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1691407 tn?1332712547

A hepatic encephalopathy documentary

Hi~ I have not posted in a while.  My husband Gary finished Telaprevir on Sept 22, 2012.  He is post transplant (Jan 2010) and has cirrhosis.  He is being treated at the University of Arizona Medical Center in Tucson.  He is on the 48 week program, so he still has over 24 weeks left of Riba and Interferon.  He is undetected!  That is great news, but his health otherwise is not so good....his mood makes it him very difficult to live with.  His liver enzymes are in the 20's and his BUN was only 17!  His Alk phos was even in the 120's, but his HE is bad!!!  He is taking Lactalose when he and only when he WANTS to . . .   in any case, I could go on forever, but the main reason for this post was to share this new documentary with everyone that I found out about today!  It is quite interesting and it is SO true.  Here is the link to the trailer.  My understanding is that is is being shown first this weekend in Boston at the huge liver convention there.  Gary's doctors flew from AZ to Boston for this convention, I do hope they share it with everyone there!  

https://www.hesback.com/   is the website.  I hope you all get a change to take a peak at it, I think you will all find it very interesting.

Take care, Allison
15 Responses
Avatar universal
Allison, oh my God, that was heart wrenching.
Thank you so much for sharing this link.
May you both find peace.
446474 tn?1446347682
Thanks Allison. I am sorry Gary has recurrence of his hep C and it has progressed so far. Poor guy is dealing with a very heavy load.
Great news he is undetectable!!! That is very good news. Treatment post-transplant is rough to say the least. I have a friend on 60 weeks of peg-INF and Ribavirin. I have seen what he has gone through... Terrible is a nice word for it.

A little Lactulose tip. 3-4 bowel movements per day mandatory. If not, the ammonia and other toxins build up and poison our brains. "Where am I? Why am I here?
I am hitting the nasty Lactulose 3-4 times spread through the day. Assuming he is pretty ill and mostly home like me it isn't too difficult. Just be near a toilet at all times. Has he tried Xifaxan for HE? It might help. Expensive as sin though if you are on Medicare.  :-(

Wow that was hard to watch.That was the first time I ever saw anyone else stumble on their words like I do. Luckily I can edit my typing but I still make lots of typos and use the wrong words cause my head gets these strange associations between words.

Thanks for sharing. So glad that a transplant will get rid of my HE. I can't imagine what it is like to think clearly again. It is one of the things I am looking forward to. To think and have the energy to socialize with my friends again after all these years. Seems unimaginable now. But I have hope.

Best of luck to Gary and yourself.
Avatar universal
thank you for posting this.  i recently completed 48 weeks of triple therapy and was undetected at 4 weeks and at the end of treatment.  i have been experiencing cirrhosis for at least 5 years and have experienced confusion both before and during treatment.  this short video reminds me why i treated.
blessings to you and your husband.
163305 tn?1333668571
I'm almost afraid to watch it.

While sitting at the lab waiting my turn to get my blood drawn, I spoke to a couple of people waiting to do their pre-transplant labs done.
It was de ja vu, as they spoke, I saw myself a few years ago, with that sense of being half here and half not, like a veil was over my head all the time.

Thank you Allison for sharing this link.

Wishing you and your husband only the best  luck going forward.
3588970 tn?1352500746
Allison, I can't quite tell from your post if you feel like YOU are coping with your hubby's challenges.  Please do remember to take care of yourself first.  I liken this to putting your oxygen mask first in an emergency: you really can't help others if you're not breathing yourself.  Best wishes to both of you.
1116669 tn?1269143266
Wow: Thanks for posting that film.....While it made my depression depressed (I'm cirrhotic and waiting for the result from my 3.5 month post triple-tx PCR) it also gave me an evocative tool to share with others. I believe I have had encephalopathic cloudiness on a continuum for some time (along with day-night reversal) but my hepatologist has never been certain. Lately my primary deficit is losing my point while talking - a sort of impossibility to "think backwards". Verbal intelligence is a huge part of my personality so this deficit makes me feel intellectually alienated from myself....I'm also just not sure if my experiences with Xifaxin and/or Lactulose have helped....Anyway: living with a question mark is a challenge! d
1815939 tn?1377991799
Thank you so much for posting that video trailer.

It is truly heart wrenching to watch. However, it is an important that people realize just exactly how devastating HE is. Hopefully it will add more understanding and empathy as well as driving home the point of how important it is to treat and get rid of Hep C.

My thoughts are with you and your husband.
1691407 tn?1332712547
I am dealing with life with all the tools, love, hope, and patience that I have.  Some days are very difficult.  Gary and I have been through a lot!  The job of trying to keep a person alive that you love very much is sometimes a very thankless job.  Being my husbands caregiver has been the biggest challenge of my life.  I try very hard to find that oxygen mask every day.  Some days I breathe better than others.  I am living with the love of my life, however this person is not the same.  Even though he is hep C free, has a new liver and is alive, he is not very nice some times, and that is hard to accept.  I do completely understand the affects of all his illness, I do know he is not the same.  One wish I have is that the doctors were more understanding of what it is like for the patient and the family living and taking care of them.  I really hope that all the doctors at this convention in Boston watch this documentary.  I honestly believe they NEED to see what it is like for the patient and the families dealing with HE 24/7.

Thanks for the best wishes, they are needed most days.  I am a very strong person and I adore my husband.  I get lots of emotional support from his sister and mother, my children and my mother.  They help make my job possible <3


with patience, Allison

3588970 tn?1352500746
It sounds like you are doing a magnificent job. I've found personally that no matter how many people might tell me that, their faith in me goes to waste if I don't give myself personal credit. I ask myself every day "have I done my very best?".  Some days my best is lacking, but if I try, I triumph and that's cause for personal celebration.  Do something nice for yourself tonight. Tea works for me :) And please forgive me if I've assumed too much.  You might be taking excellent care of yourself, too!
Avatar universal
I'm so glad to hear that Gary is UND and still able to continue on tx, but I'm so sad to hear how much difficulty he's having with HE.  I wish there were something further that his doctors could do to help with the HE.  I don't know enough about that to offer any advice, but it sounds like more frequent bowel movements may help.  Is it possible for you to get any assistance with home health care or respite care?  
Avatar universal
Reality is heart breaking!  I had no idea.  Thanks for posting the trailer.

1491755 tn?1333201362
I wonder at what point the brain starts to go.  Stage 2,3?  I swear I cannot think like I used to or put down thoughts on paper like I used to.  My mind is blank at times I struggle to explain the simplest of things. It ***** to feel you're not as smart as you once were.
Avatar universal
It really is scary. I think it is at stage 4. I have not experienced HE anything like what the ppl in the documentary were living with, but all my processes slowed down and I often blanked out. I still do at times.
But according to my Dr. I am stage four and before TX was close to decomping.
It really does sukk, doesn't it.
163305 tn?1333668571
Having gone through HE and a transplant, I use my sister as  my gauge.
She is a 3 years older, doesn't have hep C and is very healthy.
And guess what ?   She forgets things more than I do !

Watching her I am reminded that not all the changes happening to us are connected to this virus or our treatment of it.

I recall reading an article years ago about how the brain changes as we near 50.

BTW: I watched the video and though I could relate, I personally never was as aware of what was happening to me as those people seem to be. All I knew was I slept more and more and people didn't seem to be connecting to me. They'd ask my husband about me while I standing right there, thinking, why won't they look at me ? Then, I saw a photo of myself from that time. I don't like to look at it either !
Avatar universal
Just an update on the documentary "He's Back".   Mike, the only guy portrayed in the show died Feb 10, 2014 while awaiting a liver transplant.   His wife Sandy is on a different support group and relayed the news.  So very sad......Kim
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