Varices Grades and Treatment in Hepatitis and Cirrhosis

 

 

varices stage grade cirrhosis hepatitis
Higher number means more severe or widespread.

 Varices Grades and Treatment in Hepatitis and Cirrhosis – A guide for the newly diagnosed. I’m a teacher. I like good grades. How do I prevent and treat esophageal varices?  I am having another banding today. It is one method of treating varices for those with cirrhosis. I have not slept so well the last few days. I AM brave and strong. I fought Hepatitis C and won. I still feel afraid when it comes right down to it. I got good news at my last endoscopy with beta blockers that helped prevent and shrink my varices. I started walking and running more and can’t wait to hear how they look now.

The truth is:  I dread them. But the alternative is worse.  A bleed out is terrifying to say the least. Esophageal varices were the main reason that I was taken off of Hepatitis C treatment. I began vomiting blood and had several pints transfusion at week 43 out of 48. My ammonia went high and my platelets bottomed out and went way low. Still here and smiling.

This blog will focus on the varices treatments. If you have read my blogs about the liver and varices banding along with vomiting blood, you already have a good idea what the cause, effects and treatment are.  Today, to reassure myself and hopefully my best friends who have portal hypertension, I am recapping. Hey, it beats worrying and crying. I’m reminding ME and YOU of how varices can be treated and we can live a long life.

The cause: Your liver can develop scars from the damage of Hepatitis C or cirrhosis. Nash, fatty liver, autoimmune Hepatitis and other liver diseases can cause liver damage too. The fibrous bands choke off the portal vein. So the blood is not able to flow through your liver to get filtered as it leaves your intestines. It is forced to pump back up and out, creating a traffic jam in the blood vessel.

Effects: Varices are basically a blood vessel that bulges or expands out. Remember blowing up one of those long skinny balloons when you were a kid? If you held it a certain way, it would bulge up at the end and make a poodle tail? That is how I picture mine anyway. I do not like the pictures of my real varices. They give me a new set of images every time. What am I going to do with them? Make a scrapbook?

I prefer the poodle balloon image. Leave me in LaLa Land. I can cope better. But in reality, varices can actually form anywhere in your gastrointestinal tract. So varices can be found in the esophagus, stomach, colon, and intestines and anywhere the blood backs up.

varices grade endoscopy cirrhosis
I think the cluster in my stomach looks like the poodle’s body. Egad!

During my first endoscopy, they discovered level or grade 2 varices in my stomach. They were described as having wale markings, which means there had been some recent bleeding. I thought it was a stomach bug and red popsicles. They were clustered in the fundus area, which means right at the edge of my stomach where the esophagus ends. Because they are in a cluster, the doctor is unable to band them. It is a constant threat and would drive me mentally insane if I were not active in getting them treated. And thinking about purple ballon poodles. The ones in the esophagus can be banded. Just so you know: I hate talking about this right now. So don’t feel bad if you hate reading about it.

Treatment for varices

Diagnosis – You are at risk if you show signs of liver disease. You may have Hepatitis, high liver enzymes, jaundice, Cirrhosis, Nash, or fatty liver disease. Your doctor may order an upper endoscopy. If you have not had one, and are at any stage of cirrhosis, ask your doctor about it. It is not that much fun. But it is over quickly and you will know the truth about what you are facing. Wanna know what to expect? Read this one.

Appearance is everything: That is how varices are graded. I was Grade 2 when I was diagnosed. I went to 3 with the whole bleed out incident. Read about it here.

Grade 1 are small and straight.  – Like the very end of the balloon while you are blowing it up.

Grade 2 are enlarged and swollen.They use the word tortuous. What a word  Picture the bulb at the end of the poodle tail.

Grade 3 are large and can be coiled and long.  – Ok. I will put a pic in here.  At the very bottom. That way you don’t have to look if you don’t want to.

Grade 4 are Grande? I saw some references to it. Ask your doctor about that one til I can study it some more, KK?

Important facts about varices that are Good News and Encouraging to hear:

They can remain stable if the right treatment plan is followed.  Yes. Yes. Yes.

They can actually shrink if liver disease improves. More Yes! Yes! Yes!

They can expand if liver disease worsens and restrictions are not followed. No. No. No.

I mean followed as if your life depended on it. I HATE restrictions. We have enough of them with cirrhosis, like no salt, high fat foods or sugar. But restrictions can become part of your lifestyle with Hepatitis C and Cirrhosis. You CAN adapt. It may not be easy, but it beats the alternative, right?


Grade stages varices ebook liver loving diet menu ihelpc.comI can help you avoid bleeding varices with a low sodium diet and healthy protein.
Learn more in this ebook. 

Treatment The first line of treatment are medications like Nadolol or propanolol, which are the beta blockers. They reduce your blood pressure and keep blood flowing slower. Lower velocity, lower pressure. Remember the Dopplar Radar post.

I like that. By taking the beta blocker at night, most of the grogginess is worn off by morning. They may prevent varices from forming, and can also keep them from expanding. Keeping the blood pressure and pulse rate low can also prevent them from bursting and bleeding.

Ascites – If you have a build up of fluid, your doctor may not allow you to take a beta blocker.

Another course of treatment is to have an endoscopy and get them banded. If they are in the esophagus, it is a pretty simple procedure. When I first read about them it, fear shot through me like a rocket. Now that I have adjusted to the idea, I can see that it is a preventative procedure for those of us with portal hypertension. So I am fasting since midnight and getting a banding today.

I feel better now. I have reminded us of the diagnosis, level or grades. I have shared the good news that they can be stabilized or perhaps even shrunk. If you are out there anywhere in cyber space and facing the same thing…. It’s not such a big planet. We’re connected. You’re not alone.

Read about Dopplar Sonogram Ultrasound click here

Your mostly brave, but sometimes worried Best Friend in the battle against Hepatitis C, Cirrhosis, and liver disease – xoxo Karen:) If this is messy and needs editing… sorry. 😛

Pics via Magic.about.com, radiology,rsna.org,

Varices Grades and Treatment in Hepatitis and Cirrhosis

varices grade endoscopy cirrhosis pictures
I told you they looked gross. That’s why I put them at the bottom

About Karen Hoyt

Karen Hoyt offers a no nonsense approach to living with Cirrhosis. A Hepatitis C treatment survivor, she created a liver loving diet and lifestyle that allows her to create awareness and advocate for her Best Friends at http://www.ihelpc.com

43 thoughts on “Varices Grades and Treatment in Hepatitis and Cirrhosis

  1. Karen – this is the best written article I’ve seen on this subject. Thank you for writing it and giving a healthy dose of hope to those with varices.

    1. You know that your words are everything to me. Your website lucindaporterrn.com is bookmarked on my favorites. xoxo
      ps. What about that NO bands needed?

  2. HI Karen,
    Just wanted to tell you how amazing I think you are & how much your blog is appreciated. I don’t have Hep C, but I like to keep up on things for my sister. Your blog is so informative. Thank you for sharing your experiences with us.

    1. Cindy,
      I think we’ve talked before. I applaud you (standing ovation) for helping with your sister.

      Guess who took me to the hospital yesterday AND insisted that I sleep at her house last night? My sis.

      There are times in life when we are helpless. Thank God for sisters who hang in there with us. Some sisters are best friends who stick by us during hard times.
      Your sis is lucky. I love you right now. Thank you for reading and helping your sister. xoxoxo Karen:)

  3. Thanks for your posts, I finished treatment 9 months ago and I’m still svr . The downside is cirrhosis with grade 2 and 3 varices and your info is very helpful in understanding the treatment , etc. Thanks again!

    1. Dennis – Just logging off and saw your comment. What a great end to the day hearing your good news! Congratulations!! Varices is the pits for sure. We can do our best to live out our lives to the fullest in spite of it. I’m glad you found some useful information.
      Cirrhosis stage 2. Just think Dennis, your liver is no longer fighting inflammation. The chances of getting any more damage just went down. Wow. I’m glad you were a responder… and that you stopped by. I love new friends.
      Keep in touch, xoxoxo Karen:)

  4. I was told a few years ago.post transplant that my varices were stage 4..and I was put on carvidol…i haven’t been taking it lately…but I am thinking I should for this reason?

    1. Emma,

      Thank you for your comment and it’s great to see you on BFF site and fb. I looked up Carvedilol and think it may be the drug you were on. It is a non-selective beta blocker. Mine is called Nadolol. It’s an important drug if you have varices. Do you have an endoscopy every 6 months or have you been banded? I think that a good first step is to ask your doctor. I took my dosage back and had a bleedout.

      One thing to watch for is the low pulse rate. If the varices is actively bulging, then the lowered pulse can prevent it from bursting and bleeding. My pulse stays around 60-65. I did not realize how important this was until my bleed. I hope we stay in contact. It can be frightening for sure. It helps if we discuss it with our doc and each other. I tend to roll along and think everything is fine. Not too smart on my part.

      Let me know what your doc says, ok?

      Much love to you at the holiday!!
      xoxo Karen:)

      1. Thanks Karen. I do have a low pulse…60-65 and wondered why since I stopped that med that my pulse is like 70, but it is hard to get my weight off and to get my fat burning going so I can loose weight. I weighed 170 after my transplant, and they put me on steroids at rejection at 6 months and I gained a bunch of weight (up to 250) I am now down to 225, but have a ways to go. I am trying to exercise, but on the Carvidildol (sp), I can’t get my heart rate up. But no one has explained the bleeds to me and I have not known anyone who had them, nor have I had them. I understand the danger. I am scheduled for another endoscopy on Jan 9th so I will ask him then..but I am thinking I better go back on it…

        1. Emma,

          There is so much to learn. At first I was alarmed, but now with frequent bandings and medication, I am doing just fine. The exercise is something that is always going to be a challenge for us. Have you looked at my blog with exercise? I have a couple of them. One is for when you really can’t get much strength and have to sit a lot. It work!

          For me, with my diet, it is hard to put on weight. The constant juggling act… The steroids are necessary for you, I know. That puts you at a disadvantage for weight dear friend.

          The great news is that you are alive. What a wonderful story you have to tell. I hope you have a lovely holiday and that your bandings go smooth.
          It’s great to meet another friend in the struggle. We’ll have a bright new year!
          xoxo Karen:)

  5. Hi Karen. I wanted to follow up with some answers I rec’d after going back to the Dr. Apparantly in 2013 the one year I did not have an EGD the grading system changed, not unlike they did years ago with the RNA/PCR tests. I also learned why I have not been put on beta blockers. They are contra-indicated with asthma/copd/bronchitis drugs that I use. I also was told the keeping the salt low was a good idea, but not to worry about it in conjunction with what I thought was higher blood pressure during the banding prep. I do not have ascites and I never was a salt user per se. I also learned that having the Colonoscopy isn’t necessary, so I opted to have another EGD in about 10 days to see where the 4 large varicies were banded, and if they have returned. I also have good portal flow in the right direction and no varicies in the stomach. So yay and here I go again. The doctor has submitted a request on my behalf to a Specialty Pharmacy in CA to work as the go-between with my retirement insurance and the choice of drugs. The caviat being that the preferred trmt for me is without INF (contra-indicated), using Sovaldi by Gilead and another not as expensive pill from another drug company. Don’t know what that one is called. Too much to take in at one sitting. I keep checking my RX online account hoping to see an authorization soon. As, I live in the mtns in a log cabin, nearly off the grid. So he will withdraw the option to treat if I can’t do it before snow flies again this winter. I will be having my EGD with one of the surgeons who has been with the hepatology clinic since I started with them in 2006. Perhaps having been thru this once, I’ll be better able to handle the outcome, banding or not. At least I am not going to be dehydrated from colo prep 🙂

    1. You are really on top of things. I hate it that you can’t use the beta blockers. But with other dietary measures, maybe the varices won’t pop up. I am curious to see how your last banding went. The blood flow is great news! I’m so jealous that you have none in your stomach. What a blessing for you to be able to prevent new ones from forming.

      Have you heard anything about treatment yet? It can sure get confusing with all the new ones being approved and the options getting better all the time. Getting rid of the virus is such a huge step and will add many years to your life. Once the damage is done, we can hope for fibrosis reversal and keep the varices at bay by continued EGDs. I’m going every 12 months now and am hoping that no new ones have popped up.

      All my best to you as you beat the virus ad move toward a long life. Off the grid. I love the sound of it. I’m on a little farm, but sure love the mountains. I lived in Idaho for a few years and have spent a lot of time in neighboring states. Sounds perfectly wonderful.
      Much love to you,
      Karen:)

  6. Hello
    I have had Hep C for many years, I tried the treatment but it only drastically increased my viral load so they took me off, so for almost 10 years I have been just waiting for something new to come out, well ast night was my 1 st episode with throwing up blood, it scared me to death and off course it was 3:30am, thans so much for your information, I had no idea of anything like could happen, had never heard off it, I just have been in denial and trying to live my life. So I will call Dr in am go see him. You are so brave to share your experence Thank you

    1. It truly is scary business. I’m glad you hooked up with a best friend who has been there. Denial sometimes protects us or we would walk around in a constant state of shock! I hope your doctor is compassionate and will help you get on some Nadolol. Maybe a banding or at least an EGD. I’ve learned that none of these things is necessarily a death sentence when we get good medical care.
      With all of the new drugs, this may just be your time to get rid of the virus! You sound like you’re a strong person. I have to smile at your gumption – having a varices bleed and then reading on the internet. Smart girl. xoxox
      Karen:)

  7. Hi everyone .. What if u can’t take the beta blockers is there anything that u can do natural to help this problem .. I an at 1 for the varies an its been two month since my last test .. U said diet an walking helps ..?? That’s true ??

    1. Hi! I know of very few who cannot take the beta blockers and hope they will jump in and comment. What I do know is that they are using diet alone to manage their portal hypertension. If you have advanced liver disease, this may not be enough to prevent varices from forming.

      If I were you, I would stick with a low sodium diet because it always helps liver disease. I would also continue to walk and just keep my heart rate at a lower rate. My hepatologist told me that it was not so much the walking and heart rate that would cause varices to form – or to bleed. It was a sudden movement of lifting or jerking. For example, I just had a few banded and I have to wonder if weed pulling didn’t help create them. It seems such a mild exercise, and my husband got mad at me for doing it. Now I feel he was right.

      Does your doctor offer you any other options? Let me know. I will post it in my Q&A forum too, so check back.

      Thanks for stopping by,
      xoxoxo Karen:)

  8. In 2010 and 11 I had so many trips to ER everyone knew me. I would bleed and cough up blood, but by the time the hospital got to exploring “everything” all they found was ol d blood and could not find where it was coming from. On the first day of school 2010-11 session I bleed so much that I painted the bathroom red. (Sorry for the gross picture, but it is true.) I was rushed to the hospital ( a nurse friend came and got a hasmat suite and the cleanup materials and cleaned the bathroom before my husband had to see it), hooked up to everything, and thankfully my GI doctor was on call. I was in surgery within the hour. He did banding and then sent me up to a hospital ward for a week, where I received blood and was watched. I had banding every four weeks for a year and then it eased up so it was just every two months and then six, and finally once a year. Today I received a call from the staff regarding my weekend lab work and I will be having and EGD on Friday and what ever repair and banding is necessary. All my iron markers dropped significantly. Really significantly. My whole body is changing. Gained 40 lbs in one month, taking lasix and spiralactone, memory loss and foggy brain, sleep problems, skin iritations…etc. Contracted Hep C in the 80’s before they could test for it in blood for transfusions. I am fortunate I had a good 30+ years before it decided to take it’s toll. Still glad I am here. I am going to ask what grade my varices are, as I have not know. I have type 1 hepC and in third stage cirrohis.
    Thanks for listening dear friends. Sheila

    1. Sheila,
      I hear you on the bleeding. It’s amazing how much can come out so fast! The scariest part is making sure that you are not in a position to aspirate (breath in) or choke on your own blood. By kneeling in the yoga child’s pose, it all went out in front of me. Sounds like you were kneeling at the stool. I’ve done that one too and it can be a mess.

      That is a lot of bandings! Been there, but only needed 6. One every month. They tapered me off the exact same way. Have you noticed that sometimes it is harder to swallow after a banding? Like 3 weeks out and still not swallowing well. They want another one in a couple of weeks. I’m putting it off.

      I hope this one goes smooth for you. Keep me posted. The weight is ascites, do you think? You may have to stay on high does of spironolactone and lasix for a while. It took me about a year to get mine under control with a strict diet.

      Your report from the doctor should tell you what stage or grade your varices are. It sounds like you have a good doc who is on top of things. You’re in my heart today dear Sheila.
      Love you,
      xo Karen:)

      1. The EGD went well. The doctor found the polyp and it was bleeding. They put in a clamp, cut out the polyp, and then banded the bleeding. The biopsy of the polyp came back negative. (Yeah, at least something is negative.) I will have another EGD on Nov. 12th. I am so tired of this, but it is keeping me from other surgery. Now, my blood counts and ferritin count have to come up. All the iron infusions were just wasted. Do you notice that it is hard for the people around you to understand that severity of your exhaustion and fatigue? I rarely tell my husband of the nights I am awake or the pain I am in. He always seems to make it about him. I had said I could not help in his classroom, when I was having so much trouble with anemia, but that did not work. He stressed out on me and I ended up going in. He is a loving man, just cannot get it into his head when I say “no, I cannot do that”, that I really have a reason. Just sounding off. Hope you are doing better. Sheila

        1. Sheila,

          There you are! What a relief that the polyp was negative. We’re just twinkies right now. I had one the last week of September and have another one the first week of November. I had to be on a really soft, like almost liquid diet for almost 3 weeks this time. I guess it was a bigger varices.

          I’m with you on not talking about the pain and all that we deal with. I think people can tell. I get quiet. My husband says I have a pinched up look on my face. Like I need more wrinkles! But he worries. Then I feel weird. Ok.

          I’m gonna be real with you. Set a limit and just say no. We have to unplug from other’s stress. There will always be flack when setting a boundary, but it’s got to be done. I actually have a blog somewhere on this that I need to polish up and post. People are well meaning, they just don’t get it. And you’re right, it’s easy for them to see things from their own perspective. NOBODY really gets what we’re going throug except our besties who’ve been there. If you don’t take care of you.. nothing matters anyway. I needed to say this today. I lost your comment in a bunch of spammy ones. This was the perfect day to respond. See, I’ve been sleeping off and on all day again. Just tired. My dh is out of town for a couple of days so I can just pile up in the bed and zone. We totally need a retreat house where we can get the rest we need with no guilt.
          You know I’m pulling for you. We can do this.. xo Karen:)

          1. Since the last EGD in early October, I do not notice any difference in the fatigue or exhaustion. I am not allowed to take iron right now. I am thinking they want to know if all this banding is working and helping or if there is more bleeding somewhere. I will keep you posted after the Nov. 12 EGD.
            It is so hard to take care of things like bills, house, etc when you feel so lousy. Sometimes I pay things twice, so I made a sheet that I use to click them off. I have groceries delivered, someone do the ironing, and the remainder is my responsible. Since we had my father die in March and our oldest son in April, we have one room just full of boxes that I cannot face. My husband said he will help me with them in December. We shall see.
            You would be proud of me. I helped my one day in the classroom on Monday. Then Tuesday night Ed asked if I could come in on Thursday and help with the Crome Book computers and the kids with testing on them. I did not feel well at all and said, “No”. He kept trying and I reminded him that one day a week is all he gets. A bit later I told him saying NO to him was the hardest thing I had ever done. It was. He survived today and I have come done with a fever, cough, sore throat, …I just look at someone who is sick and I catch it. Thanks for the encouragement. I think of you daily and hope that you are surviving happily. It is hard to be happy all the time, but it does not hurt to try some of the time. I am going to look up what causes polyps in the esophagus. Let me know if there is anything I can do. (Sorry, this is so poorly written, but I am on cough meds so I do not damage anything and I am really tired.) Sincerely, Sheila

  9. Thank you for this post!
    I went and had my third upper endo yesterday and had 2 grate 2’s banded. They were noticed in 2011 so it was about time!
    My first banding was four tied off but I don’t remember having the pain that I have this time! it was ruff to even swallow! I am thank ful for all the great info out there that helps us deal with our issues and people like you who share with us all!

    1. Hello there! Great news that you only had to have two banded. I am glad you did well during your banding, so sorry you had pain. I really appreciate you sharing your experience. I think many people are worried or nervous and will appreciate hearing how you did.
      I am Dee, a friend of Karen’s helping out while she recovers from a procedure. She is doing well.
      I know that she appreciates hearing from everyone, take care, Dee

  10. Karen I just got my varicies banded they did three of them two small one and a large one.To date I have had 27 banded procedures and for the first time after a week I feel pain when I swallow and hard to burp .It is a symptom as if it was an obstruction in the Esophagus…Do you have an explanation of this to give me. Will it go away with time ??It also feels like an accumulation of gas and food has a hard time to pass through…..

    1. Wow! You must hold the record for the amount of bandings done! Yes there can be scar tissue caused from repeated bandings.

      I still have problems swallowing. It can be painful and can even result in a vomiting-like episode. No fun.

      Here are some tips for you:
      Be sure to chew your feed really good.
      Take your time and don’t rush through a meal.
      Drink water and slow down mealtime.
      If you accidentally swallow a big bite of something, stop and breath.
      Do the burp thing to get it moving.

      I really feel for you. You’re taking good care of your body by getting banded. It takes a lot of water to take all of my pills since the transplant. lol.
      Take care dear one.
      xoxo Karen:)

      1. Thanks Karen for your advice, That is exactly what I am doing at this point !! I want also to let you know that I have had 6 different surgery years ago for Chron’s desease in which Hep C was the result of a bad Blood transfusion during one of my surgery…Ended up then with a ilieostomy, And now with Liver Cirrohsis !!!!, …Hopefully now with the cure of Hep C , my liver will regenerate a bit. Thanks again !!!

        1. Great to hear from you! Wow 6 surgeries, that is quite a bit! While I am not positive how I got it, we think I got is from a gama globulin shot. They used to use it to help your immune system to help when you were exposed to various things. like measles as a child or Heptatis A or B, can’t remember which as it was the 70’s and I just did what the doctor told me to do. They gave it to a all Vietman Vets before deploying. It was a combination of different people blood products. I never knew that until I was diagnosed back in 2008.
          There are many ways people got it. The main thing is to treat it before it causes other problems. Since I have been cured my liver has improved. I also changed my diet quite a bit which I believe helped. I do everything I can to help my liver work better. I mainly drink water. Take care of yourself, Dee

  11. I forgot to mention that following a treatment of Solvadi & Simprevir last fall that it was a success and now am cured of HepC .All I have to do now is try to get my Liver in good working order and manage the Varicies !!!!

    1. I’m so proud of you for being able to finish treatment. You’re a tough one! haha. Me too. Now you can do this. I was managing really well until the tumor came up. I had to take the beta blocker and keep my heart rate down. Also eating good food helped. But your liver can work for you for many years.
      Good hearing from you again!
      xo Karen:)

  12. Karen,

    I really appreciate your post because you come right out and tell it like it is. I have been going to Mayo and, even when I ask, don’t get the sort of answers I would like. I’ve had to figure everything out on my own, it seems.

    I just had an endoscopy after having to push one after 6 years since my diagnosis of PBC in 2010. I had med/large varices at that time and was put on Nadalol. Apparently it worked because, six years later, my varices are now large but not bulged out, so that’s good. I don’t believe I have any varices in my stomach.

    I am 68 years old, do 45 minutes of treadmill every day, eat healthily, just paid out of pocket for a vitamin/mineral test (Genova NutrEval) and a hormone test. I am very low on Alpha Lopeic Acid require B vitamins, etc, was recommended NAC, etc, etc. I purchased very high quality vitamins but I noticed after two days on the supplements, my stool turned lighter in color. I stopped the supplements and it took about a week or so for my stool to darken again. I’d say it’s 75 % back to normal color. So, I’m wondering if this was a fluke or if I should not be taking too many supplements, no matter how pure and high quality they are (Pure Encapsulations).

    Also, I thought my estrogen would be very low because I had a mastectomy in 1994 and was told my estrogen was “lower than low” at the time. Now, it is very high and my hormone/immunolgy specialist does not understand why. He wants to give me a low dose progesterone cream (25 mgs) and DHEA (25 mg). He is aware of the need for the cream to by-pass my liver, so that is good. I’m wondering if it is safe to take progesterone cream or DHEA or even Alpha Lopeic Acid because I took a very low dose vaginal estrogen cream (estriol) and after 12 days my stool turned light. I got off the cream and it took a month for it to return to normal color.

    MELD is 7, 122 lbs, 5’2″, splenamegaly, varices – large but not sticking out, low platelets (35,000). No itching. Liver enzymes returned to normal 6 years ago after beginning URSO. I am low salt, low fat (use medium chain coconut oil, instead) and low sugar. I take very good care of myself and am going to start juicing greens, thinking about opening the supplement capsules and dumping the powder in the green juice for better absorption/assimilation.

    It is so important to have someone who has “been there, done that”. Thank you for being there. I’ve been pretty much alone with this for too long. Mayo has adopted this new policy of “if it doesn’t affect the outcome, it’s not important”. So no one has bothered to replace my fat soluable vitamin deficiencies from the beginning. I had to bring it up or it would not have gotten done. I feel, because of my age, and the fact that I cannot get a transplant once I’m 70, they save the attention for younger patients who may be able to get a transplant, one day. I don’t have time to get sick enough, soon enough.

    I just asked my doctor for a Fibrosure test and she said it’s not necessary because they already know I have cirrhosis. (They are just waiting for the next shoe to drop, so to speak, before they will initiate any action- this has been my impression from the get-go) It is true, I do have cirrhosis, but I still want to know what percentage of my liver is functioning well. Just because my liver enzymes came down to within the normal range, does not mean they know how much damage had already occurred prior to taking URSO.

    I learned more from reading your blog than I have learned from my Mayo doctors in six years. I kid you not!!

    So, thank you for being there. I did ask my doctor the same questions I am asking you but I don’t know what she is going to say. She is a surgeon so I don’t know how much training she has had in these areas. She just doesn’t seem engaged. One doctor who specialized in PBC left Mayo and the other doctor no longer takes PBC patients.

    Thank you for listening!

    Saundra

    1. I wrote a well thought out reply and it didn’t go through. Darn it! I will summarize here with a congratulations on being at ESLD with no varices. That is a wonderful thing. I’m not surprised by the doctors response. I think we are the ones who nudge them into doing some additional research, don’t you? It sounds like you advocate for yourself very well. That is huge. You know your stuff, so I don’t think you are a patient who is easy to ignore.

      What I didn’t have an awareness of is the age 70 limit. Is that just in your state?Your body is strong. It’s “compensating” well in spite of a tired liver. You can be transplanted.. right?

      Again, short response, but I have a doctor looking into my hormone replacement therapy. I’m going to write about it as soon as I return from the Transplant Games.

      Thank you for you note, It always means a lot to read comments. xo Karen:)

      1. Hi Karen

        I’m from the UK and the cut off for a transplant is 70 too. I was so pleased to find your site….I have has PBC for 22 years and suddenly it has gone to cirrhosis and I have 4 stage 2 varices. I had the first banding after a bleed and I could just about eat OK but this second time, a month later, I cant swallow without this big lump in the gullet in the way! Five days and still only soup…tried rice..no. ..no….soft potatoe etc..still no no.I see this can happen on Your site but when I called the hospital they said they had never heard of it! I am not quite sure why I have to go back again in three weeks for banding but apparently that is what they do…I’ll have to put off for a week or two else I will be so thin and hungry.I have trouble putting in weight too.

        Good luck to you and any advice would be great.

        1. Oh, I am so sorry to hear. Karen ate a lot of soft food, I don’t remember how long. We are all different and all respond to surgery a different way. Keep eating the soft food. Can you get in to talk to your doctor?
          I hope KAREN will log in to answer your question, Good luck, take care of you!! HUGS Dee

        2. I’m so sorry for you! I can honestly feel your pain as you describe it.. Okay. This does sound like what happened to me. Did you read my post on banding? Where i got esophageal spasms? Go to the home page and click on the black checker flag. I have a post on banding. Maybe more than one.. xo
          The repeated bands are needed because they don’t get them all at once. I actually asked my doctor not to do more than 5 at a time because I always had more pain if he did.
          As for the lump in your throat, I still have it. We think it’s scar tissue from repeated bandings. I have to be sure and chew everything a long time. It should get better between bandings. I never had more than every 3-6 weeks. I hope that you will drink broth with masked potatoes. Just drink your food for a while. If you have a blender, use that too. I can honestly say that I spent weeks eating poorly, and there is just no good advice sometimes. Time. Time WILL make it better.
          Feel my love sweetie. I hope this pain is better soon.
          xo Karen

  13. I agree with Linda Porter – “this is the best-written article I’ve seen on this subject!” Thanks so much for explaining this! I am just out of the hospital after being tapped, have portal hypertension, esophageal varices, and was told I needed banding on my last endo about 6 months ago. I have so scared, but know I understand 🙂

    1. Hi John! I remember meeting you on here right after I treated for HCV. You’re really having a hard time of it with symptoms right now. I knew you had hepatic encephalopathy and hope that’s getting under control.

      The landings aren’t so much fun, but you can eat soft foods for a few days and it will all be over soon. Keep taking your beta blockers to keep the varices at bay!

      xo Karen

  14. Hi, I just came across your site tonight. My husband has Stage 4 for about 8 months. He has been referred out to UCSF but has to pass urine tests as well as other doctors to hopefully be put on liver transplant list. At this point his liver doctor doesn’t see him at all and refers him to his Family Doctor. We can’t believe it! The severe itching and all the other symptoms, it’s horrible and no relief or assistance from the doctors at all! What do we do to get some help! My poor husband is wasting away! I thank you for your advice.

    1. Welcome to the best friends site and I’m so sorry you’re joining us. That hospital has been a good one for other readers that have written to me. This is where a family member can be the advocate and speak up for your patients rights. He should be seeing a transplant doctor. Does he have any swelling or bleeding? Are they doing other tests to find out what stage? Keep me posted and keep calling. I was a HUGE PEST to my doctors. I also let them know that I was eating healthy and trying to help myself. That kind of keeps you on their radar.

      Really, let me know how it goes. I try to get on here as often as possible. xo Karen

  15. Well written, Karen .. I was dioganised cirrohsis in 2011 and it has progressed to stage 3 in 2016 because of my stupidity (social drinking)..I have had all symptoms of decompensated liver disease viz. Jaundice, ascites, esophageal varices (grade 3), edema etc. and listed for liver transplant. I am in perfect diet and doing meditation (simple yoga &breathing exercises ) for past one year. Doctor has done ligation / banding in 2 varices last year. Now my blood results are excellent meld score came down to 7 (earlier it was 35 !!). To the surprise of my hepatologist, varices shrinken to grade 1.
    I dont hesitate to tell all those who are suffering with liver desease with common complications like enlarged varices, ascites etc that it is NOT a death sentence. Absistence from alcohol , low sodium diet and light exercises can do miracles.

    Never seen such positivity in any other blog . Thanks a lot ..I sharing my experience for the first time. Excuse for my poor English.

    1. I’m so happy to see your story… but I’m sad that you have to write this out though. You are wise to be caring for your body with a good diet, yoga, and meditation.

      Our body knows how to heal and you can continue to see this! What good news that you are sharing this with others who can see the proof with your numbers.

      You are right and I hope everyone hears this: it is NOT a death sentence. Our body will heal with proper diet, rest, and exercise.

      All my best to you during this time of healing. I’m sending love and prayers.
      xo Karen

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