Varices

[julie-001]

Hi everybody,

I had my 2nd Endoscopy today and they have reported that the Varices found last year have now disappeared, Has this happened to anybody else and are they likely to come back?

[AyrshireK]

Have you been on beta blockers to treat your portal hypertension? If you have then they will have reduced your portal veinous flow resulting in less pressure in your thinner blood vessels and disappearance of the varices.

[julie-001 in reply to AyrshireK]

Hi Ayrshire.Thank you for your reply. I was on beta blockers initially but my consultant took me off of them. I am on a clinical trial but the tablets could be placebo. These tablets are to see if they are beneficial for helping with Varices. When I had the endoscopy today the report states no Varices seen. I wonder if it is that the tablets may not be placebo and have worked? If they are placebo, i wonder if i am still a candidate for the trial if i no longer have Varices. Can Varices return?

[AyrshireK in reply to julie-001]

Varices can return if you have portal hypertension - over the space of 2 years my hubby needed 42 varices banded - up to 6 at a time per endoscopy. He never got put on a beta blocker (except for about a fortnight by a locum but taken off them by liver specialist). His consultant went for the aggressive banding regime instead to eradicate varices.

Katie

[julie-001 in reply to AyrshireK]

Hi Katie. 42 banded, Your poor husband. How is he doing now? I have no idea of what is going on with me. I was diagnosed in january 2022. It started with Ascites and then went down hill. Now I feel better than ever. I have regular scans, appointments and blood tests. I still feel really sore internally but can live with that,To be fair the hospital have really looked after me but I have no idea of how I am doing. They have said that my spleen is of a normal size and thats about it.

[AyrshireK in reply to julie-001]

Hubby is 11 years on from his diagnosis which came out of the blue when he had a massive variceal bleed. His cirrhosis is due to auto immune liver disease.

Still ticking along, no way 100% well but not transplant needy anymore (was on t/p list for 10 months back in 2014-15). Just riding the roller coaster that is life with cirrhosis and trying to live his best life despite it.

[Violet74 in reply to AyrshireK]

Hi

I had a bleed a month ago they banded 3 varices. I wad left sitting in triage for 5 hours I think the bleeding stopped. I took a blood pressure tablet while I was waiting. It was an awful experience I did complain to the hospital. They just fobbed me off. I saw my consultant a coule of weeks later she was very offhand. To be honest I don't like her she has hardly seen me in 4 years when she does she asks am I still drinking. I tell her no not for 4 years. I am supposed to be getting a CT scan nothing as yet she has probably forgot. Also she said I will probably have another bleed since

I had this one. I constantly think about it every time I feel sick I am terrified.

I adked her about a possibility of a transplant I got a No. No explaination.

Liver is compensated for now I have spleen problems and my bloods are poor. Also have be portal hypertension feel really depressed. Its like living with an axe over my head. Needed an op on my foot but they said too risky. Sorry for moaning but I know how knowledgeable you are. Best x

[julie-001 in reply to Violet74]

Hi Violet.

Its lovely to hear from you. So sorry you are having such a tough time. I gave up alcohol when first diagnosed 19 months ago and it sure is tough isnt it? You should be so proud of your 4 years. Thats a massive achievement. Can you talk to your GP regarding your medical care?

Are they more understanding.

I am so lucky with my consultant. She gives me the latest appointment of the day, get the formalities out the way then chat about the things not so depressing, family, life in general etc.

The care i have received has been faultless.

Go to the parties and start living that different life, That is what it is now, different.

Maybe call the liver nurses helpline for support.Perhaps they can make some suggestions.

I really do hope things start turning around for you.

As regards to a transplant, that has to be good new as the Liver is compensated which means it has some function.

Take good care of yourself. xxx

[Ewife in reply to Violet74]

My husband celebrates 3 yrs since his bleed on 5th September. He had 13 bandings in the end over a period of few months. Even now, they haven't gone, they're are just lower grading, and Dr's are always surprised he's never had anymore. We all live in fear of another bleed, but as time goes by we start to see this date as some unusual kind of anniversary. As he says, what's the point in surviving if you don't get on and enjoy living now? Not sure if this helps you, don't want to hijack Julie's post, but want to reach out to you. I have to believe that 1 bleed doesn't mean another is guarrenteed - or life would be unbearable.Atb

Ewife

[Livmar]

Hi Julie-001, this is so interesting to me on so many levels. First of all congratulations on no more varices ! If I may ask:

When was your first EGD ?

When was discovered you had varices?

How many total varices did you have- esophagus and gastric?

What grade were they 1-4?

How much time past before your first EGD and your last?

I was not aware there was a clinical trial for varices. This is Fantastic!

When did your clinical trial start and how long have you been on them?

Do you know if this trial is also in the U.S. ?

This is so wonderful to hear as I have cirrhosis with grade 4 varices here in the U.S. I am compensated and really doing well other than the varices. I have done well everywhere else except this which physics seem to take control no matter what I do.

I truly appreciate your responses and thank you sincerely . Best of health 🙏.

[julie-001 in reply to Livmar]

Hi Livmar. Thank you for your response.

I was diagnosed with decompensated Cirrhosis on 17/01/2022.

Went to hospital with ascites which was drained and thankfully has not returned. Had all the usual tests US, CTC etc

The first Endoscopy was in the march. I was then told that I have grade 1 Varices and asked if I would take part in the clinical trial.

The trial is called a BOPPS trial for Kings College hospital and is for 3 years, so I have been taking them for 15 months and have never missed a single day.

The tablets may be Carlvedio or may be Placebo, I was told at this stage that I am compensated.

Yesterday I was told that the Varices have gone.

Could it be that I am lucky or could it be that they are live tablets and prove that they really can help with Varices.

Just thinking they may keep me on them to see if they stay gone?

Wishing you all the very best x

[Livmar in reply to julie-001]

Hi Julie, Thanks very much for the information. I looked up your trial and it is actually for a beta blocker(Carvedilol) 6.25 mg then increased to 12 or placebo.

"(Intervention: Placebo or carvedilol 6.25mg once daily dose adjusted to 12.5mg after a week if tolerated

or if HR <50-55 bpm is reached. 1:1 randomization ratio."

This is actually the beta blocker that I have been on for the last 15 months myself. In my case, my grade 3 varices increased to grade 4. I have done a lot of research and have not found anyone whose varices have disappeared either on their own or with medicine without the use of banding or sclerotherapy. When I saw your note, I was delighted.

My understanding is that Carvedilol is the most potent drug for varices preventing bleeding by up to 40-50 percent. I will just keep my fingers crossed and hope that at my next EGD next year my varices at least are still good or God willing they will have decreased.

Good for you on your progress! All the best :).

[Yellowsydney]

Hi, yes and yes, I had a massive variceal bleed, lost nearly all the blood in my body, varicies were banded often, I took beta blockers and after a while I was told I didn't they had gone, however I then had another massive bleed but after another intensive period of banding every month they again disappeared and I didn't have any. They continued to monitor them until I had my transplant but didn't have any for several years. I think it's a matter of control and if you can improve you liver condition, no alcohol, change of diet it lowers the risk of varicies.Good luck

Hilary ❤

[Bs1524]

That’s fantastic news. My husband was diagnosed in May 2019 decompensated two grade two varices but after the initial endoscopy he has never had another one. He was taken off most of his meds last year supposed to have beta blocker and low dose diuretics but he doesn’t take them snd to be honest if he hadn’t been diagnosed you would not know he had anything we ring with him. He is so well never had a bad day I am starting to wonder if they got it right.

[julie-001 in reply to Bs1524]

Hi there,

I am so pleased to hear he is doing well. I was told after about 2 months that I was compensated and feel really well apart from internal tenderness. Was also taken off any meds at the same time. Not bad after they gave me a year to live if I continued with my life choices. Yesterday they said that the Varices have gone. I dont think they have it wrong though sadly. I was really poorly in the beginning with a week in hospital. x

[AnxiousPete]

That is fantastic news

[TruthWillSetUFree]

That’s excellent news! Congratulations!!!

[ceward204]

This is a complicated reply. My wife in November of 2020 was diagnosed with Fatty liver. Then with Fibrosis grade 3.

She had caught Covid in Jan of 2020, when people still not know what it was. She dropped from 208 pounds down to 115 pounds between May and Nov of 2020. Prior she had no liver issues.

When she was admitted her liver was 32cm in size and severly fat infiltrated. She had pericellular fibrosis Grade 2/3. The reason she had bridging fibrosis, but the liver architeture was maintained.

She had 4 cysts. One had compressed and blocked the Portal Vein, another had the IVC compressed. It causes some small grade 1-2 varices in the eshaphgus.

While deciding how to return blood flow and remove the cysts they vanished and her Portal Pressure returned to normal.

A GI scope in June of 2021 showed small grade 1 varices that when blown on, would collapse.

By November of 2022 she showed no varices at all.

Although here in Canada after moving back from the US, the Doctors were confused as her LFT were all perfectly normal. Her GGT test was a point or two above normal.

But she had elevated Bilirubin, low Albumin, and low hemoglobin.

Her last Ultrasound in November of 2022 showed her liver had returned to near normal size and had a smooth echogenic surface, with mild surface irregularities. They argued was this due to underlying cirrhosis? or the fatty liver? Well smooth echogenic means your liver is pretty good.

What the doctors here had missed is she was hemolytic anemic which explained her bilirubin/hemoglobin/albumin level issues.

But one doctor was convinced she had decompensated cirrhosis.

Sadly she passed away on Jan 30th. While in hospital she caught ESBL, COVID again, RSV, Hospital Aquired Pneumonia. And although she beat all of that. She had been given Vancomycin and had hit Toxic trough levels 5 times, severely damaging her kidneys. And passed in her sleep from renal failure.

The night before she passed, the Doctor was convinced she was pulling through and would be home in a week or two. Walked in the next morning to a nightmare.

All I can recommend, if you can get an advocate, and stay on top of everything.

I have argued many times with the one doctor. Listen you don't go from no liver issues Jan 2020 to fatty liver November 2020 to cirrhosis in 2022 and dead. More so when your doing everything your suppose to do, when dealing with fatty liver (she stopped smoking, we never drank so that was a non issue, reduced Sodium intake...etc..etc)

Sometimes a doctor gets stuck on a diagnosis, and will misread results to fit that.

So stay on top of things. My wife was only 58, and prior super healthy. So assume nothing.

[julie-001 in reply to ceward204]

Hi Ceward. I am so saddened to hear of your wifes passing. She sounds like a very brave lady and was lucky to have you supporting her. I hope you are taking good care of yourself.

[Livmar in reply to ceward204]

Hi Ceward, my deepest sympathy ❤️ So sorry you and your wife had to go through all that. It’s hit or miss with doctors. Thanks for all your advise. Many blessings to you. Hope you are staying strong.

[Readlots in reply to ceward204]

I’m so sorry to hear about your wife. It must have been such an awful time for her to be in hospital. It must be very difficult to come to terms with a loss like yours and I’m sure others will relate to your grief.

[GarySudzy6767]

I had 10 and gradually they went away (healed) my last endoscopy that did not have to band any varices. So I would be on the side that says yes it is normal. I'm being considered for stents in my liver due to ascites building up and they are drawing 20 liters of liquid per visit every two weeks. Does anybody have these stents and do they help your body dispose of the liquid build-up?

[Readlots]

congratulations Julie! Well done for taking part in the research. It’s good to know there are treatments in the pipeline

[sophiaS1980]

I think anything can happen with liver disease and everyone is different. Speaking of varices, i know a guy that had bleeding varices and they stopped on their own and never returned until 5 yrs. later, doc's seem to all say this is impossible until he showed the sample/pic of his black tarry stool. They said it was blood but this is usual for it to stop on its own and not return until 5 yrs later, so, i always say anything is possible with liver disease.

[FASDmum1]

Did they actually say gone/disappeared? Or maybe you didn’t need any treatment? That’s not the same thing but I think you need to speak with someone to get a better understanding of what is happening.

In my case I’ve had stage 1 (tiny) varacies for about 5 years with monitoring but no treatment needed and only this year needed treatment as they have gone to stage 2.

[julie-001 in reply to FASDmum1]

hi there

Thank you for your response

It does say on the report that there are no varices detected