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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 | Jul 6, 2017
In reply to @hopeful33250 "@contentandwell That is interesting, JK. Have you asked your transplant team about that possibility? Teresa" + (show)
@hopeful33250

@contentandwell That is interesting, JK. Have you asked your transplant team about that possibility? Teresa

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@rosemarya Gotcha. I never even thought of those because I have never used them. I hate taking as many prescriptions as I do.
JK

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 6, 2017
In reply to @hopeful33250 "@contentandwell That is interesting, JK. Have you asked your transplant team about that possibility? Teresa" + (show)
@hopeful33250

@contentandwell That is interesting, JK. Have you asked your transplant team about that possibility? Teresa

Jump to this post

@contentandwell, I'm sorry for the confusion. I was referring to products like Tylenol PM, Tylenol sinus. Tylenol flu etc.
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 6, 2017
In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)
@contentandwell

@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications I could and not take if it was a fungus. They told me that but did not mention any possibility of it being weakened nails from the medications. I want to ask them about using lamosil also, so I will call or ask on the portal about those two things.
This is never an issue I would have thought I would be discussing on this forum but I probably brought it up wondering if anyone else had a problem from the typical immunosuppressants. Thanks for the feedback to all. I guess I will ask but then if they are not sure I will continue with the treatment. I have already paid for it up front.
The bigger issue now is despite my drinking massive amounts of water my creatinine continues to go up. On Monday it was up to 1.78. I am sure I will be getting a call from MGH tomorrow. They cannot possibly want me to drink even more water -- I am close to 100 oz a day now! I find the days I go to the pool the easiest to get all of that water in. I do one of my 3.5 cup water bottles while in the water, refill it and do a second and then drink more in the evening to finish off the large requirement -- glug...glug...glug.
JK

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@2011panc, Thank you for sharing this memorable experience! I think it is a marvelous example of how much we can delight in the 'simple' moments that occur - after (and sometimes during) our l-o-n-g and difficult journey. When I read your post I was standing in line at the grocery checkout. You put a smile on my face:-) In fact you might say that I let out a little laugh. You have exceeded your goal by sharing this, in my opinion.
It is good to hear your voice. I hope that you are feeling well.
Blessings to you, too.
Rosemary

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JK | @contentandwell | Jul 6, 2017

@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235 at one point!
JK

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14 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 6, 2017

@contentandwell Hope so - but remember there are a lot of emotional reasons for eating - not all of those can be addressed with logic. Give it your best try if you feel led to. Teresa

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 6, 2017
In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)
@contentandwell

@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications I could and not take if it was a fungus. They told me that but did not mention any possibility of it being weakened nails from the medications. I want to ask them about using lamosil also, so I will call or ask on the portal about those two things.
This is never an issue I would have thought I would be discussing on this forum but I probably brought it up wondering if anyone else had a problem from the typical immunosuppressants. Thanks for the feedback to all. I guess I will ask but then if they are not sure I will continue with the treatment. I have already paid for it up front.
The bigger issue now is despite my drinking massive amounts of water my creatinine continues to go up. On Monday it was up to 1.78. I am sure I will be getting a call from MGH tomorrow. They cannot possibly want me to drink even more water -- I am close to 100 oz a day now! I find the days I go to the pool the easiest to get all of that water in. I do one of my 3.5 cup water bottles while in the water, refill it and do a second and then drink more in the evening to finish off the large requirement -- glug...glug...glug.
JK

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@contentandwell Let's hope it doesn't come to that! Teresa

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 6, 2017
In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)
@contentandwell

@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications I could and not take if it was a fungus. They told me that but did not mention any possibility of it being weakened nails from the medications. I want to ask them about using lamosil also, so I will call or ask on the portal about those two things.
This is never an issue I would have thought I would be discussing on this forum but I probably brought it up wondering if anyone else had a problem from the typical immunosuppressants. Thanks for the feedback to all. I guess I will ask but then if they are not sure I will continue with the treatment. I have already paid for it up front.
The bigger issue now is despite my drinking massive amounts of water my creatinine continues to go up. On Monday it was up to 1.78. I am sure I will be getting a call from MGH tomorrow. They cannot possibly want me to drink even more water -- I am close to 100 oz a day now! I find the days I go to the pool the easiest to get all of that water in. I do one of my 3.5 cup water bottles while in the water, refill it and do a second and then drink more in the evening to finish off the large requirement -- glug...glug...glug.
JK

Jump to this post

@contentandwell This is another "double-like." Teresa

REPLY
JK | @contentandwell | Jul 6, 2017
In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)
@contentandwell

@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications I could and not take if it was a fungus. They told me that but did not mention any possibility of it being weakened nails from the medications. I want to ask them about using lamosil also, so I will call or ask on the portal about those two things.
This is never an issue I would have thought I would be discussing on this forum but I probably brought it up wondering if anyone else had a problem from the typical immunosuppressants. Thanks for the feedback to all. I guess I will ask but then if they are not sure I will continue with the treatment. I have already paid for it up front.
The bigger issue now is despite my drinking massive amounts of water my creatinine continues to go up. On Monday it was up to 1.78. I am sure I will be getting a call from MGH tomorrow. They cannot possibly want me to drink even more water -- I am close to 100 oz a day now! I find the days I go to the pool the easiest to get all of that water in. I do one of my 3.5 cup water bottles while in the water, refill it and do a second and then drink more in the evening to finish off the large requirement -- glug...glug...glug.
JK

Jump to this post

@2011panc That is funny about drinking vs drinking water. I think most of us do not drink enough water so i would not be at all surprised to your doctor's reaction. I will always miss my wine with dinner and I kick myself because my husband and son would often on a birthday or Christmas give me a really nice wine, more costly than I would purchase, and of course I stored those away in our wine fridge. Then I was no longer able to drink! So now if something is special I say USE IT WHILE YOU CAN.
JK

REPLY
JK | @contentandwell | Jul 6, 2017
In reply to @contentandwell "@hopeful33250 @lcamino I am still a bit skeptical about all of this wondering if the drugs..." + (show)
@contentandwell

@hopeful33250 @lcamino I am still a bit skeptical about all of this wondering if the drugs may have just weakened my toenails causing them to detach since another detached and the first podiatrist said that it definitely was not fungal. I didn't think to ask the second one. This one has now detached also. I never knew when it detached completely but it looked odd and sure enough I found the nail on my bedroom floor! I will continue with the treatment "just in case".
JK

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@rosemarya That's pretty much what she did on my little toe when I had my last pedicure but it would be pretty noticeable I think on my big toe.I have a pedicure appointment next week so we shall see then. We leave to go away on Friday or Saturday, to Maine joined by our son and daughter and her fiance and his "girlfriend". Dying to finally meet her! She texts me so much I feel like I already know her.
JK

REPLY
JK | @contentandwell | Jul 6, 2017
In reply to @hopeful33250 "@contentandwell That is interesting, JK. Have you asked your transplant team about that possibility? Teresa" + (show)
@hopeful33250

@contentandwell That is interesting, JK. Have you asked your transplant team about that possibility? Teresa

Jump to this post

@rosemarya Rosemary, I am not even familiar with the combination kind. I just know 2000 max per day. I also do not take much, probably an average of once a week for muscle pains in my legs. I used to have terrible migraines and although the pain relievers didn't help a whole lot they did help a tiny bit. I am so glad I do not have those now. Thank you menopause.
JK

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