waiting for a t/p hep c cirrohsis

Hi! Welcome. You can see I am a caregiver spouse from my husband's info below. Can you tell us what transplant center you are listed with and how long you have been listed? And what your MELD score is? So happy to hear you are having good luck with getting on the new treatment. Several here are treating with Solvaldi/Riba and seem to being doing quite well! Again, welcome. Big Hugs

It sounds like you and my husband have a lot of the same history as he was diagnosed in 2005 during a routine physical. Most ESLD folks have been though it all....and you are correct...it is quite a ride. Are you taking Xifaxan and Lactulose for the HE?

What MELD does KU Med transplant at? You said you are a MELD 22....and just in case you want to check it out, I hear Mayo Clinic FL transplants around 22.

I am really glad to hear you are on treatment now. You may wish to read through the posts on this site of those folks using the same meds you are using for Hep C. Some are half way through the new Solvaldi/Riba or Solvaldi Olysio treatment and have put much good info on this site that might help you know what to expect going forward. Side fx seem much less than the old Interferon/Riba treatment combo. Getting the Hep C eradicated prior to transplant will be a huge advantage!! Hang in there...big hugs

hi, sorry about your advanced cirrhosis. i also treated with cirrhosis in 2012, with int/rib/inc. i did 48 weeks, and i have been svr for 14 months. i have read about people in your unique population treating with sov/rib. what is the legth of your tx?

kudos to your dr
barry

Yes, waitin', my husband (we call him themister) had TIPS about 14 months ago. HE has been poorly controlled the first year. Themister had a hepatic seizure two months ago, turned blue and did not appear to be breathing. Ammonia was 360. At this time, themister has been free of HE for two months, and is doing better than he has for over a year.

Meds given for other things are one of the things that increased my guys HE. They put him on low dose Zoloft in January this year....and he did not have depression. HE makes him appear flat Within 24 hours he was having night terrors and hallucinations. He said he felt like his body was shutting down and had a seizure from the high ammonia at day 6 of the Zoloft. So, needless to say, anti-depressants were more harm than good for him. Also, he broke his shoulder last summer and had to be on a short course of pain meds (a couple of weeks as it was non-surgical). Pain meds caused hallucinations and his HE was awful during that time, just like with the Zoloft. And a year ago he was on Ambien for the sleep issues. After TIPS, Ambien had to be stopped because it caused hallucinations and bad HE. So now he stays off anything but Lactulose, Xifaxan, propranolol (blood pressure) and omeprazole (past gastric bleeds). And it is working great for two months.

What is your blood type, waitin'? Themister is an O and he is 5'8" and right now, 197lbs. As you can see below...he is listed at Mayo Clinic AZ. He is truly, the most courageous person I know. I admire his courage to face this disease every day. They transplant at about 27-28 here at Mayo, from what they told us. Glad you are at a center with a low MELD transplant number. Shouldn't be long now.

Do I understand correctly that you are in Kansas alone, waiting on a transplant? Do you have a caregiver with you? Hang in there. This is a great place for sanity saving, and decades of experience on pre and post transplant, TIPS, HE, and that roller coaster you are so very familiar with. Big hugs....

hi......blood type a+
you hubby and i are twins i could have been reading my own story.i was in a coma for 5 days at ucla and three days in kansas i cannot tolerate any pain meds either this was a lot of fun when i passed a kidney stone a few weeks back, ambian =bad,, i have what they call waxing and waning HE .I can come in and out in a few hours to being hospitalized..but mine is very weird i am almost euphoric and i love every one..every nurse is the prettiest girl ive ever seen and the doc are like my best buddies..a few times i was combative and had to be tied down but they figured out if i am approach slowly and kindly i am a teddy bear.hallucinations well lets just say i am very experienced in that area so i think they are cool and ive had some weird ones ..all that said i can recognize oncoming HE and can tell my doc or someone before it goes full blown...I am not alone here my sister in law has been my caretaker and ive put her through the wringer .my wife has to keep working in order to keep our insurance in califonia..i think ill treat my self to a movies today.........be well

THANKS.....that to is my motto ..it will turn out the way its suppose to.....last year i got the call for my t/p..but i was battling an infection in my belly..so we had to pass..Someone needed it worse then i did i figured .i hope it worked out for them

thank you for the warm welcome

i forgot to mention my viral load is 19000***
so a little under 2 million

Post Edited (waitin on a t/p) : 3/28/2014 5:24:27 PM (GMT-6)

Hi Waitin,

I'm a tad late but welcome to the forum. Here's a little advice to your sister-in-law and wife when you are showing signs of HE. This from my brother's (doctor on a world renowned transplant team at Mass General Hospital) when asked what to do in-between lactulose doses....."lactulose, lactulose, and more lactulose"

We eventually went to Mayo Clinic in FL for TP as they were transplanting in the mid twenties. Once, my brother had an ammonia level of 667 and he was nearly comatose. That is when he had minor damage to his kidneys. They gave him lactulose almost constantly at first, then titrated to about once every 4 hours. You cannot overdose on lactulose. Out of about 7 hospitalizations, 5 of them were from HE and its effects. What did they do in the ER? Lactulose, lactulose, and more lactulose.

My brother also had to wait for a large liver, being he is 6'1 or 2 but he waited only 11 days on the list.

Best of luck with your treatment, sure hope that works for you rather than going the transplant route :)