Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

So happy to hear of your positive outcome ! I had my second liver transplant at Mayo in Phoenix in 2010( long story). I have no recollection of the first 3 weeks of a 6 week stay. It was never called a coma, but I believe it was. Wishing you continued success !

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@joanaiken

Thank you for asking about the biopsy. The procedure went well. The results showed no acute rejection, but the beginning of a chronic mild rejection. Cellcept was added to my medication regime. Tomorrow I will have repeat labs and an MRCP without contrast. There may be some issues with the bile ducts. If this exam is not conclusive, t may be followed by an ERCP. Post second liver tx I had this procedure twice to place stents for bile duct stricture due to scar tissue. All in all, taking this a day at a time. I trust my team at Mayo Phoenix.

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@joanaiken you have been through a lot since your transplant. I think when you trust your team it is very calming, and if you don’t trust them you should move on and find a team you can trust.
I hope everything will work with the MRCP and you won’t have to have an ERCP. I had no ideas what these were so I just googled them. What did we do before we had online resources like google to learn anything we want in a matter of seconds? My mother was brilliant and my sister and I have commented on how much she would hsve loved these capabilities.
JK

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@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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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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@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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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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@khh

I’m trying to hold it together and yes I’ve had trouble with HE. I have been taking Xiphaxan for almost 3 years now. Unfortunately. This is only the tip of my iceberg. I don’t think anyone knows how I’m walking around. I guess I’m very stubborn. I can’t always respond to everyone bc I’m still working full time and I fall out when I get home. Most recently my AFP began elevating.
I just want to be evaluated by someone with more experience and knowledge than the NP I’m seeing. Thank you for your prayers!

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@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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are all related. No one has confirmed that as yet. Grhhhhh!

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@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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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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@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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@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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@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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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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@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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@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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