Hi Susia, I was also surprised at the kevel of tremors after my transplant almost 5 months ago. Here is what has helped me deal with them:
1. Training your hands and focus with some form of handcraft. At first I cried out of frustration, then laughed, and finally gained enough control to feel some success.
2. When the tremors started effecring my gait and balance I called Mayo and got aporoval for physical therapy which I do twice a week.
3. The people on this blog topic reassured me that in 1 to 2 years as the tacrolimus level is lowered tremors become less frequent and less dramatic. Mayo also lowered my tac to 2 mg per day instead of 4 mg.
4. Lastly, I realize by being given a new life I have a new "me" and that brings new challenges as any change will. Acceptance makes all of the challenges much easier.
I hope this helps you. Barbara
@ajdo129, Congratulations on your recent transplant! You have shared some fantastic tips for living with your new organ. I absolutely love (and agree with) what you said: "Acceptance makes all of the challenges much easier." Thank you.
If you have shared which organ you received, I didn't see it. Which organ did you receive?
@ajdo129, Congratulations on your recent transplant! You have shared some fantastic tips for living with your new organ. I absolutely love (and agree with) what you said: "Acceptance makes all of the challenges much easier." Thank you.
If you have shared which organ you received, I didn't see it. Which organ did you receive?
On April 20, 2022 I had a full liver transplant.
All of this journey happened really fast. October 1, 2021 I felt like my gut was being used as a punching bag and I had every symptom of gall bladder or liver disease except jaundice; October 15 a possible gall bladder issue was suspected; October 22 I was told my liver enzymes were "way off the chart" high; October 26 I was told it might be bile duct cancer. November 2 a cancer surgeon said it was possibly inoperable and I had 2 months to possibly 2 years to live so my only recourse was to take chemo and radiation until my body couldn'take it any more and that I was too old for Mayo liver transplant. November 12 the diagnosis was definitely inoperable bile duct cancer. Fortunately when I called Mayo to see if they would consider me, the nurse practioner who did my liver enzyme test had already asked Mayo to consider me as a candidate and I had a Mayo number "identity". December 17 to December 31 May tested and interviewed me almost everyday. January 6, 2022 Mayo said I was on the transplant list but inactive until (January
through February) radiation and chemo 36 rounds, (March) a laporotomy to see if the cancer had spread. On Friday night April 17, 2022 Mayo called to tell me I was now active on the transplant list at a MELD score of 26. Sunday 48 hours later I got a call from the donor procurement team that a brain dead patient and potential liver donor was going off life support Monday and I should be ready to get to Mayo hospital late Monday. Tuesday the 20th at 2:20 a.m. my cousin got a text from the surgeon "old liver out, new liver in".
Later I saw photos of the old liver which was totally unrecognizable as a liver and looked like I didn't have even 2 months to live.
There are so many who wait for years for their transplant. I don't know why I was so blessed to have such a fast journey and I am ever so grateful to all those who helped along the way and gave me a new life.
So as I adjust to the challenges, changes and "new me" I look forward to a future I had imagined - providing free teacher workshops (I taught well over 9,000 teachers to use creative challenges to teach core subjects), continue working on my new art series "Arizona skies" and tremors permitting - dance. And who knows with this new life a future that though I hadn't imagined, I love!
@ajdo129, Your story is a powerful one, just as organ donation is a powerful thing! Did you have your transplant in Arizona?
Have you seen these discussions? Both were started an a place to share encouragement and hope for patients, caregivers, donor families, and living donors, I want to encourage you to share your story where it is going to be seen by more people.
- Organ Donation and Transplant: What is Your story? https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/
@ajdo129, Your story is a powerful one, just as organ donation is a powerful thing! Did you have your transplant in Arizona?
Have you seen these discussions? Both were started an a place to share encouragement and hope for patients, caregivers, donor families, and living donors, I want to encourage you to share your story where it is going to be seen by more people.
- Organ Donation and Transplant: What is Your story? https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/
Yes my transplant and all the procedures leading up to it were at Mayo Phoenix and Scottsdale campuses.
I have not looked at those discussions yet. Thanks for the recommendation. And thank you for all your work with Mayo Connect. Barbara
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@ajdo129, Congratulations on your recent transplant! You have shared some fantastic tips for living with your new organ. I absolutely love (and agree with) what you said: "Acceptance makes all of the challenges much easier." Thank you.
If you have shared which organ you received, I didn't see it. Which organ did you receive?
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1 ReactionOn April 20, 2022 I had a full liver transplant.
All of this journey happened really fast. October 1, 2021 I felt like my gut was being used as a punching bag and I had every symptom of gall bladder or liver disease except jaundice; October 15 a possible gall bladder issue was suspected; October 22 I was told my liver enzymes were "way off the chart" high; October 26 I was told it might be bile duct cancer. November 2 a cancer surgeon said it was possibly inoperable and I had 2 months to possibly 2 years to live so my only recourse was to take chemo and radiation until my body couldn'take it any more and that I was too old for Mayo liver transplant. November 12 the diagnosis was definitely inoperable bile duct cancer. Fortunately when I called Mayo to see if they would consider me, the nurse practioner who did my liver enzyme test had already asked Mayo to consider me as a candidate and I had a Mayo number "identity". December 17 to December 31 May tested and interviewed me almost everyday. January 6, 2022 Mayo said I was on the transplant list but inactive until (January
through February) radiation and chemo 36 rounds, (March) a laporotomy to see if the cancer had spread. On Friday night April 17, 2022 Mayo called to tell me I was now active on the transplant list at a MELD score of 26. Sunday 48 hours later I got a call from the donor procurement team that a brain dead patient and potential liver donor was going off life support Monday and I should be ready to get to Mayo hospital late Monday. Tuesday the 20th at 2:20 a.m. my cousin got a text from the surgeon "old liver out, new liver in".
Later I saw photos of the old liver which was totally unrecognizable as a liver and looked like I didn't have even 2 months to live.
There are so many who wait for years for their transplant. I don't know why I was so blessed to have such a fast journey and I am ever so grateful to all those who helped along the way and gave me a new life.
So as I adjust to the challenges, changes and "new me" I look forward to a future I had imagined - providing free teacher workshops (I taught well over 9,000 teachers to use creative challenges to teach core subjects), continue working on my new art series "Arizona skies" and tremors permitting - dance. And who knows with this new life a future that though I hadn't imagined, I love!
-
Like -
Helpful -
Hug
2 Reactions@ajdo129, Your story is a powerful one, just as organ donation is a powerful thing! Did you have your transplant in Arizona?
Have you seen these discussions? Both were started an a place to share encouragement and hope for patients, caregivers, donor families, and living donors, I want to encourage you to share your story where it is going to be seen by more people.
- Organ Donation and Transplant: What is Your story?
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/
Here is another one for you to consider, now or later!
-Snapshots of hope: Life on the other side of transplant. https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
It is fun to start at the beginning and read/see what fellow transplant members have experienced!
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1 ReactionYes my transplant and all the procedures leading up to it were at Mayo Phoenix and Scottsdale campuses.
I have not looked at those discussions yet. Thanks for the recommendation. And thank you for all your work with Mayo Connect. Barbara