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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 | Jul 5, 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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@lcamino, when I go the pool I always bring one of my water bottles. I always make myself drink the whole bottle before I get out of the pool and then i refill it, so between those two I am well on my way to drink enough.
I have a cool bottle that my future son-in-law gave me. It has a citrus juicer on the bottom so you squeeze a lime or lemon into it and then the water. I find that goes down much easier and negligible calories. I also drink unsweetened iced tea. There are some really nice tasting herbals now so they have no calories and also no caffeine.
My husband mentioned to our son how much I am drinking and it turns out that my son has a HUGE water jug that he fills multiple times a day, he probably drinks as much as you do. He is very, very active so I am sure his body disperses a lot.
JK

REPLY
JK | @contentandwell | Jul 5, 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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@lcamino, I am not really terribly worried, I just want it gone, and I am curious about what it is. I had a manicure today and I asked my nail tech what she thought about it. I emailed a picture of it to her when it first started looking ugly. She said that right away she thought it was strange that it looked so bad so quickly, that fungus usually progresses more slowly than that. I reminded her that being on immunosuppressants maybe it had no resistance so got worse more quickly. She also did not think it looked like fungus she has seen, and in her business she has seen many. It actually is not as bad looking at all now, with the nail gone, as it was before. Of course if I get a pedicure there is no place to put nail polish on that toe. I will just put a band aid on it.
JK

REPLY
JK | @contentandwell | Jul 5, 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

@lcamino, it doesn't hurt to ask. At my liver transplant center they said it was fine, in fact they recommended it.
JK

REPLY
JK | @contentandwell | Jul 5, 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, Lynn, no, just liver got a transplant. My dear surgeon is the "Surgical Director of the Kidney Transplant Program" at MGH too, but hopefully I will not need him for that.
JK

REPLY
JK | @contentandwell | Jul 5, 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 Rosemary, I really do not generally care for the aftertaste of artificial sweeteners but I can tolerate it in certain things like tonic water which I had been drinking regularly -- 8 to 10 ounces a day, and I like artificially sweetened hard candy. My PCP is dead-set against artificial sweeteners, and I did read somewhere that they can be tough on your liver! He said he would rather see me have a little bit of sugar than artificially sweetened things. I really do like some of those candies though, particularly the cinnamon ones.
JK

REPLY
JK | @contentandwell | Jul 5, 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 Is tylenol the only pain reliever you can take now too? It is for me, up to 2000 mg a day. So odd, that tylenol can cause liver problems but then you can use it and not aspirin or ibuprofen. Tylenol does little but I do use it some nights at bedtime if my legs are killing me from exercise.
JK

REPLY
JK | @contentandwell | Jul 5, 2017

@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

REPLY
11 replies
JK | @contentandwell | Jul 5, 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, the strange thing for me is that no matter how long it may have been from when I drank the bulk of the water I get up at night a lot. I tried getting as much water in early on thinking that would help but it didn't. My body holds on the water and gets me up just about once an hour.
JK

REPLY
JK | @contentandwell | Jul 5, 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

@The up side of drinking water and not alcohol when we go out is that since nothing is spent on wine for me I feel free to order a more expensive menu item! I would love to order lobster but rarely do due it's high sodium content.
JK

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 6, 2017

@contentandwell In that case, it might be worth a try. In situations like that (where I'm thinking about giving advice), I usually just "drop a thought" to see how it settles - if there is no adverse reaction then I continue on - I call it a "small-step" approach. Teresa

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