1. < Transplants
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 | Jul 7, 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 - WOW! You are getting up more than I do! I'm usually up every 2 hours and much of that is due to the medicine. I take 3 pills in the morning and one 8 hours later vs. at dinner time so the idea is that time frame will help me sleep better. But, I still drink a lot (habit and thirsty) so I'm still up every 2 hours. I think the interrupted sleep really impacts my energy level during the day. Do you feel that way? It's a good day if I don't take a 30 minute to 1 hour nap. The past month I forgot my afternoon meds twice and those evenings I slept so much more soundly and woke up every 3 or 4 hours which made such a big difference. Because my sleep is interrupted I find I need to sleep longer which, during the school year, is not possible so that leads to more naps. In the summer I sleep longer so I seem to not nap as much. I'm not sure how you are functioning during the day. I'll stop feeling sorry for myself now.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 7, 2017
In reply to @contentandwell "@rosemarya @hopeful33250 @lcamino Thanks to all of you for all of your encouraging words. This really..." + (show)
@contentandwell

@rosemarya @hopeful33250 @lcamino Thanks to all of you for all of your encouraging words. This really is a nice haven to share the good and the bad. Thankfully it seems like most of us are doing pretty well now - Lynn you are like I was, going strong with a transplant in the future. When I have time to read the posts on MAC/MAI I feel so bad for the people suffering from that, it sounds horrible.
I really do feel so fortunate to be where I am at. I went to a wake today for the last aunt from my mother's generation. Of course I saw many relatives and every one thought I looked great, which compared to how I looked before I guess I do. I never realized it at the time that although I never had a yellow cast to my skin I did look pretty pale and colorless. Of course a lot of their comments were brought on too by the fact that I have lost much weight too.
JK

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@lcamino Thanks for sharing your news regarding your appointment yesterday. I'm so pleased that you felt encouraged. As you said, It is good for the psyche. Please keep sharing with us. We are so glad that you are sharing with this discussion group - we all learn from each other and you are contributing to our learning as well. Teresa

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IWantToBelieve | @IWantToBelieve | Jul 7, 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 - Well I have never been an alcohol drinker because I have known about my kidney disease since I was 20 so I have intentionally avoided it. But I will say that even drinking water versus pop can save a lot of money. I prefer a Coke but I'm to avoid caffeine (bad for PKD) and water is more thirst quenching. I did not know lobster is high in sodium, not that it is something one orders in Indiana. Is it high in sodium because of the way it is prepared or because lobsters live in salt water? I certainly do partake when I visit family on the east coast because I love it! Incidentally, yesterday at Rochester Mayo there was a street festival (First on Thursday) and I had a nice break walking the streets, perusing local artists (I bought a neat pair of earrings) and had a lobster roll. It wasn't like one from the coast but it was darn good considering I was in Minnesota! I continue to be amazed at the quality of restaurants in Rochester for being in the middle of nowhere. It's a happening city!

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IWantToBelieve | @IWantToBelieve | Jul 7, 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

@hopeful33250 - we are almost neighbors!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 7, 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

@lcamino How great! I did not know that. I'm in a northwest suburb of Detroit!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 7, 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

@lcamino I'm glad to hear you say that about Rochester, MN. I was there in May with my daughter for meetings. We were so impressed with the city. The restaurants and shopping were great. When we were coming from the airport to the hotel the driver was saying that the airport is going to increase their flights into Rochester later this year to accommodate all of Mayo's patients. That certainly says something about the clinic. Teresa

REPLY
IWantToBelieve | @IWantToBelieve | Jul 7, 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, @hopeful33250, @contentandwell, @colleenyoung, @2011panc, and anyone I've missed. This is a prime example why I turn to the Mayo website with medical questions. Clear, concise, and thorough and if I still have questions I go to my doctor/s since they know my situation. Many times my question is answered and I am calmed and sometimes it gives me good questions for my doctor/s.

REPLY
IWantToBelieve | @IWantToBelieve | Jul 7, 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

@hopeful22350 - I have really noticed, even though I drink a lot, that when on my study medicine I have to drink a lot BEFORE I exercise, WHILE I exercise (especially when biking outside), and afterwards (watermelon is my favorite after a bike ride). Even if it is cool (65 degrees in early morning and I'm wearing shorts and a t-shirt) I seem to fizzle exercising outside and if I don't push the fluids, even when I don't feel thirsty. I've been told that if you can't urinate after a bike ride than you didn't drink enough. That is not applicable to me now with the med I take so I use the second "measurement" which is that urine should be colorless to light yellow as a indicator of being properly hydrated. I guess what I'm saying is that there are several ways to ensure that you are well hydrated and to be extra vigilant when exercising outside, especially in the sun and heat.

Sorry but kidney health is all about blood tests and urine tests so it's what I know.

REPLY
IWantToBelieve | @IWantToBelieve | Jul 7, 2017
In reply to @contentandwell "@hopeful33250 That's a good approach. The last couple of years we have seen a lot of..." + (show)
@contentandwell

@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

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@contentandwell - Smart people might be more open minded and listen more but that does not mean they will change. Speaking from experience, changing years of habits (not exercising, eating out or too much) is not a simple thing to do. It is possible but the person has to get to a place mentally and then have the time, desire, and community/family support to make the changes. I'm not saying try, you should, but as the saying goes, "You can lead a horse to water but you can't make it drink."

Good luck! I'm all for planting seeds!

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IWantToBelieve | @IWantToBelieve | Jul 7, 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 - Yes, it made me laugh! I would have answered the same way you did.

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