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.

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

@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 Iā€™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 didnā€™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 donā€™t *like* them, but the squeamishness I used to have is gone. I donā€™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. Havenā€™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 Iā€™m sure can be explained because of meds or age appropriateness or having a second chance at life. Whatever the reasons, Iā€™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 Iā€™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 didnā€™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 donā€™t *like* them, but the squeamishness I used to have is gone. I donā€™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. Havenā€™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 Iā€™m sure can be explained because of meds or age appropriateness or having a second chance at life. Whatever the reasons, Iā€™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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@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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@bexhall and @garyandrade I originally posted this question because I do feel that I have the influence of my donor on my attitudes and opinions. I do not believe there is at "test" to prove the existence of such a thing, just like you cannot "prove" that God exists. I do not have any memories, but I am experiencing some changes in attitudes about subjects that previously did not interest me. I have lost some of my zeal for previous passions, which I can associate with the fact that my donor did not share those interests. But, basically, underneath it all, like a hypnotic suggestion, you will not act against your firmly held beliefs and basic personality and choices.

I think my experiences are supported by the fact that I have always and still do have a deep, abiding and living faith; as well as believing in the spiritual world and that God is of the spiritual realm. Our souls are the spiritual part of our being that attaches us to God and return to him once our physical being is spent.

My faith is why I was not extremely stressed during the time I waited for my transplant. I have turned my life and my will over to God and I did the same with the outcome of my transplant experience. Once I was on the transplant waiting list and knew that the average wait was 2-3 years, I put the entire issue of transplant (so to speak) on the top shelf in the back. That meant that I continued to do the best I could for the body I had and continued to search, research and learn what was and was not working and adapt as necessary. What a wonderful blessing and surprise for me that I received the call within 6 months and it was almost a 100% match! It was at that point that I realized I was more ready than my friends and family; and identified how different it was to live with my life in the hands of God. It disappointed me that my friends and family could not accept and move forward with the confidence of having God in charge.

Please understand that I am sharing my experiences, not trying to preach, convince or convert anyone else. i do know and understand just how controversial my discussion of faith and God can be, so please accept my apologies if you are uncomfortable with this topic. Blessings to all in your transplant journey.

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@jodeej

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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@jodeej, JoDee, I also remember that smells were real annoying to me before transplant. The biggest bother was the smell of coffee! I do enjoy a daily cup of black coffee, don't misunderstand me. I was hospitalized periodically pretransplant, and I hated the smell of the cup of coffee that my husband would bring with him, or if it was on his breath. However, I was not willing to ask him to give up that one comfort that he could enjoy during those difficult times.

On a positive note, for my first post surgery breakfast, he brought me a cup of real coffee from the coffee shop (not the cafeteria coffee) and it tasted soooooo good to me!
Rosemary

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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 Shortly after my liver transplant my husband walked into the family room where I was and the sports network was on the TV. He immediately thought my liver donor must have been male! Actually I was not watching the TV, he had left it on. šŸ˜‰ I just recently received a letter from the parents of my donor and it was a young woman. I have noticed I enjoy some "hot" foods more than I used to but that's probably because as I age my taste buds have diminished a bit. I do not believe a new liver could influence anything about me.
JK

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@bexhall

There are two odd changes Iā€™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 didnā€™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 donā€™t *like* them, but the squeamishness I used to have is gone. I donā€™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. Havenā€™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 Iā€™m sure can be explained because of meds or age appropriateness or having a second chance at life. Whatever the reasons, Iā€™m happy for the changes and my life has never been better!

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@bexhall Hi, you have not specified a specific person in your message asking about faring post-transplant so assume it is a general question. My transplant was on 09.23.2016. I have fared excellently ever since, in fact I was doing great within a few weeks of transplant, better than even the transplant anticipated. The only problem has been that I have had some problems with the immunosuppressants. Tacrolimus was causing my creatine to get high so I was changed to sirolimus. Unfortunately the sirolimus causes me to have to take an anti-diarrheal. šŸ™ Small price to pay though, overall.
JK

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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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I was lucky enough to receive a Liver Transplant at Scripps hospital in San Diego. I contemplated being dually listed by I decided that staying in San Diego and fighting my HCC (cancer) to buy time was my best option. It worked out but my two-plus years on the waiting list was trying at times. I'm sure I could share some helpful experiences. I'm looking forward to participating in discussions as my time permits.

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