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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.

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

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@2011panc those people just may not realize that the church has softened its stance.
JK

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

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@content- oh what would we do without google? Do you remember when you just had to wonder about an answer, find someone who knew the answer, or go to the library and find the answer, assuming you did not own a set of encyclopedias? Sometimes I wonder how we grew up so knowledgeable and wise (hahaha)!

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

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@lcamino I wonder that all the time. My sister and I have often said how much my mother would have loved the internet. My son had a problem when he was a toddler and I had so much trouble confirming my “mother’s instinct” about it. I checked the library and every book I could find in bookstores before I could confirm that I was right. I think it was one of Berry Brazelton’s books that confirmed my hunch.

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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

Jump to this post

Here are the Organ donation References that I want to share with you. I have copied them directly from the United States Conference of Catholic Bishops (USCCB) web link. It is my opinion that many people are misinformed and confused by what they hear and see around them.

Here they are in the official language found on pages 553 and 554 found on line at: http://ccc.usccb.org/flipbooks/catechism/files/assets/basic-html/page-553.html

2296
Organ transplants
are in conformity with the moral law if the
physical and psychological dangers and risks to the donor are proportion­
ate to the good that is sought for the recipient. Organ donation after death
is a noble and meritorous act and is to be encouraged as an expression of
generous solidarity. It is not morally acceptable if the donor or his proxy
has not given explicit consent. Moreover, it is not morally admissible
directly to bring about the disabling mutilation or death of a human being,
even in order to delay the death of other persons.

2301
Autopsies can be morally permitted for legal inquests or scientific
research. The free gift of organs after death is legitimate and can be
meritorious.
The Church permits cremation, provided that it does not dem¬
onstrate a denial of faith in the resurrection of the body

I hope that this helps to clarify the confusion.
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 29, 2017

@contentandwell, I hope that your appointment goes well tomorrow. I'm looking forward to some good news about the healing and hopefully easing of the pain.
Rosemary

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JK | @contentandwell | Nov 29, 2017

@rosemarya thanks Rosemary. Things took a turn for the better on Friday and I am still hurting but not nearly as much, thankfully. I am trying now to cut back on the medications. I have only taken them once today and will take them again before bed. I finally can see the light at the end of the tunnel. I am convinced that somehow the transplant medications delay things because this is not typical of me at all. I know sirolimus does cause a delay so they switched me back to tacrolimus. That too probably has an effect but lesser. I think they will switch me back to sirolimus at my December appointment because tac is rougher on your kidneys.
JK

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 30, 2017
In reply to @contentandwell "@rosemarya thanks Rosemary. Things took a turn for the better on Friday and I am still..." + (show)
@contentandwell

@rosemarya thanks Rosemary. Things took a turn for the better on Friday and I am still hurting but not nearly as much, thankfully. I am trying now to cut back on the medications. I have only taken them once today and will take them again before bed. I finally can see the light at the end of the tunnel. I am convinced that somehow the transplant medications delay things because this is not typical of me at all. I know sirolimus does cause a delay so they switched me back to tacrolimus. That too probably has an effect but lesser. I think they will switch me back to sirolimus at my December appointment because tac is rougher on your kidneys.
JK

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@contentandwell - JK, Hooray!! It is sounding better and better:-) Rosemary

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JK | @contentandwell | Dec 1, 2017

@rosemarya It is better and better every day. Today I took no meds until about 11:30 and I took them then because my PT was coming. After next Wednesday I will have to switch to outpatient PT. Mark, my home PT has been wonderful. He is really caring and helpful. I will miss him. This is the third time I have had him. I can’t recall what I had him for the the first time but the second time was after my liver transplant. I don’t see PT again in my future and we have developed such a nice relationship I will miss him.
I hope that maybe by next week I can eliminate the narcotics. I will keep them in hand when we go to NYC because I know I will be doing a lot there and I suspect I will need them. I can’t believe how once this started getting better it progressed so quickly. I saw my surgeon yesterday and he as so pleased to hear my progress. He was seeing me more frequently than typical because of the extreme pain I was in but now I am back to normal and I will see him in January. What a huge relief to finally have some normalcy again. Phew...
JK

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13 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 1, 2017
In reply to @contentandwell "@rosemarya It is better and better every day. Today I took no meds until about 11:30..." + (show)
@contentandwell

@rosemarya It is better and better every day. Today I took no meds until about 11:30 and I took them then because my PT was coming. After next Wednesday I will have to switch to outpatient PT. Mark, my home PT has been wonderful. He is really caring and helpful. I will miss him. This is the third time I have had him. I can’t recall what I had him for the the first time but the second time was after my liver transplant. I don’t see PT again in my future and we have developed such a nice relationship I will miss him.
I hope that maybe by next week I can eliminate the narcotics. I will keep them in hand when we go to NYC because I know I will be doing a lot there and I suspect I will need them. I can’t believe how once this started getting better it progressed so quickly. I saw my surgeon yesterday and he as so pleased to hear my progress. He was seeing me more frequently than typical because of the extreme pain I was in but now I am back to normal and I will see him in January. What a huge relief to finally have some normalcy again. Phew...
JK

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JK @contentandwell

Hooray!! I'm so glad to hear your good report - congratulations. You must be so relieved.

Teresa

REPLY
JK | @contentandwell | Dec 1, 2017

@hopeful33250 I am jubilant to be finally dealing with a reasonable amount of pain.
JK

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