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Posted 4/7/2012 4:27 PM (GMT 0)
HCJ,

When is your Hep Appointment? Hope they get you into a program fast!

Keep us posted.

Carol
Posted 4/7/2012 10:12 PM (GMT 0)
Carol, he had said on the previous page that his appt. with a hepatologist is May 9th.

Johnny, that's great that you have a PCP who goes to bat for you. But I still think you should have a copy of your own records. They usually charge the patient anywhere from $1.50 to $2.50 a page, depending on the facility. With all those I've obtained, over the past 10 yrs., the price has risen, but still worth it. I request exactly what I want, such as labs from a certain date or hospitalization on certain dates.

Hugs,
Connie
Posted 4/11/2012 3:44 PM (GMT 0)
I can get everything from my PCP printed for free. I go to see her in 3 hours and I'm going to be asking her about gathering all paperwork. As far as seeing the hepatoloist I feel like I am way behind which is upsetting. I Google some of the sights on liver disease and it can get you down right depressed. Especially when they have named all the events that have happened to me and life expectancy without a transplant. For example... I did not have Esophageal Varices. Mine was in my stomach and I bled out through my anus, they used 27 liters in 32 hours before inserting a balloon. Anyway, now I have Esophageal Varices which I did not have. They consider an Esophageal Varices bleed worse than a heart attack as far as getting to the hospital. ***...

So... Depending on what study you read... there is great hope or it's a coin toss to make it a year. I'm coming on month 7 and no pre transplant talk or sense of urgency from the GI. Before you write it, I understand... squeaky wheel. I'm just confounded that the time that has passed where I am just sitting is acceptable. I know, WAKE UP, this is the world we live in. Accepted. I just don't know how ballistic I might go if this hepatologist gives me a song and dance. Should I march my ass to a transplant center? Seriously, would I be rebuffed? It's obvious my Portal Hypertension is not handling the blood and toxins causing the Esophageal Varices.

I know this post is one big complaint... And you ALL have serious issues too. But talking to people who are not living this is useless and basically I'm just not in a good mood after Googling some of the 26 opinions on study group A who died at a 27% rate vs Study group B who ate a ham sandwich daily. PLUS! I can't get my specialist (GI) or his busy staff to give me basic answers on my condition. This forum is great and has helped me so freek'en much I can't explain. HOWEVER... GI Johnny and his staff know MY particulars and I want a straight answer. Okay, it's almost 9:00 am... You all have read enough of me whining. In 20 minutes, could be an hour and 20 when my GI opens, I am calling and DEMANDING pre transplant procedures to be started immediately. What can they do? I'll tell you. They will get Dr. God on the phone and he will explain to me where the hell I stand and why I am learning that I needed to be seeing a hepatologist months ago. Okay Rany/over. Thanks guys.
Posted 4/11/2012 4:10 PM (GMT 0)
Johnny, I understand your frustration. I don't know if your GI doc will refer you to a transplant center or not. You might have to go through your PCP. When I went to Mayo I first requested an appt. online. Someone called me and got some basic info and I then got an appt. to be seen by a Mayo hepatologist. I believe you are overseas. and I know things work differently under socialized medicine (or whatever the term is these days.)

I would advise you to stay away from most sites online, especially the studies. Get your info from reliable sites such as this one or the American Liver Foundation. Always remember that each person is different and each case is different. However, given the bleed that you had and the ESLD, you most likely are looking at a transplant. Pre-transplant evaluation should be started at a transplant center ASAP.

Great that you can get copies of your medical records from your PCP. I think it's important for the patient to have them. In this way, you can also track your labs from one week to the next (or next time drawn) and get a basic picture of what is going on with your liver.

You really have to be an advocate for your own health care these days (that squeaky wheel again.)

Hugs,
Connie
Posted 4/12/2012 6:45 AM (GMT 0)
When you say overseas are you saying not in America? Or are you overseas from where I sit being in America... LOL. We don't have socialized medicine. We have a mess! I am in a HMO where everything must be approved before done... Unless an emergency. Thanks for all your advise Connie... Helpful beyond you can know.
Posted 4/12/2012 12:54 PM (GMT 0)
Johnny, I'm in the USA, too. Don't know why I got the impression you were "over the pond." You are right about HMOs being a mess. When I first went to Mayo, I had just received Medicare and signed up for a supplement (HMO.) Mayo informed me that they don't take HMOs and couldn't treat me. (A large part of this is that they want to do everything onsite, without getting referrals from the HMO. They act fast and don't want a middle man.) Since I had just signed for the supplement and it had not yet been processed, I called that company rep from Mayo's lobby and told him to drop that coverage...do not enact. Everything I've had done since then (2006) has been at Mayo and covered by straight Medicare with Medicaid Medically Needy as a secondary. What these insurances didn't cover, Mayo's charity fund paid. So far, so good.

Now I'm off to Mayo again for an appt. with my surgeon.

Hugs,
Connie
Posted 4/18/2012 2:17 PM (GMT 0)
I am new to this forum. My step dad has Hep C and Cirrosis. He went through treatment for 6 months but it was unsuccessful. He applied for a test group for new treatment but was denied. In the past several months it seems to be one thing going wrong after another. He's been in the hospital twice with pneumonia, lung infection, sepsis, etc...this last time he had accumulated more than 50lbs of water weight and is now on Lasik(sp) treatments. He has been told that he needs to be put on the transplant list for his liver, and is in the process. Now the latest complication is high ammonia levels, which are causing lack of sleep, confusion, and his hands shake. The confusion is difficult to deal with because he swears he's not confused, but to others it is obvious that he is. This makes it hard for my mom to convince him to take certain medications, and when health care providers call with information he insists on speaking with them on his own and not letting my mom talk with them to make sure she gets the story straight. He's generally a very sweet and easy going person but has become quite obstinate lately. I'm wondering if we can expect problems to continue to arise like this, and be spending a lot of time in and out of the hospital. And also, what kind of a chance he has of being approved for a new liver since he has been so sick and has Hep C that was not able to be taken care of with treatment. My mom is not one to get on the computer and research, and is very stressed right now. Any advice I can get here to pass along to her would be greatly appreciated.
Posted 4/18/2012 3:31 PM (GMT 0)
My Step Dad,

It is important that you have found this forum.  It can help you so much.

What you need to do is cut and paste your post (Just like in word processing) into a NEW Topic.

Call it something like:  "Newcomer:  Step Dad with Cirrhosis, We need help!"

Then more folks will find it and post their thoughts.

But here goes from me.

I have been coming to this site since the fall of 2010. 

My partner, Mike, was about in the same shape as your step dad.  Just change the name and the case is the same!!!!!

His liver was decompensated, he was sick as a dog, he was in and out of the hospital every month and we got a referral to a major medical center that does transplants -- Jackson at U Miami Medical School.

They do more multi organ transplants than any other, are 2 hours from our home and have treated him with kid gloves since he arrived there.

Mike's problem was not only that he had every symptom in the book, but he was still drinking alcohol.

OH NO.  You have to be 6 months alcohol free (with documented treatment program -- AA, counselor, rehab, etc) if you are an alcoholic.

The Hep doc at Jackson put his hand on Mike's knee on October 17th (I remember the exact date in 2010.)  "Mike, you won't last til Christmas if you drink another beer!"  3 months.  PUt your affairs in order!  GASP.

Well, he had quit drinking in September, but that didn't count.  Only the days the AA sponsor signed his calendar.

The race began. Manage his symptoms.  Go to AA many times a week. Time in hospital.  AND THE CRAZIES.

I know too well what you are talking about with the obstanant negative behavior. He made me cry at least once a day, and I am a strong woman.  He didn't want anyone to know he was sick. To look at him, you thought you should call an ambulance every day of the week.

One thing I am concerned about in your post, is hubby's wanting to control the information he is getting from his doctor.  It is important that someone be his advocate as it is likely he will become more ill over time and someone may need to manage his meds, keep his prescriptions in order (Mike was taking 15 meds on various schedules and he was so loony he couldn't get it right...dumped all the pills together and surrendered one night...that was a mess to figure out).  Mike was unable to unsnarl problems at the pharmacy, keep the appointments straight, sort out messes with the insurance.  He will need help.

I also worry about one more thing:  DRIVING.

Mike was determined to deep control of his driving priviledges. But he started driving crazy...saying he was going to show this one or that one a lesson. Swerving into lanes, stopping on a dime to give them a "break check."  At first He wouldn't hear of stopping driving.  That was when I told him he could drive if he liked, but I wouldn't drive with him. I got a lift or drove another car. Finally the doc took the keys, told him he put the no driving rule in the medical file and if he did drive and got in to a wreck the insurance wouldn't pay. I dont know if that is true, but he gave up driving for over a year that day!

Now he is fine, drives perfectly. The crazies went with the bad liver. They were much improved along the way with lactulose and xifaxan. Be sure to get prescriptions for those.

One of the moderators will be along to welcome you. don't forget to start a new thread.

Carol aka Mama Lama

 

Post Edited (MamaLama) : 4/18/2012 12:28:43 PM (GMT-6)

Posted 4/18/2012 7:09 PM (GMT 0)
Hello, Mystepdad, and welcome to the forum. ML/Carol has given you a wealth of information. At this point, it is very important that your SD be prescribed Lactulose. That will remove the toxins from the brain through bowel movements and take care of "the crazies." If that isn't working sufficiently, Xifaxan may be added. This may be the time for your mom or you to get Power of Attorney or Medical Advocacy over your dad, so that one of you can get info from the doctors. As Carol mentioned, he is not going to be able to get things straight.

Being ill and not responding to hep C treatment are actually good reasons to be listed for transplant. He will go through an evaluation process at a transplant center first. They will check him out thoroughly to make sure there are no serious cardiac or other problems that would interfere with transplant.

Meanwhile, he needs a diet change. If he drinks alcohol at all, he must stop completely. First, because it's horrible for a diseased liver and secondly because he won't qualify for transplant if he's drinking. Red meat should be removed from his diet (difficult for the liver to process) and fresh fruits and veggies increased. He should check out other sources of protein such as beans, eggs, soy products, fish, and dairy. He should drink spring or filtered water. If he takes a multivitamin, it should NOT contain iron.

I suggest you read the info in the folder at the top of the page entitled Hepatitis Resources. You will learn a lot there.

Finally, do start a new post. You do this by clicking on New Topic instead of Reply. In this way, more people will read your post and get to know your situation.

Again, happy that you found us.

Hugs,
Connie
Posted 4/22/2012 4:51 PM (GMT 0)
Hey MyStepDad... All great advise. I would add that you never mentioned Hepatic Encephalopathy. All symptoms you described point to that and Lactulose and 550 mg of Xifaxin not 200 will get him out of it with a super easy to process low protein diet. I am talking 40 grams per day. I suffered the worst delusions imaginable when I got out of ICU and trust me, even after I leveled off the delusions were so real my wife is still telling me, 6 + months later that events I thought happened in the hospital, actually did not occur. This comes up in casual conversation. I thought up to a week ago that they moved me to another room every day. Nope! Same room the whole time. I looked at my wife and said, "Really"? And my daughter chimed in with, "Yes Dad, you had 2 rooms, ICU (12 days) and step down ICU". So, your Dad may seem crazy... But trust me, he is believing every aspect of the delusions he is suffering because of most likely untreated high ammonia levels. I actually find it shocking you not mentioning Lactulose in your posts. Are you seeing a specialist or just an M.D.? Okay enough from me on that. If you took the advise of the people above me, you have no doubt started a new thread and hopefully the answers you need.

Question. I need to make 3 bowel movements in a day. However, no matter how much Lactulose I take it takes some times all day and when I do go I will have 5-6 BMs in a half hour period. Is everyone different with their time frame from Lactulose intake to evacuation in the bathroom? And if I hit my 3 BMs in a half hour period am I good to go as far as my ammonia levels? I am now or my last test was 114 and I go for another test this week. If I maintain or drop, I guess I am good to go with the status quo. My question... BMs are not happening after every meal, but I do get there with the total by days end. Good? Odd? Are we all just different? Thanks! Also... if I have an event at 11:00 am... Because I can not predict the Lactulose and its effects, I just don't eat and do not take the Lactulose. I just take my Xifaxin and other drugs. Or... If I have something going on in the evening, I take extra doses to make sure I evacuate so I am good for the evening. What a juggling act. But the reality is... I have no true schedule and it's frustrating. I ramble. Back to original question. 4, 5, 6 BMs in a half hour good for the day?
Posted 4/22/2012 5:19 PM (GMT 0)
Johnny, it sounds sufficient to me. As long as you don't have the crazies (and you don't sound like you do in your post), then when your BMs are or their frequency isn't something to be concerned about. It sounds like 4-6 BMs in a day is working for you.

Hugs,
Connie
Posted 4/22/2012 6:28 PM (GMT 0)
I've mentioned this several times in my posts...but this might help the newer caregiver members...when Mike had HE really bad, and was acting the worst...well those episodes are completely gone from his memory. He has amnesia for almost a years of his life! We had out of town guests, come to "say goodbye," and he doesn't know they came. Etc. But he's good now, post transplant.

Carol
Posted 4/22/2012 7:56 PM (GMT 0)
"(and you don't sound like you do in your post)"... Connie, not understanding that comment. You know comments can be lost in translation?
Posted 4/22/2012 8:51 PM (GMT 0)
Johnny, I was saying that you don't sound like you have HE; i.e., "the crazies" in your post. wink

Hugs,
Connie
Posted 4/22/2012 9:40 PM (GMT 0)
I was going to post the same...that your posts seem very well stated. ML
Posted 4/23/2012 2:07 AM (GMT 0)
Johnny , What you need to have is at minimum 3 bowel movements a day while taking Lactulose . Anything above the 3 is fine as long as you maintain the 3 . There has been times it hit me quickly and times it took forever to kick in but the end result was always the same , Often uncontrollable panic runs to the restroom .
Balancing act is the key word , Once you find the proper mixture of diet , meds and light exercise things will tend to go back to normal ( Well ... a lesser form of normal ) . For me I also found that focusing my attention on hobbies or just keeping myself busy seemed to relieve most of the stress I felt , If you get bogged down in a mental rut things can spiral out of control . Good to see you back again and passing on your experience to others .


A. Ziffle
Posted 4/23/2012 2:32 AM (GMT 0)
When I was using lactulose I had a new hobby...using more toilet paper than my girlfriend.
Posted 4/23/2012 3:59 AM (GMT 0)
Yes Connie... I feel clear as a bell and this board along with you has been my saving grace. Very funny David, I share that new hobby. A Ziffle I can relate to your post. Having drank the Lactulose after a couple meals and nothing happening there is a certain panic that one can feel, and yes the dash to the restroom is one of panic and relief. So I am correct in balancing my days? What I mean, morning meetings, skipping meals and Lactulose, Evening meeting, working overdrive to, as I like to say... Evacuate taking the Lactulose needed. I do indeed need to exercise. I seem to lose hours to my writing, reading and trying to give each day my every breath to be around a long, long time!
Posted 4/23/2012 3:11 PM (GMT 0)
Johnny , If it works for you I'd say keep it up . I would not however take any meds on a empty stomach , Even vitamins tend to make me nauseous if I have nothing on the stomach .
David and I both have exchanged some horrible experiences with the effects of Lactulose , Pretty funny in HIND sight . Just in case you haven't figured it out yet , using medicated wipes is the best way to " go " .


A. Ziffle
Posted 4/23/2012 8:25 PM (GMT 0)
I thought pigs wallowed in that stuff...
Posted 4/23/2012 10:52 PM (GMT 0)
David , Ever seen a pig with wrinkles , Not fat rolls but wrinkles ? We are currently testing a new facial creme and as a company spokes hog I would like to offer you a lifetime supply ( Non returnable ) of this new product . It is all natural and eco friendly ( Special muffler system we use ) , Yes " Piggy Poo " is for you .

Disclaimer : The makers of " Piggy Poo " are not responsible for damages resulting from loss of friends , family or lack of social invitations due to our all natural fragrances .


Yours truly ,
A. Ziffle
Posted 4/23/2012 11:28 PM (GMT 0)
That's why cracklings don't have wrinkles. You learn something new every day.
Posted 4/24/2012 5:20 PM (GMT 0)
HepCJohnny,
Sounds to me like the lactalose is working for you okay. When I was caring for my hubby at home, I could tell when he started to not making sense, so I upped the lactalose (and gave him milk shakes) until POOTIME happened. It was a balancing act. Anytime we visited the Dr. and hubby wasn't clear headed, Dr. told me "more lactalose, you can't OD him." So I did, and it worked. The BMs were never regular. We couldn't count on when they would occur, no matter how regular I kept the meds.

Now that he is a nursing home, they are very regular with the meds, and need permission to up the lactalose (from Dr.), so he often goes a day without BMs. Then he is rather "crazy". When I notice his breath smells like ammonia and he doesn't make too much sense, I request more lactalose for him. There at the NH (we call it the B & B), they can't really tell if he has the 'crazies" because so many of the folks are so drugged up or "not right" mentally, they can't tell. As far as his "reported BMs", they depend upon him to report and many days he can't recall which way to the dinning hall, let along if he pooped that day. So this is a negataive of the B & B. When he was home, I was with him 24/7 so knew for sure. But, as far as regular. Oh no. And, Dr. said doesn't matter when he poops 3 x, just so he does. Poops can be within 5 minutes and our Dr. counts it as another one.

Hope this info helps in some way.
Angie1953
Posted 4/25/2012 9:06 AM (GMT 0)
Helping qualified patients receive Salix products

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Cheers!
Hector
Posted 4/25/2012 2:10 PM (GMT 0)
I just received my SSI, my check is 1,700 and I was receiving medicare with zero co pay. Now with this new income our income at home is now 3,400.00 and they hit he with a medical deductible of 2,370.00 dollars! We wouldn't be able to pay for rent or food!! This goes into effect May 1st so yesterday I scrambled to see all my specialists and my PCP to get scips I will need. I had one more refill do NOW for my Xifaxin 550 mg. They are now busting my chops saying they need pre auth from my PCP denying me my last free scrip which I am entitled to. MY PCP and her staff started working on them yesterday. Hopefully I can get this last bottle. My question. I went to an Xifaxin 550 mg discussion board I found online. Some people said they stopped for 6 months and started again. Is that viable or something any of you have heard? I am lucky that my wife's work is having open enrollment for health insurance and I could be covered in July if I sign up in May. So if I do get the Xifaxin that is due me in May I would have to pay their crazy price just once in June. She has Kaiser and her work also offers a PPO. Has anyone had dealings with Kaiser? They seem too corporate and bottom line driven, where a PPO could give me the luxury to keep some of the doctors I trust and have a say in my per transplant treatment. Or have any of you had Kaiser? Also, does preexisting condition put me in a 6 month holding pattern? Or are these questions best answered by Kaiser or the PPO? And does Kaiser even have a transplant department or do they farm it out? I guess I'll find out. It just seems the people here have a true perspective on the crap we all go through. I had a biopsy scheduled for May 4th... I called the GI (staff member) and said cancel it if he could not move it to this Friday. I told them I would go in for the 48 hour labs today which my PCP got signed for me so all blood work he required would be done so he could proceed on Friday. I'll hit the lab today. My original date was this Friday by the way, and they bumped me. I was also able to get my hepatologist to move our date from May 9th to the 30th. All my scrips are filled except the Xifaxin. Sorry so long... Thanks.
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