1. < Transplants

Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

jeanne5009 | @jeanne5009 | Feb 26, 2020
In reply to @gaylea1 "@contentandwell I under went 4 ERCPs post transplant and contracted pancreatitis 3 of those times. The..." + (show)
@gaylea1

@contentandwell I under went 4 ERCPs post transplant and contracted pancreatitis 3 of those times. The first time I wasn't sedated enough and was fully awake and aware during the entire procedure. It was painful and I was gagging and choking the whole time. I have to undergo another ERCP on March 16th to either remove or replace my bile duct stent. I am a nervous wreck. Just getting over a bout of shingles.

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@ please tell them to make sure you are out..
I know they don't want you to have any more anesthesia than necessary but that is ridiculous! Happened to me once with an EDG...awful!!! Have one next Mon. I will be telling them and thinking of you.
...

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2 replies
joanaiken | @joanaiken | Feb 26, 2020

I have had about 12 EGDs with sedation. Only once I woke up before the procedure was over. It was awful !!! Best wishes with your upcoming one, sending positive vibes and always remember to be your own advocate. Prior to the procedure tell them about your previous experience and want reassurance that sedation will be appropriate.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 27, 2020
In reply to @beckyy39 "I've been hospitalized twice for HE but haven't had further issues once I was put on..." + (show)
@beckyy39

I've been hospitalized twice for HE but haven't had further issues once I was put on xifaxan 2 x daily and lactulose. I wasn't aware it was happening and was driving in that condition. When I had coworkers, clients, and my son notice strange behavior, I was sent to the ER and my ammonia level was near 90. I didn't even know my name, address, or even that I was at the hospital...I have never been so scared, so my heart goes out to you. Fortunately my eval visit starts on March 10 and it is about 100 miles to Mayo Clinic in Jacksonville from where I live so my 17 year old son (caregiver) and I will be in a hotel that whole time and I hope the process is smooth...have had a very hard week.

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@becky39, In advance of your evaluation appointment, and since you will be at Mayo JAX, here is something to consider..if you have time.
Liver, Kidney, Pancreas Transplant: Second Chance Support Group, Mayo Florida Tuesdays 11:00 - 12:-00.
https://connect.mayoclinic.org/event/liver-kidney-pancreas-transplant-second-chance-support-group/

Becky, Did you get your appointment schedule yet? Do you have any questions about it?

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gaylea1 | @gaylea1 | Feb 27, 2020
In reply to @joanaiken "I have had about 12 EGDs with sedation. Only once I woke up before the procedure..." + (show)
@joanaiken

I have had about 12 EGDs with sedation. Only once I woke up before the procedure was over. It was awful !!! Best wishes with your upcoming one, sending positive vibes and always remember to be your own advocate. Prior to the procedure tell them about your previous experience and want reassurance that sedation will be appropriate.

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@joanaiken are EGDs the same as ERCPs? I'll have to look it up. I always tell the nurses about the sedation but they say that they give me the maximum I can have. Unfortunately I have been on so much pain medication that I seem immune to it. I need a stronger dosage than most people. Go figure? My main concern is the pancreatitis. That takes morphine, demerol, and trazadone with Tylenol in between. Most are delivered via IV or a shot in the butt. For the ERCP they give you a muscle relaxant and a numbing throat spray. That's all. I'm just past my one year anniversary and it's been quite a ride!

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gaylea1 | @gaylea1 | Feb 27, 2020
In reply to @jeanne5009 "@ please tell them to make sure you are out.. I know they don't want you..." + (show)
@jeanne5009

@ please tell them to make sure you are out..
I know they don't want you to have any more anesthesia than necessary but that is ridiculous! Happened to me once with an EDG...awful!!! Have one next Mon. I will be telling them and thinking of you.
...

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@jeanne5009 with the ERCP they only give you a muscle relaxant and numbing throat spray. They won't put you out...believe me I've asked. It's brutal!

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stella25 | @stella25 | Feb 27, 2020

My son has had 5 ERCPs in the last 2 years. They always give him anesthesia. He has never experienced a problem with any of the procedures. He is always prescribed an antibiotic to avoid infections, pancreatitis, etc.

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gaylea1 | @gaylea1 | Feb 27, 2020
In reply to @contentandwell "@khh. It sounds as if you are staying strong, that’s admirable. To me HE was the..." + (show)
@contentandwell

@khh. It sounds as if you are staying strong, that’s admirable. To me HE was the most miserable thing, I still get tears in my eyes when I remember the more severe episodes. I was very fortunate that I wasn’t working.

@beckyy39 as I mentioned the xifaxan kept me HE free for a long time too.

I hope the eval goes well and produces good results, and that you will update us. I feel such a bond with those of you going through the process and who have HE. I think only those of us who have “been there” can understand completely.
Hugs to both of you.
JK

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@khh @beckyy39 I had moderate to severe HE episodes. I did go into a coma (that's when they diagnosed me) and I was out for 3 days... unresponsive. Then I stopped breathing on my own. They were just about to hook me up to a ventilator when I came to. I was hospitalized for three weeks. I didn't know what month it was, day, my address, telephone number basically any personal thing. It was frustrating!! I couldn't walk or eat or go to the bathroom on my own. Catheter and Depends! Anyway it took me about 6 months to recover from that one episode. I was put on lactulose immediately but I still ended up in hospital a few more times. Then they added the rifaximin and I steadied out. My driving license was immediately suspended. My story is so long that I could write a book lol! Anyway, take HE seriously. Always tell your doctor even if you have a mild episode.

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gaylea1 | @gaylea1 | Feb 27, 2020
In reply to @joanaiken "Wow. I am so sorry to hear that !!!!! Pancreatitis 3 times is 3 times too..." + (show)
@joanaiken

Wow. I am so sorry to hear that !!!!! Pancreatitis 3 times is 3 times too many. I have had several ERCPs and was given Propofol. I was out the whole time and no bad after effects. I also had shingles 1 year post 2nd liver transplant. How immunosuppressed are you ?

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@joanaiken I didn't realize there could be levels of being immunosuppressed? I thought either you are your not. As best as I know I am completely immunosuppressed. As for the ERCPs they told me that they don't put people all the way out. That we have to be conscious the whole time. I always ask to be put out but they won't do it.

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1 reply
gaylea1 | @gaylea1 | Feb 27, 2020
In reply to @joanaiken "I trust my Mayo liver team so much. I am a retired RN and have always..." + (show)
@joanaiken

I trust my Mayo liver team so much. I am a retired RN and have always been my own advocate and questioned treatments and conditions. With recent events, I have finally let go. Still paying attention and trusting them has decreased my stress levels so much. There may be issues with my bile ducts, so ERCP scheduled for March 18th. Sedation can be a wonderful thing ! LOL. My Mom has also expressed that she wish she had learned more about the internet. However she has low vision and I am her seeing eye daughter.

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@joanaiken my ERCP is scheduled for March 16th. I hope it doesn't mean another week in the hospital.

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gaylea1 | @gaylea1 | Feb 27, 2020
In reply to @stella25 "My son has had 5 ERCPs in the last 2 years. They always give him anesthesia...." + (show)
@stella25

My son has had 5 ERCPs in the last 2 years. They always give him anesthesia. He has never experienced a problem with any of the procedures. He is always prescribed an antibiotic to avoid infections, pancreatitis, etc.

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@stella25 I guess I'm just not one of the lucky ones 😯

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