Liver transplant - Let's support each other

@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.

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.

@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!

@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!

@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?

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.

@ 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.
...

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

@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

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 ?