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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.

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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Colleen, Lynn, Rosemary, JK. Ok - you've all inspired me - I'm going to get out my Mayo water bottle and see how I do today - if you hear that a woman in SE Michigan floated down one of the Great Lakes - that will be me. 🙂 Teresa

REPLY
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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Teresa and anyone else reading this:
It is good to be aware of healthy hydration, especially during the hot weather and while you are involved in strenuous activities that cause you to sweat. But also keep in mind that we do not want to engage anyone in a "drinking contest"!
Some individuals will be advised to drink more or less water depending on individual health conditions.

Here is what Mayo Clinic has to say about how much water we should drink
http://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/water/art-20044256
Rosemary

REPLY
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

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@contentandwell, Yes, tylenol is the only pain reliever that I can take. I feel fortunate because I do not have a need for it very often. When I do take it, I do so very sparingly. So, I do not even know the approved daily amount in mgs. - just that I should not exceed daily recommendation.
Also, only the plain regular kind is approved, and not the combination treatment kind.
Rosemary

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | 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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My girlfriend has a toenail missing, and when she treats herself to a pedicure, she gets her polish on that too!

REPLY
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

@rosemarya Thanks for the Mayo guidelines - they gave a good explanation about hydration. I've never been a person to sweat unless I am out in the sun - indoor exercise (like a gym) doesn't even make me sweat - but I'm still planning on increasing my fluid intake and see how it goes. Teresa

REPLY
JK | @contentandwell | Jul 6, 2017

@hopeful33250 That's a good approach. The last couple of years we have seen a lot of him and his family in Maine at the lake because he was pretty much telecommuting but now he has joined a law practice in the town where he lives so he will be there less. When our paths do manage to cross there though I may try your approach, it's just how to start it off that will be tough. I brought it up to my husband today during our drive to MA to go to a funeral and he didn't sound totally opposed but he figures people will do what they will do in regard to that. I think in my position, having had problems that I am sure stemmed from my weight, I might be listened to more than just anybody. He is a very smart man, PhD in computer sciences, and then when he got tired of software he went back to school to become a lawyer! I am inclined to think that smart people usually do listen more.
JK

REPLY
2 replies
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

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@hopeful33250 and if you hear a loud, blood curdling scream coming from the east it will be me if MGH tells me to drink even more water because of my creatinine going up.
JK

REPLY
2011panc | @2011panc | 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

I just wanted to say a bit about the amount of water we are asked to drink. On one of my first rechecks following transplant the doctor asked how much I was drinking and I replied, "not enough." He just chuckled, shook his head a bit and said something like 'most of us don't' and went on with his questions. A few questions later he asked how much water I was drinking. I was confused because I had already answered, Ii thought. Then I realized that the first question was about alcohol, which did not even register with me because I have never drunk much. I have noticed that now they have added the word "alcohol" to the first question. I think I enjoy this memory so much because of the lack of enjoyment overall for me those first months. If this made you smile, I have reached my goal. Blessings to all!

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

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

Jump to this post

@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

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