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.

@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 Teresa, I see my surgeon on Thursday. I am really getting discouraged. I have always been one of those people who got better quicker than most so this is very unfamiliar to me and I do not like it at all. I definitely think it is somehow related to my post-transplant medications. They say part of my problem is not being able to take some OTC things like ibuprofen or Aleve.

I would be fine if they would go out without me on Friday night but they won’t. I hate being the person who puts the kabosh on things. 🙁
JK

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@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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I hear you @contentandwell. I always feel bad when my need to slow down (or eliminate an activity) keeps others from their plans. It feels disheartening, doesn't it?

I can understand how the inability to take Advil/Aleve would affect your pain. While OTC products are good for pain they are also anti-inflammatories that really go to the root cause of the problem. Are you able to use pain patches, creams, etc. with lidocaine?

I hope your doctor is able to give you some relief (and hope).

Take care,

Teresa

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@IWantToBelieve

@davidgenbarnes - So great to hear from you, and better yet to hear that, although not totally healed, you are feeling much better. What a blessing to feel good enough to be able to become active in a church community - a bonus for others and you. Have a wonderful Thanksgiving!

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@contentandwell

Sorry to hear that you didn't make it into the elite "Mercedes" crowd, but you did provide me a smile for the day! Thanks for that,
Teresa

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@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 I never thought topical and they haven’t mentioned them but I suspect that would be fine. Thanks for the suggestion. Tylenol is helping with the pain a little bit but of course it does not have the anti-inflammatory ability that the NSAIDS do.
JK

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@IWantToBelieve

@davidgenbarnes - So great to hear from you, and better yet to hear that, although not totally healed, you are feeling much better. What a blessing to feel good enough to be able to become active in a church community - a bonus for others and you. Have a wonderful Thanksgiving!

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@hopeful33250 I gave my surgeon a smile too. My husband thinks he likes me because he thinks I am the surgeon’s star patient but I think he probably treats all of his patients that way, or he likes that I do get a bit humorous sometimes. Heck, he’s my surgeon but he’s also human and he’s not the type of doctor who thinks he’s a god.
JK

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@IWantToBelieve

@davidgenbarnes - So great to hear from you, and better yet to hear that, although not totally healed, you are feeling much better. What a blessing to feel good enough to be able to become active in a church community - a bonus for others and you. Have a wonderful Thanksgiving!

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@contentandwell, You have described qualities of a truly great doctor! I also have several who easily qualify:-)
Rosemary

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@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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@contentandwell JK, I think that you have a wonderfully supportive family who will change their plans to accommodate your needs. It really demonstrates their love for you. I do understand your way of thinking, though.

As far as your knee pain, do you feel that the pain is easing just a little bit? As I may have said before, it has been my experience that everything seems to take longer to heal for me since transplant. But, as you have indicated, this is getting old. I hope you can hold out until Thursday.
Rosemary

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@IWantToBelieve

@davidgenbarnes - So great to hear from you, and better yet to hear that, although not totally healed, you are feeling much better. What a blessing to feel good enough to be able to become active in a church community - a bonus for others and you. Have a wonderful Thanksgiving!

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@rosemarya My surgeon is, as far as I am concerned, the absolute best. I really am happy with all the doctors I deal with at MGH, I so wish it was close enough for me to have my PCP there but both the main hospital in Boston and their satellite facilities are a minimum of an hour away and you have to allow more time for traffic. I do love my surgeon’s humor too. When I asked if I could go to Bermuda despite it being out of the country he said only if I took him. ;-). He has only been there two times, both very quick times there to harvest organs. He is head of the kidney transplant group at MGH but does liver too and from my recovery I would have to say he’s pretty darned good at livers.
JK

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@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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@rosemarya Yep, they really are good. Venk, my son in law as of tomorrow, just left to pick up takeout pizzas. I am not generally a pizza person but for some reason I’ve been craving it. I will have one slice and a salad. He knows we have put a lot of effort into tomorrow so he really did want to take us out but sitting at a table for any length of time in a restaurant would not be comfortable for me.
I do think the pain is finally easing a bit. I’m not sure if I just have it under better control with the regimen I am on now, or if really is less. Hopefully it really is less. I plan to get off the narcotics immediately after my daughter’s reception in two weeks so I can get back to having my independence and driving.
I am on dilaudid and tramadol. Have any of you had experience with those and if so did you have to ween off of them?
JK

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@IWantToBelieve

@davidgenbarnes - So great to hear from you, and better yet to hear that, although not totally healed, you are feeling much better. What a blessing to feel good enough to be able to become active in a church community - a bonus for others and you. Have a wonderful Thanksgiving!

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@contentandwell I'm sure he is good with liver transplants - he just needs to learn the Mercedes incision!

Teresa

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