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.

hello1234 | @hello1234 | Jul 18, 2022
In reply to @rosemarya "Hi, @jeff79922. I know what you mean about handwriting! I have to include threading a needle..." + (show)
@rosemarya

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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Hi @rosemarya 😊
Yes, that is my experience with shaking hands (tremors) too. After a very successful 13 years post transplant (Yeah!!!!) and all of those years of adjusting your medications, I am curious what your current dosages are for maintenance each day? I am two years post transplant so still involved with "tweaking" and adjusting. I know that each person has their own medication cocktail tailored to them, but I am curious after 13 years what your daily med regimen looks like?

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katebw | @katebw | Jul 18, 2022

@jeff79922 I had a liver transplant 9 months ago. At first I had terrible tremors and it made me furious! My team was very understanding and said that if it was still this bad in a month, they’d consider changing me to an extended release tacrolimus. That was never needed as I became less tremulous and by 3 months post surgery tremors were gone. It really does get better. I’m no longer bothered by handwriting, typing, picking things up etc.

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Mentor
Lori, Volunteer Mentor | @loribmt | Jul 18, 2022
In reply to @rosemarya "Hi, @jeff79922. I know what you mean about handwriting! I have to include threading a needle..." + (show)
@rosemarya

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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I’d forgotten about the Tacrolimus tremors! I’m off tacro now, but during my 2.5 years with it I had the quirky tremors. It was a little difficult initially to feel comfortable with them since I was a career dental assistant, often assisting with oral surgery where my hands had to be incredibly steady. (Now retired)
I guess I just accepted the tremors as part of my life because I was so joyful to even have a life! A little shaking didn’t feel like that big of a deal. In fact, I did some of my coolest artwork during that period. My friends noticed the change and enjoyed my whimsical drawings. LOL. Little did they know, the squiggles and extra dots or designs on the paper were not intentional! 😂

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tasher3433 | @tasher3433 | Jul 19, 2022
In reply to @txpal "Thank you. Your words are inspiring and just what I needed to hear. Give it to..." + (show)
@txpal

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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Caregiver of a 2 year kidney recipient, mother of the donor. Some days go by and you forget the gift, other days you quake with worry. Give it Up, to whomever you relate to, and carry on. Be so grateful for each day, that might not have been. Find Your happy place, and enjoy the day.

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1 reply
hello1234 | @hello1234 | Jul 20, 2022
In reply to @tasher3433 "Caregiver of a 2 year kidney recipient, mother of the donor. Some days go by and..." + (show)
@tasher3433

Caregiver of a 2 year kidney recipient, mother of the donor. Some days go by and you forget the gift, other days you quake with worry. Give it Up, to whomever you relate to, and carry on. Be so grateful for each day, that might not have been. Find Your happy place, and enjoy the day.

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Hi @tasher3433 😊
How are things going now? Has everything calmed down for both donor and recipient or are there still some little "bumps" going on? I am also a two year kidney transplant...
very grateful too!

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1 reply
tasher3433 | @tasher3433 | Jul 20, 2022
In reply to @hello1234 "Hi @tasher3433 😊 How are things going now? Has everything calmed down for both donor and..." + (show)
@hello1234

Hi @tasher3433 😊
How are things going now? Has everything calmed down for both donor and recipient or are there still some little "bumps" going on? I am also a two year kidney transplant...
very grateful too!

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Congratulations! The donor had a clean 2 year check up! The recipient had a minor hiccup with a BK ( sp?) virus..tacrolimus was reduced, and infection cleared up…meds remain reduced. Still deciding on Mayo visit for ultrasound biopsy…waiting for local nephrologist to help decide. All else is great!

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1 reply
hello1234 | @hello1234 | Jul 20, 2022
In reply to @tasher3433 "Congratulations! The donor had a clean 2 year check up! The recipient had a minor hiccup..." + (show)
@tasher3433

Congratulations! The donor had a clean 2 year check up! The recipient had a minor hiccup with a BK ( sp?) virus..tacrolimus was reduced, and infection cleared up…meds remain reduced. Still deciding on Mayo visit for ultrasound biopsy…waiting for local nephrologist to help decide. All else is great!

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Hi @tasher3433
Thank you so much for the quick response.... You must be an excellent caregiver! 😊 I am very happy to hear the donor had a clean 2 year check up! That's awesome! Regarding the recepient getting BK virus with a reduction of immune suppression, I had a similar situation. I came down with CMV virus and they reduced my immune suppression (and meds continue to be reduced too). I think it's a common occurrence within the first two years. My immune suppression meds were reduced to 500mg Cellcept twice a day and 6mg Envarsus XR once a day. Is that the approximate dosage that she/he is taking too? (I am also in discussion about my upcoming 2 year protocol biopsy). Were there any symptoms of the BK or was it just found in the regular blood work? How is she/he feeling now?

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1 reply
tasher3433 | @tasher3433 | Jul 21, 2022
In reply to @hello1234 "Hi @tasher3433 Thank you so much for the quick response.... You must be an excellent caregiver!..." + (show)
@hello1234

Hi @tasher3433
Thank you so much for the quick response.... You must be an excellent caregiver! 😊 I am very happy to hear the donor had a clean 2 year check up! That's awesome! Regarding the recepient getting BK virus with a reduction of immune suppression, I had a similar situation. I came down with CMV virus and they reduced my immune suppression (and meds continue to be reduced too). I think it's a common occurrence within the first two years. My immune suppression meds were reduced to 500mg Cellcept twice a day and 6mg Envarsus XR once a day. Is that the approximate dosage that she/he is taking too? (I am also in discussion about my upcoming 2 year protocol biopsy). Were there any symptoms of the BK or was it just found in the regular blood work? How is she/he feeling now?

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Hi! The myfortic ( same effects but different from cellcept is the one reduced to 4x 180 mg/ day.
Re the 2 year protocol biopsy, very recent blood tests show no sign of infection so that decision is optional and will be discussed w local nephrologist ( Las Vegas).
The symptoms of BK were negligible, but showed up in the bloodwork. I assume you, too, see a vampire monthly?
The Vegas heat is very wearing in combination with AC, but spirits are high! Best Wishes!

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1 reply
hello1234 | @hello1234 | Jul 21, 2022
In reply to @tasher3433 "Hi! The myfortic ( same effects but different from cellcept is the one reduced to 4x..." + (show)
@tasher3433

Hi! The myfortic ( same effects but different from cellcept is the one reduced to 4x 180 mg/ day.
Re the 2 year protocol biopsy, very recent blood tests show no sign of infection so that decision is optional and will be discussed w local nephrologist ( Las Vegas).
The symptoms of BK were negligible, but showed up in the bloodwork. I assume you, too, see a vampire monthly?
The Vegas heat is very wearing in combination with AC, but spirits are high! Best Wishes!

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Hi @tasher3433 😊 I totally understand your Las Vegas HEAT! I am writing to you from sunny HOT South Florida where the "feels like" temperature is 103 today....thank goodness for air conditioning! I am happy to hear there is no more sign of infection and it was "nipped in the bud" with less immune suppression! Happily, the same is true with my CMV. Was Cellcept replaced with Myfortic due to tummy issues or was the original medication Myfortic? Is it helping any stomach issues?
And yes, I definitely visit the "VAMPIRE" on a regular basis! I like that expression, very cute! I think I am going to start to use that expression too. 😊

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1 reply
tasher3433 | @tasher3433 | Jul 21, 2022
In reply to @hello1234 "Hi @tasher3433 😊 I totally understand your Las Vegas HEAT! I am writing to you from..." + (show)
@hello1234

Hi @tasher3433 😊 I totally understand your Las Vegas HEAT! I am writing to you from sunny HOT South Florida where the "feels like" temperature is 103 today....thank goodness for air conditioning! I am happy to hear there is no more sign of infection and it was "nipped in the bud" with less immune suppression! Happily, the same is true with my CMV. Was Cellcept replaced with Myfortic due to tummy issues or was the original medication Myfortic? Is it helping any stomach issues?
And yes, I definitely visit the "VAMPIRE" on a regular basis! I like that expression, very cute! I think I am going to start to use that expression too. 😊

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😎🩴 Hi! Yes, Cellcept was not agreeable! Myfortic is doing the trick. I’m so happy to hear your CMV is banished from the body! It’s like a weight lifted, knowing that Bean is in prime operating condition. 🥳

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