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.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | 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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@lcamino, You are smart to be cautious. I think that you are dealing with bigger issues now than hair thinning! Do you know if thinning hair is a symptom of poor kidney function?
I was limited in taking Tylenol, too. Now it is still limited, though I can use it if needed as long as I stay under the daily recommended dose. That is only because my liver is doing well.
Rosemary

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | 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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@contentandwell, I get the same feeling when I wake up at 2 AM with a rising temperature and uncontrolled shivering. Do I go to ER...at 2 AM??? Yikes. Yes, Hubby and I go...it's just not worth taking any chances.
Don't be so hard on yourself for taking care of you 🙂
Hugs,
Rosemary

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 5, 2017

@contentandwell I agree with Rosemary - you have a lot invested in your health - take all the precautions you need to in order to take care of yourself. Teresa

REPLY
IWantToBelieve | @IWantToBelieve | 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

Jump to this post

@contentandwell - You are worth every cent!

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 - When we go through life's trials they change us, usually no avoiding it. I believe it is our goal to try to make sure those changes are for the better. What I have learned is that some people will adjust to me changing and others won't. Sometimes that hat can hurt but I can only share my experiences, not make people understand what I have gone through and accept my new perspectives on life. Honestly, even if someone went through the exact same experiences as I have does not mean they would come out of the experiences with the same viewpoint as myself because we are all so different. It is what makes life interesting...and sometimes frustrating.

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

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@hopeful33250 - It helps that the medicine makes me thirsty but the side effects have lessened and I still drink a lot because it has become a habit. When I first started the study med I was drinking 1 1 /2 gallons so now my gallon is thirst and habit. Keep in mind that I used to drink 3-4 glasses of liquid a day so if I can learn to do this anyone can. Mind you, I would not go to my extreme unless really necessary because your sleep is very interrupted, road trips become long (lots of stops), can't get through a movie at a theatre without running to the bathroom etc. so it does impact your daily life to drink that much.

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

Jump to this post

@rosemarya - No idea if kidney failure causes thinning hair. I never thought of it until this discussion. I have always had fine hair and knew thinning hair was a part of aging for some so I never really questioned it. A very quick search tells me that I could have nail and hair issues if I was on dialysis so that means my kidneys were not doing their job/keeping everything balanced and filtering waste. Although my kidney function is still poor they are working enough that my labs, other than poor kidney function, are fine (mineral levels good etc.). The search also said age, stress, and hereditary can cause thinning hair and I think at this moment all of the three probably apply to me ; - )

REPLY
IWantToBelieve | @IWantToBelieve | 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

Jump to this post

@rosemarya and @contentandwell - Oh I"m learning so much from you guys and appreciate all I can take in now before I'm overwhelmed with the entire transplant process. Thank you so much for sharing!

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | 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

Rosemary, I'm drinking out of my purple Mayo water bottle right now. It is my favorite too and helps me measure my water intake. I have to drink at least 2L a day to prevent further kidney stones.

Lynn, JK, Rosemary, Teresa - it's great to have "drinking" buddies.

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 Teresa, you are right of course, I know that from my own personal experience.
I would hope to convince my stepson that it is in his best interest. He is not a warm and fuzzy person but he seems to enjoy conversing with me and I think he respects my opinions (except politically). I think at gathering such as I mentioned I spend more time talking to him than my husband does, which is why I think maybe, just maybe, he would listen to me and consider what I say.
JK

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