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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 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 A gallon of water is pretty amazing - Teresa

REPLY
IWantToBelieve | @IWantToBelieve | Jul 5, 2017
In reply to @hopeful33250 "@contentandwell thanks, I'll look into those websites. While I've never had a transplant, I have very..." + (show)
@hopeful33250

@contentandwell thanks, I'll look into those websites. While I've never had a transplant, I have very fair-skin and look for good ways to protect it from sun. I also get rashes from the chlorine in the pool, I go to a very nice 24/7 health club that always looks very clean, so it must be the chlorinated water that gets to me. Have you found any help for that? Thanks, Teresa

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@contentandwell - Being safe is always better than being sorry. Don't ever doubt your ability to advocate for yourself.

REPLY
IWantToBelieve | @IWantToBelieve | 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

@contentandwell - Please keep us informed about your creatinine. I'm embarrassed for asking this but you had a liver transplant but not a kidney too, right? I will pray they will be able to put a stop to the creatinine rising. As for the water, not that this is helpful, I have you beat. With the study I'm in I'm supposed to drink 64 oz. a day but the medicine makes me thirsty, and I've gotten used to drinking, so I drink about a gallon of water a day (128 ounces - 16 cups). I take water to bed and drink 18 ounces throughout the night before I even start my day. My problem is that I get tired of water sometimes so I drink pop and lemonade and that is not good when you are attempting to lose weight.

REPLY
IWantToBelieve | @IWantToBelieve | 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

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My hair dresser has suggested biotin for thin hair (something I have always had but worse as I get older - and maybe related to poor kidney function but I doubt it. Instead I found another hairstyle that works for me because I was afraid to use the biotin with poor kidney function, although I never asked my nephrologist if I could take it. I suspect he would say no because he is very cautious and doesn't even want me taking Tylenol unless absolutely necessary.

REPLY
IWantToBelieve | @IWantToBelieve | 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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@contentandwell - If it's any consolation - I am learning from your issues. I hope, no matter what the problem, it resolves itself so you can stop worrying.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 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

@contentandwell Please keep in touch with us and let us know how you are doing. I admire all the water you are drinking, good for you! Teresa

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 5, 2017
In reply to @hopeful33250 "@contentandwell thanks, I'll look into those websites. While I've never had a transplant, I have very..." + (show)
@hopeful33250

@contentandwell thanks, I'll look into those websites. While I've never had a transplant, I have very fair-skin and look for good ways to protect it from sun. I also get rashes from the chlorine in the pool, I go to a very nice 24/7 health club that always looks very clean, so it must be the chlorinated water that gets to me. Have you found any help for that? Thanks, Teresa

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@contentandwell I understand where you are coming from. However folks can only change when they are convinced that it is in their best interests. It does make us feel helpless, though, doesn't it? Teresa

REPLY
JK | @contentandwell | Jul 5, 2017
In reply to @hopeful33250 "@contentandwell thanks, I'll look into those websites. While I've never had a transplant, I have very..." + (show)
@hopeful33250

@contentandwell thanks, I'll look into those websites. While I've never had a transplant, I have very fair-skin and look for good ways to protect it from sun. I also get rashes from the chlorine in the pool, I go to a very nice 24/7 health club that always looks very clean, so it must be the chlorinated water that gets to me. Have you found any help for that? Thanks, Teresa

Jump to this post

@hopeful33250 Thanks Teresa. One thing I know for sure is this experience changed me forever. One of things it has done is to make me want to shake people who are very overweight. They, like I was, just do not realize the harm they are potentially doing. I know my cirrhosis came from fatty liver. Not every overweight person develops these problems but I hate to see people putting themselves at risk. We went to a bbq at my stepson's on Sunday and he has gotten very overweight. I would love to sit him down and talk to him about his weight but my husband would not be happy with me if I did that.
It's changed me a lot on a more personal level also.
JK

REPLY
JK | @contentandwell | Jul 5, 2017
In reply to @rosemarya "@contentandwell, I believe you did exactly what any good patient would have done by asking about..." + (show)
@rosemarya

@contentandwell, I believe you did exactly what any good patient would have done by asking about the medications. I also do this whenever in question. If my issue is directly related to the transplanted organs I go thru the portal to my nurse. She either responds, or she consults with a physician before responding. I have also felt the need on occasion to go beyond my local pharmacy to my specialty pharmacy at Mayo for advice. I feel that they have more experience with these immunosuppressant drugs and our condition. I have not found my locals to be out of compliance, but the peace of mind is worth it to me! Plus I am provided with a more detailed answer to my question. It is so-o-o hard to decide, but I prefer to err on the side of caution!
I had some minor athletes foot rash when I was in for my annual in April. Dermatologist said it is ok to use some of the over counter topical creams. He gave me some names, but I would need to go look them up. Recognizing that we are all under different caregivers, and have different situations, I believe that you are best to go to your provider.
JK, as far as the toenail thing - my husband and I have been surprised at the many peculiar things that we have ended up talking about during and since transplant. Often find ourselves laughing about it later.

I can understand your concern over the creatinine numbers. It is wonderful that the team at MGB will be in contact with you about it. I know that you will be happy to hear from them. Were your creatinine numbers stable before you changed your immunosuppressant meds? Were they 'normal'?
Rosemary

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@rosemarya Thanks Rosemary. I have this feeling inside of me that I may be spending $499 that did not needed to be spent but I just do not want to chance not taking care of it if it is fungus.
JK

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 4, 2017
In reply to @hopeful33250 "@contentandwell thanks, I'll look into those websites. While I've never had a transplant, I have very..." + (show)
@hopeful33250

@contentandwell thanks, I'll look into those websites. While I've never had a transplant, I have very fair-skin and look for good ways to protect it from sun. I also get rashes from the chlorine in the pool, I go to a very nice 24/7 health club that always looks very clean, so it must be the chlorinated water that gets to me. Have you found any help for that? Thanks, Teresa

Jump to this post

@rosemarya Sometimes I just wish I could "double-like" some comments - this would be one of them! Teresa

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