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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 28, 2018
In reply to @jeanne5009 "Ok itchy people...my scalp and lower back and butt are driving me crazy...Dr finally put me..." + (show)
@jeanne5009

Ok itchy people...my scalp and lower back and butt are driving me crazy...Dr finally put me on prednisone. Soon as it was done the little bumps and intense itch came back. Benadryl helps a little. I'm about to go to a dermatologist but want to make sure it's not liver related. Mostly fires up at night...anyone have a clue??

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Bring it up to your hepatologist on Tuesday. He/she should be able to tell you if the little bumps and itch are liver related.

REPLY
jeanne5009 | @jeanne5009 | Oct 28, 2018
In reply to @gaylea1 "@jeanne5009 yes the edema definitely affects my itching and I am pre transplant. I also have..." + (show)
@gaylea1

@jeanne5009 yes the edema definitely affects my itching and I am pre transplant. I also have all those tiny white bumps all over my feet, arms and legs. It does occur mostly at night. I have tried, benadryl and lotions and a certain medication but nothing seems to work.

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@gaylea1
Misery loves company...

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jeanne5009 | @jeanne5009 | Oct 28, 2018
In reply to @rosemarya "gaylea, My heart hurts for you. I had that severe itching, too. It was so awful..." + (show)
@rosemarya

gaylea, My heart hurts for you.

I had that severe itching, too. It was so awful that I was often on the verge of tears. There was not a doorway that was safe from my constant back scratching. Imagine the image of a big ole grizzly rubbing against a tree - That was me!
Sometimes a good soaking bath with Aveeno oatmeal bath oil helped briefly, but even that brief escape from itching was not worth the trouble to me, because it was an overwhelming task. I was fatigued, and my edema made movement difficult, and I was cold all the time. I never got to where I was scratching until it bled, though, I hear that that can happen.

Somewhere along the wait, the severe itch gradually diminished. I don't know why.
We are all different in our symptoms as we await our transplants.

Hugs to you and to anybody who is also experiencing these symptoms.

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@rosemarya @gaylea1
The image of a big ole grizzly has me rolling in laughter... going to try the laundry tip next...meanwhile I'll try not to be witchy...
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gaylea1 | @gaylea1 | Oct 28, 2018
In reply to @gingerw "@gaylea1 Could any of these help you remedy night itching? Change in temperature: when you first..." + (show)
@gingerw

@gaylea1 Could any of these help you remedy night itching? Change in temperature: when you first go to bed you snuggle into bending, but body temp changes thru the night, you get somewhat overheated and start itching. Any change in laundry soap or drying method: a new formula in soap, or change in machine/dryer sheet/fresh air vs dryer. Changeup in diet before bed: weather changing so you have a cuppa something warm, which makes you feel good at the onset but warms your internal temp up too much a bit later. Lotion has helped me.
Ginger

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@gingerw no I haven't changed any soap or detergents. I lie straight out to sleep but the itching starts as soon as I lay down. Any covers seem to make the itching worse. Even pyjamas touching my skin can start the itch. I wear nightgown to keep my legs free. I only drink water so it's not that. I am just out of options. I can't wait for the surgery!

REPLY
1 reply
gaylea1 | @gaylea1 | Oct 28, 2018
In reply to @contentandwell "@gaylea1 @gingerw Laundry detergent could definitely be the culprit. I changed once and my husband was..." + (show)
@contentandwell

@gaylea1 @gingerw Laundry detergent could definitely be the culprit. I changed once and my husband was terribly itchy from what I changed to. I had forgotten all about that. I only buy the ones that are unscented and for sensitive skin now.
JK

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@contentandwell I do use detergent for sensitive skin but even the sheets cause the itching. I quite often lie on top of them.

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2 replies
jeanne5009 | @jeanne5009 | Oct 28, 2018
In reply to @gaylea1 "@contentandwell I do use detergent for sensitive skin but even the sheets cause the itching. I..." + (show)
@gaylea1

@contentandwell I do use detergent for sensitive skin but even the sheets cause the itching. I quite often lie on top of them.

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@gaylea1 @rosemarya
I have bamboo sheets they are very light weight and havent bothered me.

REPLY
gaylea1 | @gaylea1 | Oct 28, 2018

@jeanne5009 where would I find these sheets? On line?

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3 replies
JK | @contentandwell | Oct 28, 2018
In reply to @gaylea1 "@contentandwell I do use detergent for sensitive skin but even the sheets cause the itching. I..." + (show)
@gaylea1

@contentandwell I do use detergent for sensitive skin but even the sheets cause the itching. I quite often lie on top of them.

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@gaylea1 I think we are out of suggestions probably. Hopefully after surgery the itching will go away. I don't recall hearing of that being a problem though, it was not for me.
jK

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jeanne5009 | @jeanne5009 | Oct 28, 2018
In reply to @gaylea1 "@jeanne5009 where would I find these sheets? On line?" + (show)
@gaylea1

@jeanne5009 where would I find these sheets? On line?

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AMAZON I think.

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jeanne5009 | @jeanne5009 | Oct 28, 2018
In reply to @gaylea1 "@jeanne5009 where would I find these sheets? On line?" + (show)
@gaylea1

@jeanne5009 where would I find these sheets? On line?

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@gaylea1
Cozy House got them thru Amazon

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