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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 @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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@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

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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

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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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@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

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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.

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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.

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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

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@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 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

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

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

@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

Jump to this post

@hopeful33250 - I've often wanted to double like some comments too!

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | 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

I have been a real big water drinker since my kidney transplant. I can still remember when I was being tapered off the IV fluids in the days after my transplant. And I still can remember being told that I was going to be disconnected - and it was "my job" to keep my new kidney hydrated. I feared that new responsibility! This was compounded for me because prior to my transplant surgery, while experiencing both edema and ascites, and dialysis, I had to limit my fluid intake. But I had lots of support and encouragement, plus the fact that my hospital discharge depended on it.

My husband bought me a Mayo Clinic water bottle when I was released from the hospital. And I take it everywhere, even today. It is my favorite: no leak, handy carry loop, fits in my car cup holder. It is extra special because it is blue with the 'Mayo' logo - and best of all - I have customized it with a green Donate Life wrist band. Besides water, it contains so many memories 🙂

I've recently been told to drink 3L daily (96 0z.) I keep a measured pitcher in refrigerator so I can monitor my intake. With this conscious effort to consistently drink that amount, it, I do believe that my appetite for snacking is diminishing.

Try a little crystal lite type flavoring in your water for a varied taste. Also try a lemon or lime slice - makes it look special and adds a little taste. Remember that it is okay to treat yourself to a soda or lemonade, too. I've also learned to drink diluted unsweet ice tea. But my favorite still remains water.
Rosemary

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