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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.

IWantToBelieve | @IWantToBelieve | Nov 27, 2017
In reply to @mklapperich "Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than..." + (show)
@mklapperich

Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than they used to be as low oxalate diet has become a solid life style change. Making thanksgiving dinner again this year, Half the food I make I can't eat but my family can so I make it for them. It sure is a blessing to hear the stories of others who also have had to make difficult life style changes. Thanks everyone for sharing your stories

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@hopeful33250 - Thank you for your prayers as I believe that is my best course of action at this point. Who knows. maybe one of the three donors that has offered will follow through and be the one. I just need patience at this point and I do have gratitude that my kidney function is decreasing slower than anticipated so I will enjoy the life I have now as long as possible.

REPLY
2011panc | @2011panc | Nov 27, 2017
In reply to @mklapperich "Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than..." + (show)
@mklapperich

Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than they used to be as low oxalate diet has become a solid life style change. Making thanksgiving dinner again this year, Half the food I make I can't eat but my family can so I make it for them. It sure is a blessing to hear the stories of others who also have had to make difficult life style changes. Thanks everyone for sharing your stories

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@lcamino I also have been surprised at the reactions of some people. First when I needed my pancreas transplant and was asking for caregiver assistance, so many people could not be bothered to give me any time at all to help out and others that said they would certainly help out backed out when the time came for them to show up. For my kidney transplant, I did not expect any of the failed caregivers to offer to donate and the did not. I did have a co-worker of my husband offer, but that went nowhere. Now I have a distant relative that was quite insistent about donating but I had huge reservations. I have doubts that he would qualify and I sincerely believe that he wants to make a major change in his life and escape his present dysfunctional family dynamics. I don't think donating a kidney to me will help him improve his life and future. I tried to talk to some other people about this but don't think they really understand. They said things like 'it's not your decision' and 'he's a legal adult' (just barely). I just shut up and never brought it up again around that group.

Having lived with transplant needs and receipt, I can't be too upset that people don't want to donate. Many of the people I know are Roman Catholic and have been raised to believe that their bodies should be buried intact. I am not Catholic and don't understand how that all works, but that is the way it is for them.

Thankfully for me, my kidneys have improved enough for me to be off the transplant list and without dialysis. I pray for all of us. Thank you all for sharing.

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IWantToBelieve | @IWantToBelieve | Nov 27, 2017
In reply to @mklapperich "Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than..." + (show)
@mklapperich

Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than they used to be as low oxalate diet has become a solid life style change. Making thanksgiving dinner again this year, Half the food I make I can't eat but my family can so I make it for them. It sure is a blessing to hear the stories of others who also have had to make difficult life style changes. Thanks everyone for sharing your stories

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@2011pa- thank you for sharing and explaining the beliefs of Catholics. I did not know that. I'm glad your kidneys are holding out thus far.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 27, 2017
In reply to @mklapperich "Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than..." + (show)
@mklapperich

Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than they used to be as low oxalate diet has become a solid life style change. Making thanksgiving dinner again this year, Half the food I make I can't eat but my family can so I make it for them. It sure is a blessing to hear the stories of others who also have had to make difficult life style changes. Thanks everyone for sharing your stories

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@2011panc, I am a Roman Catholic. And that statement is absolutely not true. I will look for references to clarify this.
Rosemary

REPLY
IWantToBelieve | @IWantToBelieve | Nov 27, 2017
In reply to @mklapperich "Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than..." + (show)
@mklapperich

Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than they used to be as low oxalate diet has become a solid life style change. Making thanksgiving dinner again this year, Half the food I make I can't eat but my family can so I make it for them. It sure is a blessing to hear the stories of others who also have had to make difficult life style changes. Thanks everyone for sharing your stories

Jump to this post

@rosemarya - thanks for clarifying. I guess it just goes to show that it just depends on the individual.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 27, 2017
In reply to @mklapperich "Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than..." + (show)
@mklapperich

Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than they used to be as low oxalate diet has become a solid life style change. Making thanksgiving dinner again this year, Half the food I make I can't eat but my family can so I make it for them. It sure is a blessing to hear the stories of others who also have had to make difficult life style changes. Thanks everyone for sharing your stories

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Thanks, @rosemarya I am glad to hear that belief is not true of all Catholics!

Teresa

REPLY
2011panc | @2011panc | Nov 27, 2017
In reply to @mklapperich "Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than..." + (show)
@mklapperich

Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than they used to be as low oxalate diet has become a solid life style change. Making thanksgiving dinner again this year, Half the food I make I can't eat but my family can so I make it for them. It sure is a blessing to hear the stories of others who also have had to make difficult life style changes. Thanks everyone for sharing your stories

Jump to this post

@rosemarya Thank you for your response. I did not think this was a global belief. I think it is more local and may possibly be just an excuse to make it easier for these people to refuse. I have noticed some illogical practices in this area that I know are not universal.

Everyone, please do not take my statements as global truths, as I said, I was not raised in this area and do not fully understand some of the local practices and tendencies. I just have to accept people as they are.

REPLY
JK | @contentandwell | Nov 27, 2017
In reply to @mklapperich "Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than..." + (show)
@mklapperich

Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than they used to be as low oxalate diet has become a solid life style change. Making thanksgiving dinner again this year, Half the food I make I can't eat but my family can so I make it for them. It sure is a blessing to hear the stories of others who also have had to make difficult life style changes. Thanks everyone for sharing your stories

Jump to this post

@lcamino it honestly never occurred to me that anyone other than family would reach out that generously. My husband’s barber, a hairdresser who I used to go to, actually tried to find me someone! She was not my blood type. With liver it’s an awful lot to ask. I even discouraged my daughter initially but she was very persistent right up until she wasn’t. I would feel better knowing she just changed her mind rather than what I worry about now.
JK

REPLY
JK | @contentandwell | Nov 27, 2017
In reply to @mklapperich "Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than..." + (show)
@mklapperich

Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than they used to be as low oxalate diet has become a solid life style change. Making thanksgiving dinner again this year, Half the food I make I can't eat but my family can so I make it for them. It sure is a blessing to hear the stories of others who also have had to make difficult life style changes. Thanks everyone for sharing your stories

Jump to this post

@2011panc I am a Roman Catholic and I believe that the church does allow cremation now. It seems stupid that they didn’t, the thing is “dust to dust”. Cremation just makes that happen more quickly.
JK

REPLY
JK | @contentandwell | Nov 27, 2017
In reply to @mklapperich "Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than..." + (show)
@mklapperich

Yes I too can struggle with food during holidays, pot luck ECT. Struggles are less than they used to be as low oxalate diet has become a solid life style change. Making thanksgiving dinner again this year, Half the food I make I can't eat but my family can so I make it for them. It sure is a blessing to hear the stories of others who also have had to make difficult life style changes. Thanks everyone for sharing your stories

Jump to this post

@rosemarya @lcamino @2011panc this all led me to google. The Catholic Church prefers burial but accepts cremation. The ashes are to be buried in sacred ground though, not in urn on a mantle or blowing in the wind.

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