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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
Rosemary, Volunteer Mentor | @rosemarya | Oct 27, 2018
In reply to @jodeej "@cmael @rosemarya @contentandwell we've noticed that my husband's hair has thinned since his surgery but he..." + (show)
@jodeej

@cmael @rosemarya @contentandwell we've noticed that my husband's hair has thinned since his surgery but he has said more than once that his nails seem stronger. I'll have to see if he wants to try biotin and maybe ask about it when we go for his check-up in a couple weeks.
JoDee

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JoDee, We are all in this together, aren't we! I sure wish this site had been available to me after my transplant.

This is definitely something to bring up at the upcoming checkup. You will learn that the transplant team loves questions so that they know what might be needed to help patient stay healthy and active. I always have a list, and most are pretty easily addressed by the NP before I even see the doctor.

As a side note, my PCP does not answer questions related to my transplant matters. He likes to tell me that I will have to "talk to the transplant people about that'. He is very good at monitoring everything else, and he is the one who first suspected that I had a liver problem. He referred me to the GI so I could get the correct diagnosis and treatment. He also works me into his appointment schedule right away if I have fever, or questionable symptoms. My friends tease me that am 'special' and get a Free Pass into the doctor's office while they have to wait for an opening:-)

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2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 27, 2018
In reply to @rosemarya "JoDee, We are all in this together, aren't we! I sure wish this site had been..." + (show)
@rosemarya

JoDee, We are all in this together, aren't we! I sure wish this site had been available to me after my transplant.

This is definitely something to bring up at the upcoming checkup. You will learn that the transplant team loves questions so that they know what might be needed to help patient stay healthy and active. I always have a list, and most are pretty easily addressed by the NP before I even see the doctor.

As a side note, my PCP does not answer questions related to my transplant matters. He likes to tell me that I will have to "talk to the transplant people about that'. He is very good at monitoring everything else, and he is the one who first suspected that I had a liver problem. He referred me to the GI so I could get the correct diagnosis and treatment. He also works me into his appointment schedule right away if I have fever, or questionable symptoms. My friends tease me that am 'special' and get a Free Pass into the doctor's office while they have to wait for an opening:-)

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@rosemarya As well he should work you into his schedule right away. Thankfully, even tho he won't answer your transplant concerns, he understands your system is compromised. I'll be forever grateful to my nephrologist who took the extra steps to help me.
Ginger

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1 reply
cmael | @cmael | Oct 27, 2018
In reply to @rosemarya "I want to add this to my original reply about hair loss. In addition to my..." + (show)
@rosemarya

I want to add this to my original reply about hair loss.
In addition to my hair thinning and falling out, my main concern after transplant was my fingernails. They were growing oddly, they were discolored, and they were in the process of regrowing new ones to replace the old ones and there was a raggedy ugly ridge where they met. When the fingernails were regrown completely, I stopped taking the biotin.

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@contentandwell @rosemarya

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cmael | @cmael | Oct 27, 2018

Those green Mayo bags are really nice, aren’t they? I use my green water bottle all the time.
My nails also have the ridges running side to side. They’re almost grown out and the nails seem to be much stronger, but not my hair. The fallout seems to have slowed at least.👏😊

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1 reply
sholman459 | @sholman459 | Oct 27, 2018

My wife received a liver in Jan. of this year. Since then she has had to have stints put in to expand her bile duct. She is itching from head to toe and it's driving her insane(me also!). She takes frequent baths daily with baking soda and takes benadreyl which don't seem to help. Do others suffer from this and if so is there any relief for this? HELP!!

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5 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 27, 2018
In reply to @sholman459 "My wife received a liver in Jan. of this year. Since then she has had to..." + (show)
@sholman459

My wife received a liver in Jan. of this year. Since then she has had to have stints put in to expand her bile duct. She is itching from head to toe and it's driving her insane(me also!). She takes frequent baths daily with baking soda and takes benadreyl which don't seem to help. Do others suffer from this and if so is there any relief for this? HELP!!

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@sholman459, Welcome to Connect. I am happy to meet you.

Prior to my transplant for PSC (Primary Sclerosing Cholangitis) a disease that affected to bile ducts, I suffered with severe itching for a period of time. If my memory serves me correctly, my itching was a response to bile in my system. I was not yet a patient at a transplant patient. My local GI prescribed a RX named Cholestyramine that offered some relief. Since you have mentioned that your wife has had stints inserted in her bile ducts, I wonder if this is something that is worth asking about.

Have you discussed this with her transplant doctor? Is this an ongoing problem? or Has it just recently started?

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1 reply
JK | @contentandwell | Oct 27, 2018
In reply to @jodeej "@cmael @rosemarya @contentandwell we've noticed that my husband's hair has thinned since his surgery but he..." + (show)
@jodeej

@cmael @rosemarya @contentandwell we've noticed that my husband's hair has thinned since his surgery but he has said more than once that his nails seem stronger. I'll have to see if he wants to try biotin and maybe ask about it when we go for his check-up in a couple weeks.
JoDee

Jump to this post

@jodeej that's interesting that his nails seem stronger. I would think the two go hand-in-hand. My nails have always been weak though, not just after my transplant.
It seems that biotin has been recommended to many of us so more than likely they will say yes. I do always ask though. Sometimes I think the NP gets annoyed that I ask things like that, but too bad. From what I have read in her background info she is quite bright but to me she is the weak link in my transplant care, and everything goes through her.
JK

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1 reply
JK | @contentandwell | Oct 27, 2018
In reply to @rosemarya "JoDee, We are all in this together, aren't we! I sure wish this site had been..." + (show)
@rosemarya

JoDee, We are all in this together, aren't we! I sure wish this site had been available to me after my transplant.

This is definitely something to bring up at the upcoming checkup. You will learn that the transplant team loves questions so that they know what might be needed to help patient stay healthy and active. I always have a list, and most are pretty easily addressed by the NP before I even see the doctor.

As a side note, my PCP does not answer questions related to my transplant matters. He likes to tell me that I will have to "talk to the transplant people about that'. He is very good at monitoring everything else, and he is the one who first suspected that I had a liver problem. He referred me to the GI so I could get the correct diagnosis and treatment. He also works me into his appointment schedule right away if I have fever, or questionable symptoms. My friends tease me that am 'special' and get a Free Pass into the doctor's office while they have to wait for an opening:-)

Jump to this post

@rosemarya My PCP also has a "hands off" approach to anything that involves my transplant, and my transplant team has that same philosophy when it comes to anything that is not transplant related. I think they don't want to step on the toes of the PCPs perhaps.
JK

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 27, 2018
In reply to @cmael "Those green Mayo bags are really nice, aren’t they? I use my green water bottle all..." + (show)
@cmael

Those green Mayo bags are really nice, aren’t they? I use my green water bottle all the time.
My nails also have the ridges running side to side. They’re almost grown out and the nails seem to be much stronger, but not my hair. The fallout seems to have slowed at least.👏😊

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Cheers for any improvement!
I don't know whether or not I shared this with you, but here is some good information as you continue to get active in the post transplant life: Self Care Tips for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed/self-care-tips-for-transplant-patients/

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JK | @contentandwell | Oct 27, 2018
In reply to @sholman459 "My wife received a liver in Jan. of this year. Since then she has had to..." + (show)
@sholman459

My wife received a liver in Jan. of this year. Since then she has had to have stints put in to expand her bile duct. She is itching from head to toe and it's driving her insane(me also!). She takes frequent baths daily with baking soda and takes benadreyl which don't seem to help. Do others suffer from this and if so is there any relief for this? HELP!!

Jump to this post

@sholman459 I know nothing about itching and bile ducts, but I just wanted to welcome you to Connect and extend congratulations for your wife's transplant, it's such a miraculous event. I hope you and she can solve the itching problem and that then she will be doing well in all areas.
JK

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