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It has been a fantastic study to see how my wife's brain works due to amnesia (1 Viewer)
- Thread starter D-Day
- Start date
El Floppo
Footballguy
Bob Sacamano
Footballguy
Holy crap. Completely missed this. It's a fascinating read. I have, conservatively, a bajillion questions, but I'll reserve it to how's she doing?
This really is a movie premise for sure. Another situation when real life is more interesting than fiction. I think I am most amazed by both @D-Day and Mrs D-Day have handled the transition. I am sure there were very rough and trying times but the posts about moving forward and the interactions of them together are really heart warming. With all the conflict today this was refreshing to see a family rally around each other in a tough time to get through this obstacle together.
SWC
Bromigo
dday i have such a high opinion of you after reading this thread and really of your wife as well that it would be hard to put down in words you honestly have restored a little bit of my faith in humanity i mean you had every chance to just give up and leave and you stuck to your heart and did the work and that is something of an amazing miracle in my opinion and all i can say is that i hope all is as well as it can be and that you are both happy and healthy
DA RAIDERS
Footballguy
I too would like an update. Just an unreal situation.
D-Day
Footballguy
UPDATE: It has been just over six years since the liver transplant, and up until January 2024 she has been doing great. The latest hick up is that we discovered vaginal and uterine cancer. As a matter of fact, she just had her hysterectomy today. She is doing so well that the doctor sent her home and I just put her to bed. She will start radiation treatment in the next few weeks, and we are expecting a good outcome because I think we caught it pretty early. Wishful thinking perhaps, but as before, I'm choosing to "live in the hope instead of living in the despair." (I think I got that from @bigbottom)
Her lost memories remain lost. She continues to build new memories from when she came out of her coma in 2017, and her retention is pretty darn good. She does daily brain activities, but she doesn't do real complex problem solving. Her math skills are limited to addition, subtraction, simple multiplication and real simple division. She has learned to use a calculator for anything too big. She is a big reader, but sticks to Danielle Steel type books.
Except for 2020-2022, we have been doing a good bit of traveling. We did a riverboat cruise in Europe, at trip to Grand Canyon and just recently a cruise to the Caribbean. So other than this cancer blip on the radar, life has been pretty good.
Her lost memories remain lost. She continues to build new memories from when she came out of her coma in 2017, and her retention is pretty darn good. She does daily brain activities, but she doesn't do real complex problem solving. Her math skills are limited to addition, subtraction, simple multiplication and real simple division. She has learned to use a calculator for anything too big. She is a big reader, but sticks to Danielle Steel type books.
Except for 2020-2022, we have been doing a good bit of traveling. We did a riverboat cruise in Europe, at trip to Grand Canyon and just recently a cruise to the Caribbean. So other than this cancer blip on the radar, life has been pretty good.
bigbottom
Footballguy
Will be praying for you both!
Beef Ravioli Part 2
Footballguy
Thanks for the update! Praying you all fair well in this latest battle!
SWC
Bromigo
it is rare but if you have been following the swcer long enough you know that when it doesnt happen that means i am being 100 percent serious and i was with what i said
beer 30
Footballguy
I'll echo what everyone has said, what an incredible story. I think it's fascinating to think about re-learning almost everything. Like the trips you just mentioned, imagine not knowing about any of that and seeing it for the first time. It has to be a pretty cool experience to watch your wife experience all this stuff through the eyes of a first timer. I'm curious, and feel free to tell me to pound sand, when this first happened, how did she react to you? I know for me, I'd probably have a hard time if my wife looked at me as a stranger and took it on faith that I was who I said I was. I'm guessing there were some really difficult moments for you & the family.
Thank you for the update and for being a bright light in a dark world. I think all of us that have read through this have nothing but respect & admiration for your efforts during this adventure you are on. What an incredible story you & your family have.
Thank you for the update and for being a bright light in a dark world. I think all of us that have read through this have nothing but respect & admiration for your efforts during this adventure you are on. What an incredible story you & your family have.
AAABatteries
Footballguy
Feel free to not answer but like others I’m fascinated by this story.
First, I’m so happy you guys got additional years together after her coma and hopefully all the cancer has been caught and you have many more years together to build new memories.
Some questions that came to mind:
1. How different is she personality wise - does she seem like the same person without memories or is she different but just looks the same?
2. Do you share bad and difficult memories with her or just the good stuff? Do you talk about any issues or problems that existed prior to her coma?
3. This may be an awkward one - Was there ever a time where you guys discussed staying together or was she totally aware and like, yes we are married and I want to remain together? I assume for you it was a given, especially to take care of her but I would be worried if that happened that maybe that person wouldn’t know what they want.
First, I’m so happy you guys got additional years together after her coma and hopefully all the cancer has been caught and you have many more years together to build new memories.
Some questions that came to mind:
1. How different is she personality wise - does she seem like the same person without memories or is she different but just looks the same?
2. Do you share bad and difficult memories with her or just the good stuff? Do you talk about any issues or problems that existed prior to her coma?
3. This may be an awkward one - Was there ever a time where you guys discussed staying together or was she totally aware and like, yes we are married and I want to remain together? I assume for you it was a given, especially to take care of her but I would be worried if that happened that maybe that person wouldn’t know what they want.
simey
Footballguy
Those are my math skills, and I've never been in a coma.
My mom loves Danielle Steel books, and Steel puts out two or three books a year. Mom says she writes good stories, and they are an easy read.Well wishes to your wife. She's a warrior, and it sounds like she is doing quite well minus the new diagnosis, and I think she and you can tackle that blip. Keep choosing to live in the hope
, and keep living your dreams! 
D-Day
Footballguy
When she came out of the coma, she was on a breathing tube for a couple of days and wasn't able to communicate with us. We had no idea of her memory issues and inability to write/spell at that time. She was in a lethargic fog for quite some time after she woke up. The first time I saw her awake and able to speak, she asked me if I was her husband. That was a little tough, but I made the "sorry to disappoint you" kind of joke.
The coma was part of dealing with hepatic encephalopathy which put people in a state of confusion. So that is what we all thought we were dealing with, and that it would subside and go away with the transplant. From July 2017 to the transplant in April 2018, we all thought her memory was going to come back. After some testing in October 2018 it started to sink in that her memory probably wasn't coming back. That period of time of not knowing her memory was lost gave us the opportunity to build up our relationship again.
If I knew her memory was gone when she woke up, I'm not sure what would have happened. I would like to think I would have acted the same as I did. I couldn't see myself walking away and dumping her care onto my kids or other people I care about.
From her perspective, her mother and sister vouched for me and told her I was her husband. She just went with it.
D-Day
Footballguy
D-Day
Footballguy
Here is some of the history that I posted in the Fatty Liver thread a number of years ago.
Please take care of your liver boys and girls. Really bad things can happen if your liver fails. Example:
My wife was diagnosed with Primary sclerosing cholangitis (PSC) (think Walter Payton) in 2010 and had the left lobe removed then. Not much happened until 2017 where due to the complication of cirrhosis, she developed Portal hypertension and Esophageal varices. Varices are life threatening if they rupture, and my wife experienced two ruptures with what the doctor called "Impressive amount of blood loss... and you don't want a doctor using the word 'impressive' when talking about blood" in July. Thankfully she was in the hospital when they occurred, or she would not have survived.
Fun Fact: When the hospital Chaplin comes to see you in the ICU waiting area, he's not just making the rounds... he's there to see YOU because your loved one isn't expected to survive. I caught onto this the second time around.
Hey, fatty liver guys, scared yet? Scared enough to take corrective action? Keep reading, oh it gets better...
After the second varices rupture, the doctors performed a Transjugular intrahepatic portosystemic shunt (TIPS) procedure. Basically this causes the blood to flow through the liver more easily, however the liver does not clean the toxins out of the blood which can (and did) lead to Hepatic encephalopathy (HE). Read this one carefully boys. You can develop HE even without going through what my wife has gone through. Well, my wife was unlucky enough to skip grades 1, 2 and 3 of HE, and straight into Grade 4 (coma) for six days.
The HE coma, led to her having seizures, >>> brain swelling >>> permanent brain damage >>> revision of the TIPS to lower the HE >>> more varices bleeding that the doctors feel lucky to stop (by the way, having to call your family to come to the hospital to say their goodbyes--twice--not an easy thing to do). Basically she is dealing with amnesia and having to relearn just about everything. Although she is getting better, it has been a bear. Here's hoping for a liver transplant! There's more, but I will stop here.
So, if you are having any sort of liver issue, I hope my little tale will scare you enough to take some positive actions to improve your health.
tltr/ Don't mess around with your liver, because the consequences of cirrhosis will F you up.
Please take care of your liver boys and girls. Really bad things can happen if your liver fails. Example:
My wife was diagnosed with Primary sclerosing cholangitis (PSC) (think Walter Payton) in 2010 and had the left lobe removed then. Not much happened until 2017 where due to the complication of cirrhosis, she developed Portal hypertension and Esophageal varices. Varices are life threatening if they rupture, and my wife experienced two ruptures with what the doctor called "Impressive amount of blood loss... and you don't want a doctor using the word 'impressive' when talking about blood" in July. Thankfully she was in the hospital when they occurred, or she would not have survived.
Fun Fact: When the hospital Chaplin comes to see you in the ICU waiting area, he's not just making the rounds... he's there to see YOU because your loved one isn't expected to survive. I caught onto this the second time around.
Hey, fatty liver guys, scared yet? Scared enough to take corrective action? Keep reading, oh it gets better...
After the second varices rupture, the doctors performed a Transjugular intrahepatic portosystemic shunt (TIPS) procedure. Basically this causes the blood to flow through the liver more easily, however the liver does not clean the toxins out of the blood which can (and did) lead to Hepatic encephalopathy (HE). Read this one carefully boys. You can develop HE even without going through what my wife has gone through. Well, my wife was unlucky enough to skip grades 1, 2 and 3 of HE, and straight into Grade 4 (coma) for six days.
The HE coma, led to her having seizures, >>> brain swelling >>> permanent brain damage >>> revision of the TIPS to lower the HE >>> more varices bleeding that the doctors feel lucky to stop (by the way, having to call your family to come to the hospital to say their goodbyes--twice--not an easy thing to do). Basically she is dealing with amnesia and having to relearn just about everything. Although she is getting better, it has been a bear. Here's hoping for a liver transplant! There's more, but I will stop here.
So, if you are having any sort of liver issue, I hope my little tale will scare you enough to take some positive actions to improve your health.
tltr/ Don't mess around with your liver, because the consequences of cirrhosis will F you up.
As others have said, feel free to ignore my questions:
- From one of your other answers, it sounds as though she was relatively immediately aware that she was missing memories. Does that mean that it wasn't as though she was a kid waking up in an adults body (from her point of view)?
- You mentioned her mom and sister confirming for her that you're her husband. So she recognized them (sister especially, who would presumably look very different than she remembered)?
- Are there any forgotten events that would have shaped some aspect of her personality? If so, did the personality changes that the events caused stay with her? I'm picturing something like if she was very afraid of dogs because of getting bitten by one. With the memory gone, did the fear remain?
El Floppo
Footballguy
Can you send them to NYC to speak to my wife. TIA.
3C's
Footballguy
Made more fascinating due to my experience with my wife that pales greatly in comparison. A few people here know my wife had a brain aneurysm which ruptured (hemorrhage) 8 years ago. No memory loss like that but there are moments, I call them short term memory loss. Stories are repeated, things are forgotten, etc. I blame it on "having part of brain sucked out" and whenever there's a "moment" she'll come back with "I had brain surgery, ok?!"
Feel very fortunate that her PCP recognized an issue right away and sent her straight to the ER. From Johns Hopkins: About 25% of people who experience a brain aneurysm rupture die within 24 hours. Around 50% of people die within three months of the rupture due to complications. Of those who survive, about 66% experience permanent brain damage. Pretty sure she had brain damage before the rupture (I mean she did agree to marry me).
beer 30
Footballguy
Thanks man, really appreciate you opening up with these details. Certainly a journey unlike any I've heard of. Very cool how you & the family have handled everything. Godspeed on the adventure!
D-Day
Footballguy
I have thought about questions 1 and 2 myself for a long time. She was very lethargic early on, and the part of the brain that was damaged effected her vocabulary. So she didn't let on about any "wow" moments like when she first saw herself in the mirror. I showed her up to date pictures of her mom and sister, asked her if she knew them, and very matter of fact stated and pointed "that is my mom, and that is my sister X". I think I did this before she saw them in person, but could be wrong. She didn't seem shocked about them being about 50 years older than what she remembered. Again, I after reflection, I found that very odd and have asked her about it several times. She doesn't have an answer.
As for #3, nothing like that I am aware.
D-Day
Footballguy
Praying for the best for you too. I think it is luck of the draw on how much damage, and what part of the brain was damaged that affects the memory. With my wife, she has very strong memories of music. The first Thanksgiving after her coma, we are driving along with Christmas music going. She had not listened to any of this type of music since she woke up. She is singing right along with almost all of the songs, even the more recent songs. Not behind, but right along with the song. I start thinking she is getting her memory back, but her neurologist said "nope, different part of the brain".Made more fascinating due to my experience with my wife that pales greatly in comparison. A few people here know my wife had a brain aneurysm which ruptured (hemorrhage) 8 years ago. No memory loss like that but there are moments, I call them short term memory loss. Stories are repeated, things are forgotten, etc. I blame it on "having part of brain sucked out" and whenever there's a "moment" she'll come back with "I had brain surgery, ok?!"
Feel very fortunate that her PCP recognized an issue right away and sent her straight to the ER. From Johns Hopkins: About 25% of people who experience a brain aneurysm rupture die within 24 hours. Around 50% of people die within three months of the rupture due to complications. Of those who survive, about 66% experience permanent brain damage. Pretty sure she had brain damage before the rupture (I mean she did agree to marry me).
STEADYMOBBIN 22
Footballguy
I’m really astonished you to have pretty much made it work. Being intimate together had to be very bizarre for both of you.
What I really wanna know is, do you get to re-experience, movies, and music?
Obviously, I’m just trying to keep things light, bur as somebody who really enjoys and watches a lot of reaction videos, It sounds amazing (from that small perspective, of course)
What I really wanna know is, do you get to re-experience, movies, and music?
Obviously, I’m just trying to keep things light, bur as somebody who really enjoys and watches a lot of reaction videos, It sounds amazing (from that small perspective, of course)
D-Day
Footballguy
Music stayed with her, but TV and movies are all new experiences. Thinking on it now, I bet we could have made a killing on you tube. Oh well.
urbanhack
Fight The Power!
Thanks for posting this. I just did a forum search for "Encephalopathy" because my sister has had some issues and just in the last 48 hours she has had some very strange behavior and she's in the ER right this very minute being diagnosed.
She was diagnosed with cirrhosis late last summer. She's had neuropathy and physical disabilities since the initial episode that put her in the ICU in July. She then found out she needed to start the process of having a liver transplant and has been going through the process and steps. Part of this was the shunt (TIPS) procedure about a month ago. Last week the Dr. was raving about her progress and how she's passing all of the tests and everything looks great.
But just heard from my mom that she was out in the street in the middle of the night the past few nights and now they just took her to the ER because she's acting schizophrenic, paranoid and completely abnormal behavior.
Typing this out here because I'm in Portland and all my family is back in Indiana. My older sister has been handling a lot of the tasks and management of my younger sister, but she just landed in Italy yesterday. My mom is freaking out trying to determine what is happening and what to do....so there's a good chance i'm jumping on a flight back in the next 24 hours.
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D-Day
Footballguy
I'm so sorry to hear about your sister. I'm not a medical guy, so some of the information that I give you may not be accurate. The TIPS is used to reduce portal hypertension and varices, but may allow toxins and ammonia to build up in the blood and increase HE. So initially the TIPS made some things better, it could have opened the door for HE to accelerate. I left links in my quote above for both.
HE can cause personality change, but what you describe may not be HE, or it could be exacerbating an underlying problem. My wife's experience is quite different from what your sister is experiencing. My wife went from TIPS to coma in a day, so she did not experience a more gradual decent into HE. One thing I was told was that some liver patients are more awake at night time, so that may be why she is wondering during the night.
I hope she is able to get a liver transplant, and all of this clears up. PM me if you want any other information, or even to set up a phone call. Prayers.
