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Posted 2/28/2012 11:49 PM (GMT 0)
Hi Folks, I don't know if anyone if still following this thread but I have been diagnosed with Hep C and am on Lactulose and Rifaximin (xifaxin) for two weeks now. We think I got the Hep C from a blood transfusion back in 1979 when I was in a nasty car accident. My amonia levels have been anywhere from 122 to 200 via blood tests that were taken at a physical rehab facility. Most likely I've had elevated levels for quite some time now but never knew it.

I've also had 4 strokes and am only 52 and am prone to siezures. Sucks to be me! I've not had any confusion or some of the effects others have had but I do tire easily. I am totally surprised at this and I think it may only be a matter of time now. I was told by my gastro doctor that my liver if fairly shot and because of all the other meds I have to take, a transplant is just not happening. He does not think any clical trials would help either. So for now I'm just doing time on planet earth as they say. How long? I have no clue.... As others have said, the lactulose is a bummer!! I take it 3 times a day and it seems I'm in the bathroom more than not!! Thanks for letting me vent and I hope I can get some other info here. Anyone tried milkthistle? Anything positive out of taking it? My personal email is
[email protected] if you want to drop me a line to chat about the above...

Thanks again,
Rob
Posted 2/29/2012 12:35 AM (GMT 0)
Rob, thanks for reposting, and welcome to the forum! However, it would be better to start a thread of your own and introduce yourself and your situation to others here in that manner. You just click on New Topic instead of Reply.

I think it's probably the strokes and seizures that might contraindicate a transplant, not the drugs you are taking. Liver transplant is really a major surgery and they couldn't take the chance of your stroking out or seizing during surgery.

The good news is that you are not experiencing some of the symptoms that are caused by liver disease. However, you state that you haven't experienced confusion, but you are on Lactulose. Is that just because your ammonia levels were high?

You might want to see a hepatologist (liver specialist) instead of a GI, just for a second opinion and options for treatment. If you can successfully complete hep C treatment, most likely a transplant would not be needed.

My hepatologist had said that milk thistle won't do any harm but probably won't do any good, either.

I had a transplant 4 mos. ago and had never experienced hepatic encephalopathy (HE) or jaundice. Everyone is different.

I know you will get support from others here.

Hugs,
Connie
Posted 3/22/2012 7:29 AM (GMT 0)
I had a BRTO in October. I have 10 to 20% liver function and my ammonia levels are climbing. I went from 187 to 165 and my last test was 209. I suffered a horrible HE bout of delusion coming out of a 12 day coma. It was hell for ten days in step down and rehab. I am afraid my levels are nearing where I am in danger of more delusions or even a coma. I take 10 g Lactulose and 550 mg of Xifaxin. My GI said when I was at 187 & 165 my body had a high tolerances. But 209? My MELD is low, 15-20 Current meds with above, Propranolol 20mg, morphine 30mg twice a day (Severe Hip pain need replacement, now no way) xanax 1mg as needed. Vitamin D supplement & a multivitamin. I fear HE delusions or coma. Should I go to hospital and have my levels monitored & maybe brought down? Last month they found esophageal varices that were not there in October. I had the BRTO for I believe was Portal vein thrombosis. The Doctor said there were a nest of them. I appreciate any help or advise. I am quite frightened and I just hit 6 months of no alcohol consumption and would also like to know how I can go about getting a Certificate of Sobriety so my GI can put me on the list. I know I hit you with a lot. Thank you in advance.
Posted 3/22/2012 7:59 AM (GMT 0)
P.S. If the 10 g Lactulose is not helping me what increase would you recommend. When I was released from the hospital they said to put me on 20g Lactulose powder, I just discovered this today when I saw my primary and she gave me the news about the 209 level, so my primary wrote me a script for the 20g powder, but none of the pharmacists have it and they all checked with the manufactures they deal with and they don't have it. Should I just double my doses? I tried that after I got the 209 ammonia reading today and it seems to have me going a little quicker.

Also, I want to thank you Connie. You lived it and are giving back and I am so overjoyed I found a forum that I can come to and ask questions and maybe vent if needed. As we all know, each case id different in there outcomes, yet we battle on with the same ammunition. Remember everyone... Compassion is needed to heal the hurt of others.

Post Edited (HepCJohnny) : 3/22/2012 2:03:48 AM (GMT-6)

Posted 3/22/2012 12:14 PM (GMT 0)
Hi Johnny,

1.  Those are some high ammonia levels.

You can increase the lactulose as needed to help bring the ammonia levels down.

Some pharmacies (not the chain ones) have a hard getting special items. Try a pharmacy compounder...they mix and match custom Rx for their customers.  Check google for Pharmacy Compounders in XXXXX (Your city or town).  I've had to drive a bit for something special.

Some insurances think they know better about how much of a product for a patient. This makes me nuts, but your doc can over ride the insurance company and get the meds covered!

2.  RE:  low MELD score.  This is the good/bad news.  Though you have every symptom in the liver disease book, your liver is still WORKING some.  Hopefully your doc will get your meds organized.  Keep to the low salt, no red meat, lots of water (unless they put you on fluid restriction).

BTW:  For a patient with such high ammonia, you seem afraid, but in pretty good mental status.  Mike was out of his mind and couldn't find his keyboard for months at a time!  Much less put together a rational posting for this site!  So you MUST have a high tolerance for it.  After transplant, we have discovered that he has no memory of most of what happened the year before his transplant.

3.  6 months of sobriety. YOu say that you quit drinking 6 months ago. Did you go to a program? AA?  Rehab?  Maybe they will give you a discharge note.

My partner went to AA and brought one of those calendars wiht boxes for each day.  The speaker or his sponsor signed each day he attended.  In addition, his PCP had him come in for an ethanol blood test once a week for 6 months that showed 0% alcohol in his system.

He got his new liver 6 months and 2 weeks after his last drink!

By that time his MELD had come from 24 (still drining in September 2010) to 16 (3 months sober and they started his transplant evaluation).  It rose again to 22 again when they found a tumor in his liver.  Transplant May 1, 2011.

Ask your Pre Transplant Nurse Coordinator what documentation they require, then DO it while your MELD is low and you still have time before your liver becomes decompensated.

Best,

Carol

Post Edited (MamaLama) : 3/22/2012 7:25:49 AM (GMT-6)

Posted 3/22/2012 1:14 PM (GMT 0)
Carol,

Thank you for your quick response. I have been going to a AA meeting since my release from the hospital and had gone a month prior to my bleed. I failed to write that I code blued twice when they brought me in. I was set for a TIPS procedure then transferred to the hospital at the University of California in Irvine. I was very fortunate because they decided on the BRTO instead of TIPS which still leaves that option opened.. I had a 25% chance that I would survive, but as you can see it was successful. My GI told me to keep gathering the chips from AA so he could put me on the list. I never heard of a Pre Transplant Nurse Coordinator. Would I arrange that through my GI? Speaking of which, he has me set up for a biopsy on the 4th of May to see if I can get treatment for my Hep C while this is going on. My primary faxed over my latest ammonia levels to him yesterday. I hope to hear a response today. He is so busy that he schedules appointments once a week for his patients an his office overflows into the hallway and the wait is up to 2 hours. Then he is quick and abrupt. He is on the American Board of GIs as a consultant. Anyway, he had first wanted to do the TIPS and when I told him I had the BRTO he seemed unfamiliar with the procedure. It is fairly new and if you are unaware of it you can Google BRTO and the links show up. Anyway...

Would I be correct that the GI would set me up with the Pre Transplant Nurse Coordinator? I am on a restricted liquid diet. 2 Liters a day. I usually just drink Orange Juice. Is that okay and would that cause problems for me? Should I just go to water? It was like a kick in the gut when I received the ammonia score. I had fully expected it to be lower than the previous 165.

My primary fights for me. She got me the Xifaxin for free and will write what is needed for me. Some days I just have 2 BMs and others six. I just can't seem to get 3 on a consistent basis. I am exhausted and have been up from worry. Thank you for any help and advise you can give.
Posted 3/22/2012 1:28 PM (GMT 0)
Johnny, I had never heard of BRTO, but Googled it and see that it's an alternative to TIPS.

You can increase your Lactulose at will, as has been mentioned.

I was just placed on fluid restriction of 1500 mL a day. Tea, coffee, popsicles, juice, soup are fluids that are included in the fluid restriction.

You need to get hooked up with a Transplant Center. That is where you would see hepatologists and get evaluated for transplant. The Pre-Transplant Nurse Coordinator will be on the transplant team and guide you through the process, answer any questions you might have, set up appointments for you, etc.

Hugs,
Connie
Posted 3/22/2012 1:37 PM (GMT 0)
Johnny,

Good about collecting the chips.

Most of our members don't see a PCP or their GI doc once their liver disease gets bad. My partner switched from our local GI doc to a Hepatologist at a Major Medical Center known for its excellent transplant program.

Before that switch, Mike went to the community hospital with fever and somnolence (he had slept 23 hours in a row) and was diagnosed with sepsis secondary to End Stage Liver Disease...and put on 2 kinds of IV antibiotics for a week. Several things went VERY wrong during that hospitalization AND I found this site.

Several members recommended switching to a hepatologist. We had 2 major medical centers with transplant programs within 2 hours of our home -- in Orlando or Miami. It was 4.5 hours to Mayo, so that was too far.

We got an appointment in Miami within a month.

The GI doc was checking Mike's bloods but not escalating his care. The Hep in Miami wanted to keep Mike IN the HOSPITAL the day we arrived there and work him up, maybe keep him through til they got a liver, he was THAT bad...UNTIL MIKE ADMITTED HE DIDN'T HAVE THE 6 MONTHS SOBRIETY.

So, he was put into the Pre-Transplant program, had his bloods done monthly. He had 4 more hospitalizations in Miami where they started his work up as an inpatient. They could see he had quit drinking, was serious about his sobriety, and were wonderful with him.

As I said above, he got his liver just after the 6 month sober mark...and just in time. His liver was decompensated, he has Hep C, and a 2 cm HCC.

He still has the Hep C, however...as it is blood borne and will infect his new liver, so he is not "home free" by any accounting. His post transplant department sees him quarterly now and the hepatology department has him enrolled again...keeping an eye on the Hep C. His viral load is really high...hoovering in the 25Million - 50 Million copies each quarterly test cycle. That will have to be addressed (again--failied treatment in 2003).

Keep us posted. I am not sure where the best transplant center is in your area, but I'd switch over there if I were you and your insurance would cover it.

Carol

Post Edited By Moderator (hep93) : 4/6/2012 5:34:35 PM (GMT-6)

Posted 3/22/2012 2:10 PM (GMT 0)
When I was having problems with HE, taking more lactulose helped immensely. You won't od from taking more of it. Some days I'd take a couple of extra doses (30cc.each) when the fog rolled in. Sitting on the toilet most of the day stinks, but it's better than feeling out of it.
Posted 3/22/2012 10:04 PM (GMT 0)
I was feeling my GI was not doing all he could do and asked my primary for a referral to a hepatologist and I am going May 9th. He is out of Pasadena. I have noticed most of the hepatologists are close to Los Angeles, so I can only conclude a major transplant center is there. No doubt USC or UCLA or if I am lucky UCI where I was when I was in my coma. My wife is going to my doctor as I type to get the wheels in motion to get approval on more Lactulose. I am on 10 g/ 15 mL. I am on Medical and they are usually good when my doctor signs a pre-auth.

I will start drinking a lot more until I am going 3 times a day. I truly have been sober for 6 months and because of the horrific delusional state I was in (they almost put me in a straight jacket) any cravings I once held for alcohol are gone. I want to have a fighting chance like all you have fought. I am so thankful for finding this page. Your advise and the roads you have traveled have is helping me immensely.
Posted 3/23/2012 1:31 AM (GMT 0)
Johnny , Get all copies of your records from the G.I and a sponsor or a spokesman from AA to confirm you meetings . Simply relying on your G.Is nurse or assistant to fax copies over isn't enough , Trust me , Something always get lost in the fax process . Get a file folder and keep your records in there . I don't know they will push the issue of verified sobriety but in my case they did , And it had to be documented . A list of past and current medications will help the process along also . It best to walk into that Transplant clinic with your guns loaded for bear , It shows you are interested in fighting this disease , and that goes along way with doctors .
As others mentioned the Lactulose is your best defense with ammonia levels and the Xifaxin complements it very well . I know things are pretty tough at the moment ( Been there ) but you sound as if you have what it takes to make it . Keep focused on today and you'll be alright .




A. Ziffle
Posted 3/23/2012 4:31 AM (GMT 0)
I am already having all GI records, hospital records from when I was in a month. All subsequent procedures from my GI sent to my PCP so I can go to the hepatologist with a dictionary of info. Including notes where my GI wrote I needed to be on the transplant list after the 6 months. Now I don't know if he was going to hand me off to a hepatologist at this point or if he is connected with a transplant center. I am hoping to go to USC, they are a transplant center. My friend is on the same floor as liver patients. He has Cystic Fibrosis. I looked them up on the internet and they seemed to have their crap together. I would guess the hepatologist I am seeing either works there or has doctors he would refer. Right I am going into operation "Lactulose drinking fool"! :) I will try and go all out for 2 weeks and then I will be blood tested again. Fingers crossed!
Posted 3/23/2012 2:55 PM (GMT 0)
Johnny,

Glad to hear things are "moving forward" and you are likely "moving" as well...with Operation Lactulose unfolding!

You can look your Hep Doc on Google too and likey see if he is affiliated.  That world is pretty closed...they all know each other from conferences I think. 

Keep us posed on how things are "going." 

Carol

Posted 3/30/2012 2:53 AM (GMT 0)
Believe me there is nothing wrong with venting.  There are times when I just want to scream.

My situation is somewhat similar; I had the TIPS procedure performed in December,2011.  They put me on Lactulose, my blood sugar went crazy.  I took myself off did some research through this site and I am now on Xifofan(sic), very expensive stuff.  My ammonia level a couple of weeks ago was at 73, with all things considering, that is pretty good.  I am sure your husband's condition is alot worse than mind, but maybe this is something you should run by your doctor.  When I introduced this new med to my doctor, he read everything about it and didn't think twice. 

The doctors say I am stage 3-4 Cirrohsis and a candidate for a transplant; supposedly it was brought on by autoimmune-Lupus/SLE/Schleraderma and medications (Lovastatin and Cymbalta, etc).  I had not had a drink in 7 years prior to my dx.  yeah

Posted 3/30/2012 3:01 AM (GMT 0)
Rob

Gosh I freak out when my ammonia reaches 89! 

Rifaxin should do the trick.  I am taking 550 without the lactulose, but of course that's up to your doctor.  I can't do lactulose because I also have Type 2 Diabetes smhair

You will be in my thoughts and prayers.  We have to keep on fighting.

Posted 3/30/2012 3:18 AM (GMT 0)
Hi Johnny,

When I pick up my Lactulose from the pharmacy, it is already pre-mixed in half gallon jugs.  So you just take your little plastic server until the next dosage. 

But I don't take the lactulose anymore because of my diabetes.

Google all the pharmacies in your area. 

Posted 4/1/2012 4:07 PM (GMT 0)
I am very lucky. Strong heart and kidneys and no diabetes and I do take the 10 GM/15ML premixed Lactulose. @ Serious... 89 is within normal ranges. Which is 27-102 so I don''t get the freaking out. No offense, but your post was useless. Sorry if I am in what might be considered a symptom... MOOD SWING! Actually my thoughts are quite clear. I take the 550 Xifaxin and from what I was told it has nothing to do with ammonia levels. It just helps keep the (HE) events down by up to 50%. Anyway... I have a question. I have increased the Lactulose (double) and no speedy rush to the rest room. In the morning I will have one movement like every other day. However. When I finally do go (mid afternoon) I have multiple BMs. What I mean... First BM significant. 2nd BM 10 minutes later... significant and same with the third another 10 minutes later, significant. I actually feel lighter by 10 pounds!! And then bouts of diarrhea 3-5 for around a 15 minute period. This pretty much sums up a typical day. The question is; Are my BMs considered separate because they are so close in time, or is each BM just that... A separate event? Thanks... my fogs seem to have been in check, but I don't know if that is just me hoping. I go for blood work this week and if I don't drop from 209 I seriously will feel a kick in the balls delivered by a Donkey!
Posted 4/1/2012 6:02 PM (GMT 0)
Johnny, as far as I know, each BM is counted separately, no matter how close together they are or of whatever consistency.

While Serious's post may not have contained the info you seek, saying it was "useless" is bordering on bashing...which is against the rules. We want members to feel free to post without fear of their posts being considered useless, misinformed (I've seen a lot of those), or just plain pointless.

Hugs,
Connie
Posted 4/1/2012 8:42 PM (GMT 0)
I get the bashing part. But I would encourage people to read the whole thread before opining. These are serious matters. I promise, no bashing was my intent. Apologies... I find this forum and your knowledge in particular extremely valuable and you ALL have helped me in different ways.
Posted 4/1/2012 9:14 PM (GMT 0)
Thanks, Johnny.

Hugs,
Connie
Posted 4/6/2012 11:24 PM (GMT 0)
Well I am proud to report that "Operation Latulose" was a success! After cutting my protein intake to 40-50 (checking every label) and doubling my Lactulose on some occasions... My blood test I took Wednesday came in today. I went from a brain fogging, coma threatening and down right scary 209... to a "happy to meet you" 114!! I also found a Pharmacy Compounder (Thanks Mama Lama) and fought for the last week and got approval for free packets 20g powder Lactulose. It's on order and I pick it up Monday. I shall be back keeping you guys updated and asking questions from all of you... the real people with the "human" answers and not the clinical answer that is spoken in almost robotic terms from our doctors. HAPPY EASTER... HAPPY PASSOVER.... Or if you are flying solo... Have a great weekend!!!
Posted 4/7/2012 12:18 AM (GMT 0)
Fantastic news, Johnny! That's quite a drop! I hope you get the Lactulose packets SOON.

Big hugs,
Connie
Posted 4/7/2012 12:39 AM (GMT 0)
A lot of people here complain about the taste of lactulose, but it's a lifesaver. Feeling out of it, or goofy stinks. Take the lactulose and if you can get it, xifaxin.
Posted 4/7/2012 5:19 AM (GMT 0)
The med that is used in conjunction with Lactulose is Xifaxan (brand name.) Generic name is Rifaximin.

Also, when obtaining copies of labs, scans, doc visits, etc., order copies for yourself. Copies are not always forwarded to your doctor, to the transplant center, or to a responsible 3rd party involved. You need to contact Medical Records and sign a release for them to be sent to you. Then make copies for your files and send the originals to doctors, transplant center, etc. I had this happen when I was being evaluated for SSD and turned down. I obtained copies myself and sent them to my lawyer fighting my appeal. I found that they were stacked on top of his bookcase and never sent to the SS office. When he was fired by the group he was with, I got my approval from SS in very short order. The release of records paper had been signed multiple times by myself when I first went into the lawyer's office, but he never sent it with the records to SS. Pure laziness.

Hugs,
Connie
Posted 4/7/2012 4:08 PM (GMT 0)
My PCP is a saint! She had a member of her family die of liver disease and every specialist I see my PCP has me ask them for a release form to be sent to my PCP. She is the holder of "the papers"! Every denial, Xifaxin, and now the 20g Lactulose powder from the insurance company she has gone to the mat for me. She was not aware that a hepetologist instead of a G.I. was needed as far as getting on a list or how that process worked. I told her the information you good people have given me and she referred and got me an appointment with a hepetologist and when I walk in there I will have everything from the moment the ambulance picked me up half dead from my bedroom. I had bled out so much... while I was hospitalized my wife had to throw out our bed and hire some sort of Haz Mat clean up crew to sterilize the room and get new carpet because I had bled so much. Again everyone... THANK YOU!!!
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