HE, seizure, ammonia 360....terrified.

Mike never had any seizures. He had HE and he also had diabetes at one point.


Sandia

I apologize and could be completely wrong and or off. But how were his electrolytes? I know we are talking about HE. And I'm sure if his sodium or potassium were out of range the Doc would of said something. But when my Hubby got admitted three weeks ago his potassium was High and his sodium was low. And I believe the doctor said with that high of potassium he could of had a seizer.

So so sorry you are going through this, hoping and praying for you both!!

themiz,

So sorry to hear what you both had to go through. No advice to give as we have not gone through any of this (yet). Hugs and prayers for better days.

Lena

Thanks to all of you. We are both worried...him more than me at this point.
Some other things to add, besides day 6 of Zoloft 12.5mg.

Day prior to seizure, themister had the last Hep A and Hep B shots.

His meds: Lactulose 4x per day 30ml, or more if needed. 2x per day 550 Xifaxan, Omeprozole 1x per day, Propranolol 10 mg 2x per day.


Week prior...I purchased area rugs that stunk so much with chemicals, we could not bring them into the house. They off-gassed 5 days in garage when we determined they were going back. How can people live with that? So when the seizure happened, we had just rolled up two rugs and wrapped in plastic. We were carrying them to front yard when he seized in our yard.

I told EMT's, ER docs, and the first couple of doctors...but they did not consider the chemical, nor the HepAB shot a factor. Basically, the dx was Seizure from HE, and high Ammonia.

@Sandia, Thanks for the info. I am so glad you post and support caregiver's still. It means so much to have experienced one's. It looks like my man is the oddball in the bunch ;)

@Ziff...I was pouring themister's meds and writing them down because he had over a month of just not being clear enough to remember if he took meds, went to bathroom, work remotes, or what year it was. I was ready to take him to ER many times, but the hepa at Mayo had me give him Lactulose every hour until it he got more than loose, then back off to regular dose.

After his broken shoulder and bonus "pain med induced HE, Magical Mystical Tour" resolved, themister tried to cut back Lactulose as an experiment. He needs 4x per day minimum, with Xifaxan. After this week's scare, themister wants 4 loose bm's per day. The seizure has us botj terrified. He always has 3...and I agree with you totally, more is better. Your experience with paranoia and anti-depressant is interesting. Normally we don't much care about the # on the ammonia, more about symptoms. I fill and check his pill boxes each day, so know if he is too confused to remember pills. Thanks Ziff. Post TIPS folks have a lot to offer folks like us.

@Emma, I appreciate your support. It means a lot. Thanks.

@ Mama Lama, I get the grouchy part. Can you imagine what it must feel like to them? Heartbreaking. It is so sad to watch people do things you know they never would have before disease. So far, I always know it is the disease, not my husband being grouchy.

@ Kristin, Everything was ok on electrolyte's. I asked about sodium, which was fine. (I forgot the number in the heat of it all). Blood sugar dropped in ER to 59. This was due to seizure, but was taken the 3 days admitted to monitor. It went to normal and remained so. I will check the potassium against last week's Mayo labs when I get my copy. Not my regular hospital where I have instant online info.

@ Susie, Hope you are still doing well. Would love an update on your post transplant journey (Do you have a blog? ) One hospitalist told me themister's ammonia was the highest he had seen. 360. I can not imagine 400. Honestly, before he seized he looked better, less confused, and more alert than he did in December and early January. He has been worse appearing at 64 than 360. Makes no sense, really. At least you caught a break on TIPS and less HE!

@ Lena, thanks for the support. I hope Jeff does not ever experience this. Did you find an insurance product last Wed?

Hugs to all, and thanks for the continued support.

Miz,

MY brother's ammonia level was 667, he was hospitalized, lactulose enema, etc. That being a weekend (always happened on weekends), the covering doc restricted his fluids. By doing so, he almost fried my brother's kidneys, all that lactulose dried him up so it was the worst thing to restrict fluids. Took a lot of therapy, can't remember exactly what, before he had normal kidney function. But no seizure. Just a gradual slip into a deep sleep, with the hourly lactulose rectally at first.

The ammonia #'s are just another factor to paint the overall picture. But most said they never saw it that high in anyone. And he was another one with a flat affect. His cranky times were before HE usually, HE made him more cooperative I think.

I'm so sorry you had to go through that scare, I can't imagine finding him blue.

Hugs,
Mae

Miz, I don't think he's the odd ball unfortunately. It's like a 50/50 chance when TIPS is done that increased encephalopathy will occur. A lady who's brother had the operation done, Her name here is Harpazomeup or something similar to that. He's had the a pretty rough time since the operation also. Trouble is we just don't see that many people in need of the surgery (thankfully).

when was the last time they checked his flow rates at the shunt? They check mine every six months. It's basically done by sonogram and they zoom in on the shunt specifically. I was told that if I saw a spike in encephalopathy or rapid weight gain to contact them immediately. Both signs of possible clogging shunt. Usually that doesn't happen until a few years after surgery. I'm four years out now and flow rates have decreased very little but something you should keep in mind. For peace of mind I'd verify that the shunt is clear. They can go in and clean it out fairly easy from what I've been told.


Ziff

More lactulose is key. I'd rather spend half my day on the throne, than be out of it. Some days I had 6-7 bms.

@Mae, 667...omg!! Yeah...the rectal enema's first. Because of seizure, (his tongue was a mess). They checked with water to make certain his swallowing worked. I know many have this happen multiple times, but this added seizure thing was not something I hear discussed. I took a video of themister in the ER after enema just chatting away. He said we were driving to do artillery for the Air Force (no past military history) when this happened...and more bizarre stuff. He was able to see first hand what he is like in a hepatic episode. Please know I think you are very special for doing the move to JAX Mayo to assist Richard. Congrats to both of you on his liver re-birthday. Oh, about fluids. I was concerned and asked ER guy why he had no fluid. I told him my husband is on Lactulose and needs fluids! They started him on a drip more to appease my freaked out self.

@ Ziff, shunt was checked Jan 21st. Sounds like you guys are on the same game plan. Every 6 months. Everything shunt was great on his scan. That was just before seizure. Since Jan 21st he had CT scan pelvis, CT abdomen, CT head and neck. MRI brain, EEG brain, chest X-Ray, bloods, 6 minute cardio walk.

It appears to be high ammonia, and problems from the drug addition of Zoloft. He was taken off Zoloft in hospital. Neurologist team wanted him off Zoloft. One mentioned many anti-depressants with seizure risk and also discussed the issue of liver post TIPS. Two hospitalists said they think the Zoloft caused increased HE. Themister is very clear headed today, but poor fellow is very upset over memory loss. He wants to stay that mentally healthy. He said he really can not remember Christmas, Wild Card week-end, (slept through them for most part), nothing from ER nor the first room he was in. Thanks again.

@David...Lactulose is all we can do, isn't it? Husband seems to have nothing wrong but HE. MELD is running 14-16...not close to top of list. Themister plans to stay away from meds that seem to cause hallucinations and increased HE post TIPS. Luckily, he has very little edema, no ascites, and very low risk of bleeds. Thanks for the reply David. Sometimes we need to hear from others to know we are not alone.

@ Deb from Canada, Would you mind sharing with me what happened in your seizure like episodes? I saw his happen. We were carrying an area rug around to the front of house. He dropped the rug, started swatting at things that were not there while stumbling backward in fear of things he was swatting. He fell straight back and seized. Then turned blue. Appeared to quit breathing. I felt so helpless and thought he was dead. Glad he is now clear. How is your move going? I read your post about Xifaxan and insurance in Canada. Seems immoral, doesn't it?

Goodnight and hugs all, themiz

Post Edited (themiz) : 1/31/2014 7:54:53 PM (GMT-7)

Xifaxin helps, along with lactulose.

My MELD hovered around 15 for 4 years. Everyone that I encountered could see I was dying, though most wouldn't say anything to me. Then my MELD jumped to 16, then 18 and a week later to 24. My transplant came 3 days later. A MELD of 15 means you're likely to continue to go downhill. There may be occasions it will be lower, but they're just blips on the screen.

I was tested for everything, every month when waiting for a transplant. That went on for 4 years. Are you saying that themister hasn't been tested since last July? If so, that's not enough.

A interesting article I stumbled on while looking for the effects of zinc in your other post Miz.


emedicine.medscape.com/article/186101-overview


Ziff