Changes after Transplant

Posted by 2011panc @2011panc, Nov 22, 2016

I have learned that following a transplant there are many changes beyond your physical situation. What is your experience? Has your mood changed? Are you happier, calmer, more agitated, more anxious, more relaxed or something else? Do you feel you have changed emotionally, spiritually or mentally? Do you feel that your personality has changed? I am curious about more than physical. I appreciate your input on this issue.

@metallicpea

Coming up on my 4 year liver transplant anniversary and my life has completely charge. At the time of my transplant my wife was six months pregnant and since the birth of my daughter three years ago, we’ve welcomed a second daughter just 4 months ago. Being alive and experiencing fatherhood is indescribable. Emotionally I do feel much calmer and more at peace since the transplant. For me the toughest part of my recovery was that my mind rehabilitated more quickly than my body. I think I wanted to be able to do more than my body would let me.

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@metallicpean, congratulations on all, life is good. I am so happy for you to be experiencing so many wondrous things. There is nothing like a new baby, and of course also nothing like the second chance to live that transplants provide.

JK

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@rosemarya

Before my transplant, I used to devour historical fiction. But now, I cannot tolerate anything fictional, including reading, TV, and movies. Has anybody else experienced this?
Rosemary

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I had a deceased donor kidney transplant in December. Initially I had not even the ambition to read, but now I am back to escaping in fiction books, movies,TV. I really need to escape. My husband died in July of cancer at age 59. We were devoted to each other and it is devastating. It is hard to sort out my post-transplant feelings vs. dealing with grief and missing him. Also my exhaustion–related to the transplant or to grief and the endless work of settling the estate of your beloved? I certainly note changes in thought patterns, work ambition, etc. but again it is hard to sort out. I’m so grateful for successful transplant, but this is a painful path.

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@rosemarya

Before my transplant, I used to devour historical fiction. But now, I cannot tolerate anything fictional, including reading, TV, and movies. Has anybody else experienced this?
Rosemary

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@linmarie, I offer my deepest sympathy to you on the death of your husband. Three years ago my dear brother died suddenly and I still vividly recall the grief due his death. I also remember my sis-in-law (more like a sister) and the pain she endured, and still does to this day. But her faith and her family have provided her with the ability to keep on going.

Congratulations on receiving your successful kidney transplant. I hope that you continue to do well. I think that it is okay for you to take it easy. In fact, I encourage you to do so.
Thank you for sharing on this forum the changes that you have experienced related to the transplant. I am always happy to meet another transplant recipient. I invite you to make a return visit, whenever you feel up to it.
Sending a Hug.
Rosemary
Here is one discussion that you might find interesting. Our members are sharing everyday healthy ideas.
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/

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@rosemarya

Before my transplant, I used to devour historical fiction. But now, I cannot tolerate anything fictional, including reading, TV, and movies. Has anybody else experienced this?
Rosemary

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@linmarie, I am so sorry for what you are going through. I cannot imagine having to deal with both simultaneously.
I hope the path gets a bit easier for you as time goes on and that you are able to move forward. I know it can be so hard.
Again, I am truly sorry.

I have some fatigue recently too, more than I did when I first started feeling better. I had reached a point where I didn’t feel the need for a nap but recently I find I frequently do. I’m not sure if it’s because of lots of activity or if it’s a reaction to my transplant, but it’s there.
JK

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Recipients, Donors, Caregivers,
What do you have that you would like to share?
In my opinion, the experiences presented by organ transplant recipients (and donors and caregivers) after receiving an organ transplant is a powerful testimony of strength and hope for all. Some of us have an uneventful recovery, and others experience some complications along the way. However we are all on the same journey = New Life through the gift of an organ transplant.

This is an invitation to ALL recipients, donors, caregivers, to be a part of this timeless topic: “Changes after Transplant”.

Here is the original question that one of our members,@2011panc posted.
“I have learned that following a transplant there are many changes beyond your physical situation. What is your experience? Has your mood changed? Are you happier, calmer, more agitated, more anxious, more relaxed or something else? Do you feel you have changed emotionally, spiritually or mentally? Do you feel that your personality has changed? I am curious about more than physical. I appreciate your input on this issue.”

Thank you @2011panc, for all that you do to support others.
In advance, thanks to all who are so willing to generously share to help others.
Rosemary

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There are two odd changes I’ve experienced. One, I abhor seafood of any kind and pre-transplant I was a fan. Second, I am no longer afraid of spiders. I didn’t have a conscious thought about it; nothing bubbled up and announced the revelation. I was at an outdoor gathering and there were two writing spiders in their web at the end of the porch and I just reached out and touched it without thinking about it. No fear whatsoever. It was surreal. I don’t *like* them, but the squeamishness I used to have is gone. I don’t react the same. The seafood thing was a physical reaction. My husband asked me to Red Lobster for a meal and I thought I would puke just thinking about it. Haven’t had seafood or fish since Oct. 2014. Which was when I received a new liver. There are some other odd changes like my taste in music, an obsession with color, creative expression wakened. Some I’m sure can be explained because of meds or age appropriateness or having a second chance at life. Whatever the reasons, I’m happy for the changes and my life has never been better!

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@bexhall

There are two odd changes I’ve experienced. One, I abhor seafood of any kind and pre-transplant I was a fan. Second, I am no longer afraid of spiders. I didn’t have a conscious thought about it; nothing bubbled up and announced the revelation. I was at an outdoor gathering and there were two writing spiders in their web at the end of the porch and I just reached out and touched it without thinking about it. No fear whatsoever. It was surreal. I don’t *like* them, but the squeamishness I used to have is gone. I don’t react the same. The seafood thing was a physical reaction. My husband asked me to Red Lobster for a meal and I thought I would puke just thinking about it. Haven’t had seafood or fish since Oct. 2014. Which was when I received a new liver. There are some other odd changes like my taste in music, an obsession with color, creative expression wakened. Some I’m sure can be explained because of meds or age appropriateness or having a second chance at life. Whatever the reasons, I’m happy for the changes and my life has never been better!

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@bexhall Strange, but I have also noticed changes in taste, lifestyle, and even entertainment and I am pre-op for a liver transplant. I have become more of a vegetarian almost completely cutting out meat in my diet. I also used to enjoy shellfish, curries and other foods that i now cant stomach. Although I have always been an avid reader I am reading almost exclusively cutting out television altogether. I do enjoy Netflix and Britbox though. I wonder how I will be affected post-op? Still haven't given up my fear of spiders yet!

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I have no logical explanation other than I understand this is very common. I have also heard that this is quite common for any major abdominal Surgery. My taste buds have changed for sure but nothing quite that drastic. My surgeon seems to think there is a link to the chemicals in the anesthesia. Many changes have been for the good… I really can't stomach a Big Mac which is probably a blessing in disguise. My rebirth date is August 12 of 2015 so even today I'm still finding new things about my body.

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@garyandrade

I have no logical explanation other than I understand this is very common. I have also heard that this is quite common for any major abdominal Surgery. My taste buds have changed for sure but nothing quite that drastic. My surgeon seems to think there is a link to the chemicals in the anesthesia. Many changes have been for the good… I really can't stomach a Big Mac which is probably a blessing in disguise. My rebirth date is August 12 of 2015 so even today I'm still finding new things about my body.

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@garyandrade If you’ve ever delved into this topic, you may have come across stories about how a transplant recipient had memories of the donor’s past traumas or perhaps read the book A Change of Heart by Claire Sylvia, a memoir about her heart transplant and how she experienced the donor’s love of certain food and drink. Each and every one of these stories can be dismissed as hocum. Personally, I think it’s a matter of what do you want to see or believe. How can any of these things be explained with full certainty? Are the changes physiological or psychological or both? Is cell memory a real “thing”? Who knows? I *do* know it’s a fascinating subject.

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@bexhall

There are two odd changes I’ve experienced. One, I abhor seafood of any kind and pre-transplant I was a fan. Second, I am no longer afraid of spiders. I didn’t have a conscious thought about it; nothing bubbled up and announced the revelation. I was at an outdoor gathering and there were two writing spiders in their web at the end of the porch and I just reached out and touched it without thinking about it. No fear whatsoever. It was surreal. I don’t *like* them, but the squeamishness I used to have is gone. I don’t react the same. The seafood thing was a physical reaction. My husband asked me to Red Lobster for a meal and I thought I would puke just thinking about it. Haven’t had seafood or fish since Oct. 2014. Which was when I received a new liver. There are some other odd changes like my taste in music, an obsession with color, creative expression wakened. Some I’m sure can be explained because of meds or age appropriateness or having a second chance at life. Whatever the reasons, I’m happy for the changes and my life has never been better!

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I am interested to learn how you fare post transplant. Please keep us posted! All the best to you.

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@garyandrade

I have no logical explanation other than I understand this is very common. I have also heard that this is quite common for any major abdominal Surgery. My taste buds have changed for sure but nothing quite that drastic. My surgeon seems to think there is a link to the chemicals in the anesthesia. Many changes have been for the good… I really can't stomach a Big Mac which is probably a blessing in disguise. My rebirth date is August 12 of 2015 so even today I'm still finding new things about my body.

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@garyandrade, Good Morning and Welcome to Connect. I am happy that you have joined our discussion. You can add me to the group of recipients who have changes with my taste for foods. I think that your Big Mac taste is great because it is to your benefit! Wouldn't it be great if all of our post transplant changes were towards better diet!
I am a liver/kidney recipient. I transplanted in 2009, and I, too, have learned to be alert to 'listening' to my body for sign of any changes.

Now, the most important part or my post:
!!! Congratulations on your transplant in 2015. Isn't it amazing how much life has changed:-)

garyandrade, As a volunteer mentor, I want to invite you to look thru our list of transplant discussions. I want you to feel welcome to join into any of the conversations and to join in anywhere. With your background as a recipient, I feel that you have a lot of experience in the listing, the waiting, and the recovering process that can be encouraging and helpful to our members who are currently going thru those events.

Can I ask which organ you received?
I am looking forward to hearing from you.
Rosemary

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@bexhall

There are two odd changes I’ve experienced. One, I abhor seafood of any kind and pre-transplant I was a fan. Second, I am no longer afraid of spiders. I didn’t have a conscious thought about it; nothing bubbled up and announced the revelation. I was at an outdoor gathering and there were two writing spiders in their web at the end of the porch and I just reached out and touched it without thinking about it. No fear whatsoever. It was surreal. I don’t *like* them, but the squeamishness I used to have is gone. I don’t react the same. The seafood thing was a physical reaction. My husband asked me to Red Lobster for a meal and I thought I would puke just thinking about it. Haven’t had seafood or fish since Oct. 2014. Which was when I received a new liver. There are some other odd changes like my taste in music, an obsession with color, creative expression wakened. Some I’m sure can be explained because of meds or age appropriateness or having a second chance at life. Whatever the reasons, I’m happy for the changes and my life has never been better!

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@bexhall, Wow! I can understand and identify with the food tastes. But the spider thing has me completely baffled! I still don't like spiders or any creepy crawly thing. Good for you.
Before my transplant when I was very ill, and minimal sense of taste, I fell in love with cinnamon. That is the one taste that has remained with me even after my transplant.

Thank you for sharing this personal experience. As a recipient, and now as a volunteer mentor, I am fully aware and appreciative of hearing about the experiences of other transplant recipients. Thinking back on my transplant life I can surely say that I wish I would have had the opportunity to converse with others in similar situation. We are like one big 'family' in a sense.
I have just returned from my annual evaluation appointment(s) and one thing that many of the technicians and nurses in a variety of departments noticed is the 'connection' that they have observed in the transplant patients that they see.

How long after your transplant did you have the seafood incident? What food choice have you found that will substitute for this favorite special taste?

Life is good! I will look forward to seeing you on other transplant discussions.
Rosemary

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@bexhall

There are two odd changes I’ve experienced. One, I abhor seafood of any kind and pre-transplant I was a fan. Second, I am no longer afraid of spiders. I didn’t have a conscious thought about it; nothing bubbled up and announced the revelation. I was at an outdoor gathering and there were two writing spiders in their web at the end of the porch and I just reached out and touched it without thinking about it. No fear whatsoever. It was surreal. I don’t *like* them, but the squeamishness I used to have is gone. I don’t react the same. The seafood thing was a physical reaction. My husband asked me to Red Lobster for a meal and I thought I would puke just thinking about it. Haven’t had seafood or fish since Oct. 2014. Which was when I received a new liver. There are some other odd changes like my taste in music, an obsession with color, creative expression wakened. Some I’m sure can be explained because of meds or age appropriateness or having a second chance at life. Whatever the reasons, I’m happy for the changes and my life has never been better!

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gaylea1 , I too, had severe food changes pre transplant. My sense of taste mostly vanished. That was compounded by nausea and the knowledge that I 'had' to eat to be healthy enough to have the surgery. I found that cinnamon and also lemon juice were my favorite condiments. My condition was complicated by the fact that I was also on dialysis, so I don't know if my experience is of any practical help to you.
I will be interested to hear about how your tastes change after your transplant. I know that your entire life will change!
I hope that you will soon hear that phone ring with your phone call of a life time. I know that the waiting is a difficult, one-day-at-a-time experience. It will happen – when the time is right.
Rosemary

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@garyandrade, I want to bring to your attention this event that is happening Tuesday. (corrected by me)
April 24 at 12 p.m. CT – a behind-the-scenes look at the procurement process for a liver transplant. After walking you through the process, Dr. Kris Croome, transplant surgeon at Mayo Clinic in Jacksonville, Florida, along with procurement tech Ana Kester and coordinator Jill Campbell, will answer your questions during the live broadcast.
This features a liver procurement process, however the process for other organs is similar. You can register with your Connect account (email address)
and you can also post questions.

https://connect.mayoclinic.org/webinar/video-qa-and-behind-the-scenes-liver-transplant/

@bexhall, @gaylea1 I know that you are already registered.

See you tomorrow!
Rosemary

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I've heard of this happening so often! I met someone at the Gift of Life House that has had two liver transplants and with each one her food tastes have changed. It is so fascinating. Just goes to show how much your body is connected. God does good work!

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