Re: Encephalopathy - Hi M.

[Guest guest]

Buddy yes it is all scary but we do truly understand and how you are feeling because we have been there or are in it now.

It must be a very emotional time for you in your stage and also loss of your close friend of many years.

It's nasty stuff put take as much lactulose as your Dr as prescribed for you. Also report any new or worsening symptoms asap. That is how they judge if any further rx's or tx's are needed. Some Dr's are also giving other Rx's with lactulose and a certain antibiotic to treat ease it too. Toxins also found in gi gastro intestinal tracts stomach.

Your proper diet at this time is also very important does ease the enceph symptoms and build up of more toxins. Many specialists will give you a tailor made special diet for you or refer you to a trained HCV dietitian to help you.

Are you the that still loves loaded hamburgers and french fries ??

In general all fresh foods nothing packaged or fast foods loaded with salts bad fats and preservatives small portions low lean meats mostly chicken - fish - pork very low or no red meats lots of fresh veggies. If on fluid pills be careful of too much fluid intake but keep hydrated without the day.

My Hep Dr and Team had me eating 4 or 5 smaller meals throughout the day helps with digestions fuel energy lower build up of toxins all at 1 time and not taxing putting more of a strain on liver and stomach more.

Liver is part of the intestinal processes too high bad fats foods are not broken down as fast processed as well anymore adding to build up of toxins.

Yes we do become unstable on our feet too legs body feels weak and even our gait how we walk and distribute our weight while walking changes too. If you noticed you may be walking with a more open wider stance gait walk trying to balance better using shifting your hips and weight with each step.

Forgetfulness bad long and short term memory and feeling like you and your brain is in a fog.

For me all the way to the end of esld right before my transplant I would have good and bad days spells or moments. Some times clear as a bell and sometimes not. I could feel it coming on worse and if I tried to do to much. It was like a light switch was thrown brain slower turned down or off for awhile than light switch to brain body would just switch back on again all by itself and I was clear as a bell and had more energy again. Sometimes in true fog felt dumb as a stump and than times clear and brain back on up and running again.

It's the not knowing and when me body and brain would switch off that would get to me. It was like body brain said ok we did enough time for a nap now and towards the end right before my transplant it was no stopping it. I had to take it easy relax sleep or I would knock out for a few anyway.

Pace yourself your activities movements carefully like conserving energy and brain fuel too.

If you don't mind me asking - Do you live alone or have someone in house with you to help and support you ???

Sorry it's hard keeping up with everyone and for new members to understand too.

Do you have a MELD score yet. It will fluctuate drive you nuts seeing it going up and down and still feeling like hell. Are you seeing a Hepatologist and have you decided on a transplant or not - medically able to be listed for transplant ????

It follows some of the same patterns processes but is also different for everyone. Some people don't get all the symptoms of esld or as bad.

We are here for you all the way and truly do understand. We have other members at your stage now or have been where you are now and experienced all the way through esld a transplant and beyond.

For me I got through it all and to this day with the proper mind set for the circumstances. Accepting it nothing else I can do about it keep brain mind busy active as possible on productive positive things and never allow the negatives to take complete control.

The mind and positive thinking is a great wonderful thing and tool. I know you know these things and how a person can even overcome it all even living with constant pains with the proper mind set. We just need to find it and get there. Good rx's help too.

Email me at any time just between you and me to talk about anything.

By sharing and explaining our physical and emotional experiences in group it supports us and supports helps educates us all and with our replies too.

Hang In There !!!!!!!!!!

All The Best

Deb