gastric varices/stage 4 cirrhosis

Hello everyone, bless you guys. Could anybody tell me about bleeding from varices. My wife has gastric V and we are about 15 min. from a small hospital and are members of airevac that can get her to a larger hospital 45 min. away by car. Our local medical team is aware of her condition and if they get that call they will start the helicopter asap. What can I do before anyone arrives beside try to keep everything as calm as possible? What is involved in banding? We are meeting with an endocrinologist this month to handle her care in this case, but again he is 45 min. away. If it was possible I would move us across the street from a major hospital, but... I know that there are many variables to consider but just some general info from someone who has been thru this will be helpful.
Praying for everyone here. Turfdoc.

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Hi Turfdoc,

I have esphigial varicies (in my throat) These have all been sucessfully banded. After several trips to the hospital via ambulance and several pints of blood. Banding is (think of a zip lock bag where the seal is not shut completely and you have stored spaghetti sauce in the bag. You go back and seal the bag so it doesn't leak) for lack of a better example.

Endoscopies are completely painless, well mine are. Now that the varicies have all pretty much healed, I go for an endoscopy every 6 months to check on these. So far so good for me. Yayy.

My meld score, like your wife's, is also a 4. She really has to follow the doctor's advice relative to taking care of herself. I am so lucky to have such a fantastic Liver Team at UMass in Worcester, MA. and a great support system in my family. The only reason that I'm still on the liver transplant list is a "just in case" reason. I am more active now and happier than I've been in quite some time.

I wish you both the best.

Oh, check out NAIDW . org. They help people like your wife, she should be considered disabled soon, if she is not already. NAIDW offers grants that help people like me with a bill or two. These are made directly to the vendor. They paid 500 towards my car insurance. There is no fee to apply and it's so painless. I volunteer for them by soliciting large to medium sized companies for donations. Anytime that a fee is involved...run.

Along with an arms length of medications, I take a lot of vitamins. Ask her doctor about calcium and her bones and teeth. I wish someone had told me about the effects of liver disease and your dental health.

I'm also taking prenatal vitamins for my hair and nails.

You just being there for her is so fantastic. My BF thinks it's a chore coming with me! I do plan on making some life changes in the next several months.

I did this to myself (cirossis) and do not want or need sympathy. I live an hour away from my hospital. At first, I was just 15 minutes away. I moved to get myself out of the temptations of friends who were also alcoholics.

I let myself get to the bottom of the bottle and ostracized myself from everyone except the abusive bf. My life has changed for the better since I stopped drinking. I also see people for who and what they are. I can't stand being around drunks, now that I see things more clearly.

If your wife's doctors prescribe sleep aids for her, just watch her. I took an Ambien and woke up in my car crashed into a ditch on the side of the road. I have no memory of leaving the house. I hear horror stories about what the drugs to help with insomnia do to people.

Lisa

I have not touched a drop of alcohol since Mother's Day of 2010. After doing a lot of damage to my family, friends, co workers, etc. I live with regret every day.

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Thank you Lisa, especially about the vitamins. She is considered disabled from some botched back surgeries in the past. We might have to check on that website on our bill issues. We are going to the Mayo clinic in Rochester and coordinating care here with our family doctor. I tabulated her MELD score at an 8, but have not been officially told by a doctor. I hate this disease and all that comes with it, she has NASH hepatitis as well as diabetes. I hope your BF has a change of heart. We do not have any family support and just some surface support from our small community. Thanks again for your support and answers. If I can do anything for you please let me know. I am glad we are on this site as it has helped beyond words.
turfdoc.

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Hi Turf Doc,
I also have stage 4, and have had 5 bandings, so far. I've never had a bleed. My Dr. also checks by EGD every six months. If he sees one he'll band it during the EGD. I was put to sleep for every EGD, so I didn't feel anything. The only time I felt bad after was the time he banded three at one time. It wasn't too bad, but I did vomit a lot. A clear EGD will give you, and your wife, some peace of mind.

Best wishes,
Darlene

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Hi my dad has gastric varices too . Dr. cant do banding in his gastric varices instead they did a procedure called BRTO which is sclerosing of varices in his gastric but was not able to shrink all of the varices now we are waiting for him to have TIPS procedure to decreased the portal hyperstension that causing varices and bleeding. Hope everything go well for your wife. God bless your heart

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Hey dg, thanks for the reply. Where are your varices? My wife's are in her stomach. I am worried too that they might not let her have a transplant if and when she needed one. With so much going on just would really like some peace of mind for once. I am glad that you are doing well. Thank you again.
turfdoc.

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Oh boy, I hurt my back one time in my life and it was terrible. So suffering constantly must be awful. That poor thing. You sound like you have things pretty much in control.

I will help you with applying for NAIDW. I was so sick from worry about paying the car insurance. I know the burden that was lifted off my shoulders and where I volunteer to find grant money for them, I have a little pull lol. I haven't had my Meld test results lately.

I hate this disease also. Although, I do believe that things happen for a reason. I help out the elderly in my area with SSI, SSDI, Medicare and Medicaid forms. So many people are not aware of the programs that are available to them. The reason why I know A LOT about these programs is that I was beaten up pretty badly by these agencies. They try to frighten and intimidate you. I have always been outspoken, so I use this strength to its fullest.

It's a shame that you don't have family support. We can be your family. :-) I'm going to create a chatroom tomorrow in Paltalk. I just have to figure out what to call the room, ALF? I need a place that I can go and talk to people who are in the same situation.

Here is a list of my meds. At first, I was like are you kidding? Just so you know what to expect.

1 ACETAMINOPHEN-COD... 6
2 ACYCLOVIR 400 MG ... 15
3 AMITRIPTYLINE HCL... 30
4 AMOXICILLIN 500 M... 28
5 CITALOPRAM HBR 40... 30
6 CYCLOBENZAPRINE 1... 60
7 FISH OIL 1,000 MG... 30
8 FUROSEMIDE 20 MG ... 30
9 GABAPENTIN 300 MG... 60
10 LACTULOSE 10 GM/1... 255
11 MIRTAZAPINE 45 MG... 30
12 NADOLOL 20 MG TAB... 60
13 OMEPRAZOLE DR 20 ... 28
14 POLYETHYLENE GLYC... 527
15 QUETIAPINE FUMARA... 30
16 RA B-COMPLEX WITH... 30
17 RA CALCIUM CITRAT... 100
18 RA VITAMIN E 400 ... 30
19 SPIRONOLACTONE 50... 60
20 TRAMADOL HCL 50 M... 30
21 TRAZODONE 50 MG T... 60
22 VOL-PLUS TABLET 90
23 ZALEPLON 10 MG CA... 30
24 ZINC 50 MG TABLET 15
25 ZOLPIDEM TARTRATE... 30

Be careful with Zolpidem (Ambien) It makes you take your clothes off when your best friends come over.. ugh.. lol

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Hey Jim, thanks for the information. I will check that out and find out more about it. I hope your father is doing better and he and you will be in my prayers. Really appreciate the post.
turfdoc.

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Lisa, that is an impressive list, my wife's is nearly as long. Right now we are above water with the money, but I will certainly keep your offer on the table. Thanks for that. I have gotten more support here than I have from my family in 18 years. I still have problems with putting myself out there because of always keeping things to myself. You definitely sound like a woman who can take control in a way that does not offend. That is an art that I wish I could master. Thank you for your concern and willingness to help. Bless you and everyone here.

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Actually, gastric varices are not that bad. They rarely bleed. Your Dr. should probably have her on something like Protonix. You're in minnesota, as am I. The care here is pretty good for cirrhosis, unless you live in the Northwest quadrant. I'm in Minneapolis, but have thought about checking Mayo, just to see if they would change my care and how. The drawback to being in minnesota is that it one of the most difficult to get a transplant. You have to have a pretty high meld just to get on the list. Mine is 12, and my Doctors at the U tell me I'll probably die from something else before I'll die from cirrhosis, if I keep taking care of myself. I think 27 is the average meld of people who get transplants in this state, while in Texas it's something like 10. There was just an article in October's Scientific American about the inequities nationwide in the transplant system.

Lisa is right about the vitamins, they are key. The bulk of what I take each day is vitamins. The only drugs I take related to cirrhosis are nadolol and protonix. The nadolol is to try to keep my portal vein pressure down. Which apparently higher than any the U clinic has seen. The protonix is for the gastric varices. I have a new hepatologist (my old one who I really like moved to Chicago, without even asking my permission) and she's the one who prescribed the protonix. I was on it once before before for a H.pylori ulcer, which is since gone.

Two and half years after quitting drinking I had an episode of esophageal varices bursting. Two at once. I threw up more blood than I thought I had in my body. Since it was 3 in the morning, I went back to bed, got up at 6 in the morning, and threw up a couple more buckets of blood. Then I went to the hospital. When I told my regular Dr. about that, he said I'm an idiot. That's when I found out I had cirrhosis. When I had quit drinking, I just had a fatty liver. But apparently your liver an reach a tipping point, and even quitting was going to stop the cirrhosis. I've had over a dozen endoscopies since then (3 years ago) and had probably 2 dozen oversized varices banded. Totally painless. Except the one time someone other than my regular hepatologist performed it. He didn't give me enough midazolam, so I never really went under. He kept telling me to swallow, stop fighting it. I was drenched in sweat by the time it was over. I wanted to wrap the hose around his neck.

As far as sleep goes, I would at all costs avoid ambien. Ask your Dr. about trazedone maybe. It's a very mild antidepressant, that works great for sleep. Or if that doesn't work, maybe seroquel. It's an anti-psychotic, that in very small doses (like 10mg, a regular dose is at the lowest 600 mg) will have her sleeping like a baby. The first week or so takes a week to get used to (you're just very sleepy all the time until your body gets used to it), but boy you sleep well, wake up rested, and have great dreams.

Best of luck.

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I forgot I also take spironolactone and furosemide. Those help manage fluid in your body. I also take pretty much all the vitamins Lisa lists. But none of the antibiotics. You can see she has trazedone and seroquel(quetipane) on her list, taking both would knock me out. That seems like overkill. My docs discouraged taking both at the same time. I'm probably going to be put on lactylose pretty soon. That manages the ammonia in your body. I've only taken it as a liquid, while I was in treatment. It is the most vile tasting liquid in the world. I can't even liken it to anything. It has it's own special class of terrible. I also take a huge dose of B12 and B1, which I don't see on her list. And iron. The iron and B12 are for my blood, the B1 I forget why I take it. I know it helps with digestion. But I don't know if that's why I take it.

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Lisa, looked up Acyclovir 400 mg., but the site said it was for genital herpes, not liver disease?

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Straybullet, thank you very much for the informative post. Especially that the gv rarely bleed. Actually we are traveling to Mn., we live in a small town in northwest Ar.. We have to go to Springfield for any serious medical care and she has been misdiagnosed here and certain things went untreated for many years. She is on some of the medication you mentioned and some of the vitamins and I will check on the iron. We are thinking of the Med center in Little Rock as her primary care, we both are originally from there and it is only a little over 3 hrs. away. It is supposed to have a very good Dr. for care of the liver and we are checking it out after the 1st.
The fatigue and slight weight gain from insulin is kicking her butt and I am starting to walk with her in the afternoons for exercise after work. Can't work out in regular sense-botched back surgery, but water aerobics in the summer was good. She is watching her diet pretty well but could eat more vegetables.
Ambien has been prescribed, but she is only taking it when needed. I will watch that closely but not a problem yet, at least I don't think it is. The ammonia level worries me and I made sure it was included in her last blood test and the results should be in any day.
Thank you and Lisa for the great post and good luck to you both.
turfdoc.

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Hi Marshmellow,

lol, when I get wicked sick, I get cold sores INSIDE of my nose and they are wicked painful. The Acyclovir stops the blisters from spreading.

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I have really bad insomnia, hence the trazedone and Seroquel, none of these help me. I'm only taking taking the Zolpedin, but it gives such a hangover effect in the morning.

I have to agree with bullet, Lactulose is THE MOST VILE tasting liquid. It's like drinking Kayro Sludge. Oh and when you take this, do not leave your house, drive for long distances, shop, have family or friends over, even your pets will hate you.

I'll have to check out the B1 and B12. I thought the PreNatals had the iron, I could be wrong. I wonder how the Iron and Lactulose would effect each other?

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Lisa, I may have misunderstood. Is your list of meds just a general list which includes meds for other problems? I thought it was a list of meds pertaining specifically to liver disease? "Cold sores" are herpes virus. Also, prenatal vitamins are high in iron, which is very big no-no for people with liver disease.

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No, Marshmellow, my list is my list for my liver and all around good health meds list. I am anemic so I need the iron, when I get flu like symptoms, I run a high temp and when the fever goes away, a little cold sore, not all the time, starts. I know about the virus. Then I take one. You clearly STATED Genital Herpes, which I do not have, or want.

If YOU have genital herpes, I'm sure there is a website in which you can go to and read about this. I really have never researched it. Maybe you could contact your doctor, I can only assume it would be quite uncomfortable. Sorry I can't be of more help on this condition. :-)

Lisa

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For anyone taking Lactulose, the directions said you could mix it with coffee or milk or whatever. I've mixed it in with chocolate milk, low sugar of course, and now I put it in decaffeinated coffee with sugar free creamer. Can't even taste it.

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I was thinking of baking with it in brownies and leave it for my bf. ;-)

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Hi Turfdoc,
Mine were in my esophagus. Have you asked your Dr. about this? She's lucky to have such a concerned husband. The one thing that gave me the most relief is sticking to the diet. No red meats, lots of fruit and vegetables. I hope the best for you and your wife.

sincerely,
Darlene

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Thank you dg for the kind words of support. We have talked to the doctors but really did not get too much out of them except that if they start bleeding get to the hospital asap.. She is doing pretty good on her diet and eating a lot of fruit and watching the carbs.. I am going to start her on some more vitamins and make sure she continues with the B1. I am not really doing anything special as anyone with a sick spouse or partner would be doing what I am. I really can't say how much this site has helped me with every one of you there on the ready to answer a question or offer your stories or support and kind words. I just hope that I can do the same for some of you and my wife will be on here more often as she gets used to it. She really is the most innocent person I have ever met and she is afraid she will read something that will start to worry her. I have told her that if that happens we will discuss it and reply back and get some more information and go from there.
I hope you are doing OK and I am praying for everyone here.
turfdoc.

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