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.

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.

Jump to this post

@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

REPLY
gaylea1 | @gaylea1 | Oct 28, 2018

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

REPLY
3 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.

Jump to this post

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

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

Jump to this post

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

REPLY
2 replies
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

Jump to this post

@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
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.

Jump to this post

@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...
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.

Jump to this post

@gaylea1
Misery loves company...

REPLY
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??

Jump to this post

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
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 28, 2018
In reply to @2011panc "@sholman459 I have extreme itching following a pancreas transplant. I tried all kinds of folk and..." + (show)
@2011panc

@sholman459 I have extreme itching following a pancreas transplant. I tried all kinds of folk and medical suggestions with no relief. Finally I purchased a mesh exfoliating towel (found at Wal-Mart) and use it to scrub my entire body. Amazingly and thankfully that works for me. FYI, it is impossible to get lotion on the middle of your back where my itching was located.

Jump to this post

2011Panc, I am not itchy these days, but I bought one of those mesh towels after you shared once before. I really like it. Thanks.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 28, 2018
In reply to @jeanne5009 "@rosemarya YOU ARE a never ending source of knowledge. What did they operate on and was..." + (show)
@jeanne5009

@rosemarya
YOU ARE a never ending source of knowledge. What did they operate on and was it due to the sepsis? SEPSIS is very dangerous for transplant patients...or anyone for that matter. I have instructed my PCP to forward all my records to Mayo and to get me to Tampa...the closest transplant center ASAP if it's serious. Mayo is 4 hrs away or I would go there.
HOW long did it take to recover from that little side show? Lol
I go to my hepatologist Tuesday so I will get a 6 month update then.

Jump to this post

jeanne5009, I hope you will have an informative and a positive appointment this week. I will be thinking about you. Is his/her office one of those cold ones? Take a good warm sweater with you, just in case! - that is my knowledge contribution for today:-)

After we drove to Mayo, we had appointment the next day.
Because of my disease (Primary Sclerosing Cholangitis) PSC, my bile duct was removed at transplant along with my liver. I have no bile duct. So the surgeon created a new "bile"duct that connected my liver to my intestine. Somehow, this new duct found a small gap in the folds of my intestine and when it got pinched shut, some of the bacteria from the intestine got pushed into my liver to my blood stream. This does not usually happen.
My transplant surgeon preformed the repair surgery (hernia) and the incision was glued shut - no stitches/staples. She made the new incision on a portion of the transplant incision. So my "Mercedes" scar is intact:-) I was discharged in 1 or 2 days, and returned home. My recovery was immediate, and I only had to be careful of the incision until it healed. I probably had antibiotics to finish from the infection, though.

That all happened in mid May (2010) and I was able to do my annual Smokey Mountain hiking vacation with my husband in June.
In all,I spent 1-2 days in local hospital, 4-5 in transplant care in Louisville, i day home, 1-2 day travel, 3-4 days Rochester.

- This episode was frightening, and it made us (me and husband) realize the importance of prompt action when something is not 'right'.
I think it is why I always try to encourage patients in transplant to communicate with their transplant team, or their doctor.

REPLY
View MoreView Less
Please sign in or register to post a reply.