In that short space of time I have to make mental adjustments no matter how ready I think I am. I deal with some anxiety over this, I'm almost 60 now and have been through a lot in life already. I passed all the tests I had to take to get on the list and now it's either my liver gets better or gets transplanted. I've lived with liver disease for about 20 years and hepatitis c was cured in 2015, Anybody have experience dealing with anxiety before getting a transplant?

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Welcome to Connect, @txpal. I had a simultaneous liver and kidney transplant in 2009. I assure you that you are not alone with your feelings. On the bright side, you have been approved for the transplant, so keep on taking care of yourself by keeping doctor appointments, maintain a healthy lifestyle with healthy eating and activity.
My liver failure was due to a progressive liver disease that had no cure. I lived with it for around 8 years before it began to show symptoms and when I was referred to the transplant clinic and listed for a transplant. I was 60 when I got my transplant, and am doing extremely well and enjoying life to the fullest.
I want to share a link where you can meet and interact with others about the waiting. You will meet members (past and recent) who have discussed their own pre-transplant experiences. Like this particular discussion, it covers many issues that were experienced during the waiting. Your comments and questions are welcome!
-It's not all about the MELD Score
https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/
@tream01, @txpal -Here is an article that I wrote for the Transplant Blog in 2017.
-Staying Positive While Waiting for a Transplant
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/staying-positive-while-waiting-for-a-transplant/
@txpal, How are you feeling? Are you having any bothersome side effects of cirrhosis?
@tream01, I hope that you will soon get your transplant. 🤍

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chickytina | @chickytina | Jul 15, 2022

I had a bilateral lung transplant the beginning of May. How long does the shaking last? I know that it is due to the meds and am grateful for them, but I still have my hands shaking.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 15, 2022
In reply to @chickytina "I had a bilateral lung transplant the beginning of May. How long does the shaking last?..." + (show)
@chickytina

I had a bilateral lung transplant the beginning of May. How long does the shaking last? I know that it is due to the meds and am grateful for them, but I still have my hands shaking.

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Good Morning, @chickytina. Congratulations on your recent transplant! I am a liver and kidney transplant recipient, and I am familiar with the shaking hands, the tremors, that you are experiencing. In fact all of us transplant recipients share that medication side effect.
I transplanted in 2009 (liver and kidney). In the beginning, my dose of antirejection meds was at a higher level that it is today. My tremors were bothersome, even frightening until I spoke with my transplant team, and they assured me that it would go away (or become less bothersome) when the meds were reduced to a maintenance level. I don't recall how long it took, but the tremors did become reduced as my Tacrolimus dosage was reduced. I do still get tremors periodically, and it most noticeable for a while aster my morning meds.
I am guessing that you are still on high doses of your medications because of the recent transplant. Your body is still getting adjusted to your new lungs and to the medication.

Here are some discussion where medication, particularly Tacrolimus, and side effects is being shared by fellow transplant members. I invite you to take a look, and to join in the conversation.

-Transplant anti-rejection medications. What's your advice?
https://connect.mayoclinic.org/discussion/your-anti-rejection-medications/
-Tremors post kidney transplant
https://connect.mayoclinic.org/discussion/tremors-post-kidney-transplant/
Have you spoken to your transplant team about this? They will be able to tell you if your tremors are normal for your stage of recovery.

REPLY
1 reply
jackie421blfdgurl | @jackie421blfdgurl | Jul 16, 2022
In reply to @rosemarya "@jackie421blfdgurl - Do you remember when you became a member on Connect? You were asked for..." + (show)
@rosemarya

@jackie421blfdgurl - Do you remember when you became a member on Connect? You were asked for an email which is kept private/for internet connection only. And you created a name to identify yourself. This is to assure privacy of all members. I am a member who is a volunteer mentor, I follow the same rules and privacy as you do. I do not know addresses, and no one knows mine. I only know personal information that is occasionally shared in a Private Message.

A member's @name is a helpful tool.

-When you click on the Blue @name to will be taken to the member's profile page. You can read the short member introduction. You can see under the profile picture when the member was last active on Connect.

You will also see the following items:
Discussions (started my member)
Comments (member's public posts)
Reactions (like, helpful, hugs)

If you scroll backwards in this particular discussion to May 5, you will see a post by the member you are referring to.
You can click the blue @name and find discussions where member has participated. You (or I) can send a PM, but member will only get it if they are active (signed in).
Jackie, I'm sorry that I did not respond to your earlier PM.

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Good morning 🌻 my
Long distant friend.still no word from athelhea
Wish I had her phone number....

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chickytina | @chickytina | Jul 16, 2022
In reply to @rosemarya "Good Morning, @chickytina. Congratulations on your recent transplant! I am a liver and kidney transplant recipient,..." + (show)
@rosemarya

Good Morning, @chickytina. Congratulations on your recent transplant! I am a liver and kidney transplant recipient, and I am familiar with the shaking hands, the tremors, that you are experiencing. In fact all of us transplant recipients share that medication side effect.
I transplanted in 2009 (liver and kidney). In the beginning, my dose of antirejection meds was at a higher level that it is today. My tremors were bothersome, even frightening until I spoke with my transplant team, and they assured me that it would go away (or become less bothersome) when the meds were reduced to a maintenance level. I don't recall how long it took, but the tremors did become reduced as my Tacrolimus dosage was reduced. I do still get tremors periodically, and it most noticeable for a while aster my morning meds.
I am guessing that you are still on high doses of your medications because of the recent transplant. Your body is still getting adjusted to your new lungs and to the medication.

Here are some discussion where medication, particularly Tacrolimus, and side effects is being shared by fellow transplant members. I invite you to take a look, and to join in the conversation.

-Transplant anti-rejection medications. What's your advice?
https://connect.mayoclinic.org/discussion/your-anti-rejection-medications/
-Tremors post kidney transplant
https://connect.mayoclinic.org/discussion/tremors-post-kidney-transplant/
Have you spoken to your transplant team about this? They will be able to tell you if your tremors are normal for your stage of recovery.

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yes, they said should go away once body becomes accustomed to the meds. I was just wondering what others experience. The links that you sent were very helpful. Thanks.

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jeff79922 | @jeff79922 | Jul 18, 2022

Heart transplant recipient here. The shaking was pretty bad at first. I had to practice writing again because the shaking was so bad. After a while, most goes away, but it will still flare up when I am stressed or angry.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 18, 2022
In reply to @jeff79922 "Heart transplant recipient here. The shaking was pretty bad at first. I had to practice writing..." + (show)
@jeff79922

Heart transplant recipient here. The shaking was pretty bad at first. I had to practice writing again because the shaking was so bad. After a while, most goes away, but it will still flare up when I am stressed or angry.

Jump to this post

Hi, @jeff79922. I know what you mean about handwriting! I have to include threading a needle to the list. It was really aggravating at first, and I remember being told by one of my doctors that I would just have to get used to it. That made me a bit angry at first, however I soon cooled down and accepted it. The protection for my transplanted liver and kidney along with my good reports now at 13 years, made every annoying tremor morning worth it.
I still get tremors occasionally. They are always in the morning after my 8:00 AM Tacrolimus and Cellcept. Then, as if someone flipped a switch they disappear between 9:15-9:30.
Enjoy your day.

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