Liver disease itching: What helps?

Posted by jeanne5009 @jeanne5009, Nov 26, 2018

Does anyone have info or treatments for itching? My scalp and lower back have a very itchy rash. Tried ointment shampoo, antihistamine and steroids...wont go away. I am Stage 4 liver cirrhosis. Dermatologist and PVP are stumped.

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Profile picture for a149771 @a149771

I am on the list waiting for New liver. How long after being approved for transplant before
Before I get a call for surgery

Would like feedback back.

Thanks
Rick

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Hi, @a149771. Congratulations on being placed on tht waiting list to receive your new liver/new life. My transplant was in 2009, and I remember that I asked the same question! And the answer that I received, as well as everyone else, is that there is no way of knowing when you will get the call for your transplant surgery. Waiting for an organ transplant is not like waiting in line to get into a concert or event.
The amount of time on the waiting list is only a part of the criteria. I have located some information under the heading: "I’m at the top of the list. Will I get the next liver?" in this
- Connect Blog Article - Liver Transplantation: Understanding the MELD Score
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/liver-transplantation-understanding-the-meld-score/
Here is what other members have done while waitinbg for the transplant call-
- Waiting for the Call: What needs to get done at home before you go?
https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/
@a149771 - Does the information that I shared help to answer your question? What are some questions that you would like to ask as you begin the waiting process? How are you feeling?

REPLY
Profile picture for a149771 @a149771

I am on the list waiting for New liver. How long after being approved for transplant before
Before I get a call for surgery

Would like feedback back.

Thanks
Rick

Jump to this post

Unfortunately Rick - there is no certain time frame. So many factors play into the decisions as to who will be offered an available organ. MELD score, blood type, body mass, even the region you live in and the distance to the hospital can impact it. I waited nearly 2 years, changed hospitals and eventually was transplanted at Mayo Jax in Feb 2022. You or your caregiver need to advocate and press your case with the transplant team. I found that this helped move my case along. Where are you listed?

REPLY
Profile picture for gap @gerryp

Unfortunately Rick - there is no certain time frame. So many factors play into the decisions as to who will be offered an available organ. MELD score, blood type, body mass, even the region you live in and the distance to the hospital can impact it. I waited nearly 2 years, changed hospitals and eventually was transplanted at Mayo Jax in Feb 2022. You or your caregiver need to advocate and press your case with the transplant team. I found that this helped move my case along. Where are you listed?

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Mayo Clinic in arizona
Thank you for the info. Any information is appreciated

REPLY
Profile picture for Rosemary, Volunteer Mentor @rosemarya

Hi, @a149771. Congratulations on being placed on tht waiting list to receive your new liver/new life. My transplant was in 2009, and I remember that I asked the same question! And the answer that I received, as well as everyone else, is that there is no way of knowing when you will get the call for your transplant surgery. Waiting for an organ transplant is not like waiting in line to get into a concert or event.
The amount of time on the waiting list is only a part of the criteria. I have located some information under the heading: "I’m at the top of the list. Will I get the next liver?" in this
- Connect Blog Article - Liver Transplantation: Understanding the MELD Score
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/liver-transplantation-understanding-the-meld-score/
Here is what other members have done while waitinbg for the transplant call-
- Waiting for the Call: What needs to get done at home before you go?
https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/
@a149771 - Does the information that I shared help to answer your question? What are some questions that you would like to ask as you begin the waiting process? How are you feeling?

Jump to this post

Feeling extremely tired and I have an itching problem going on.

Thanks for your reply

REPLY
Profile picture for gap @gerryp

Unfortunately Rick - there is no certain time frame. So many factors play into the decisions as to who will be offered an available organ. MELD score, blood type, body mass, even the region you live in and the distance to the hospital can impact it. I waited nearly 2 years, changed hospitals and eventually was transplanted at Mayo Jax in Feb 2022. You or your caregiver need to advocate and press your case with the transplant team. I found that this helped move my case along. Where are you listed?

Jump to this post

We are listed at the Mayo Clinic in Arizona.

Thanks for the feed back

Rick

REPLY

Have you been check for Shingle's if not that the first thing I would have checked for

REPLY
Profile picture for a149771 @a149771

We are listed at the Mayo Clinic in Arizona.

Thanks for the feed back

Rick

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Mayo Clinic has one of the top transplant programs in the country if not the world, so it’s good that you are there. In terms of itching, this is a symptom of liver failure due to the buildup of bile salts in your system. The liver is not able to eliminate them. I itched terribly for nearly 2 years and tried everything to alleviate it. There are drugs your doctor can prescribe that may work. I tried all of them, and none of them really helped me. You should also try Sarna lotion (I preferred the unscented version), and anti-histamines like Benadryl can also help. I also used witch hazel on a facecloth to help get some relief. All of these were temporary. Ultimately what worked for me the best were ice packs. My wife would pack me in ice at night. I think the cold distracted my neurological system from the itching. It would allow me to get some rest. She also bought me white cotton gloves on Amazon that I would wear at night to prevent myself from scratching my skin raw. I hope that you might find some relief from some of these ideas.

REPLY

I use "Sarna" cream. It smells terrible, but it works great. I am 4 years post and still get itching issues.

REPLY
Profile picture for gap @gerryp

Mayo Clinic has one of the top transplant programs in the country if not the world, so it’s good that you are there. In terms of itching, this is a symptom of liver failure due to the buildup of bile salts in your system. The liver is not able to eliminate them. I itched terribly for nearly 2 years and tried everything to alleviate it. There are drugs your doctor can prescribe that may work. I tried all of them, and none of them really helped me. You should also try Sarna lotion (I preferred the unscented version), and anti-histamines like Benadryl can also help. I also used witch hazel on a facecloth to help get some relief. All of these were temporary. Ultimately what worked for me the best were ice packs. My wife would pack me in ice at night. I think the cold distracted my neurological system from the itching. It would allow me to get some rest. She also bought me white cotton gloves on Amazon that I would wear at night to prevent myself from scratching my skin raw. I hope that you might find some relief from some of these ideas.

Jump to this post

I really appreciate your suggestion. I will try it.

Rick

REPLY
Profile picture for frederickf @frederickf

I use "Sarna" cream. It smells terrible, but it works great. I am 4 years post and still get itching issues.

Jump to this post

Yes, I didn’t like the smell either. They do make an unscented version that is hard to find. My wife found it on Amazon I believe, and it was much better.

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