Varices

[Treble2023]

I have just joined this group and hope my story helps. I had an internal bleed Sept 2019 and was extremely lucky to survive.

2 weeks before i'd had a dizzy spell and collapsed in a faint in Aldi. My GP wouldnt allow me to return to work while investigating my BP etc.

I felt mildly nauseous for 2 weeks until one morning I vomited blood. Nothing but blood. It didnt hurt, it just confused me.

This happened again another 20 mins later, I showed my partner that time as he is a nurse, He said we need to go to hospital, We were calm but got their quickly. I just made it to the hospital when my legs went. Needed a wheelchair to reach A and E. I vomited blood in A&E and began to fade out, knowing I was dying. My BP was 65/30 when they connected me up.

At the time I didn't know I had cirrhosis and was frightened.

I had varices banded and it worked for me in September 2019. It was horrendous and needed a blood transfusion.

This year the varices have been banded again and I'm not sure if I should fly or avoid it??

[AyrshireK]

Have you only had the one follow up endoscopy after your initial bleed? My hubbies varices history is similar to yours - massive bleed out of the blue (in 2012) which led to his cirrhosis diagnosis - he then had regular endoscopies and banding (every 8-12 weeks) for the next 2 years. He had 42 bandings in total and only then did they say his varices were eradicated and moved him to annual endoscopy.

You need to check with your consultant re. safety to fly and make sure you have sufficient insurance.

We had a chap on here who suffered a mid-flight bleed resulting in an emergency plane landing and hospitalisation in France. Without insurance he ended up being liable for the landing costs and fellow passengers delays, missed connections etc.

Katie

[Treble2023 in reply to AyrshireK]

Thanks Katie, that's really helpful. A mid flight bleed is my worst nightmare, I hope the poor guy managed somehow to get through all that. I am pretty certain my blood loss was so severe and quick I would never make the landing. The blood vomit was projectile like the exorcist movie. I couldn't do that to my other half and for the horror it would cause others. I am considering travel by train.

[Livmar in reply to Treble2023]

Just curious, what grade varices do you have?

[Treble2023 in reply to Livmar]

they check for them with an endoscopy. They were unable to band them as too small for over 3 years. This year they banded some grade 2's and Ive had a follow up appointment to check if theyve worked put back 4 times because of NHS strikes etc. I am due one 9th August now.

[Treble2023 in reply to AyrshireK]

This chap. He's haunting my thoughts, Is he a survivor? I suspect using the past tense as you have speaks for itself. I'm worried about how I die and also want to live a life and prolong it. Sometimes i get down because there's nothing i can do to repair the damage done. Sometimes a managed death seems like the best option. Other times i think fck that lets party. It's all fckd up and i guess we deal with it the best we can

[Feras in reply to Treble2023]

Party on man...

[Livmar]

Best of luck. I have grade 4 varices still and hopefully will always stay compensated. It’s putting a big question mark on flying by plane even domestic here in the US. I take beta blocker carvedilol 9.50 mg to keep the pressure low. Wish you good health 🙏.

[Treble2023 in reply to Livmar]

I wish you well Livmar. I guess banding in USA is very expensive. This whole inforation gathering is valuable to some and others are better off not knowing. Sometimes I would prefer the not knowing option.

[Livmar]

It’s not actually the expense. My gastro thinks it might make things worse. My platelets are in the high 40’s so do not want to take a chance with bleeding. Im hoping they can come down in size because my wife and I love to travel 😄.

[Treble2023 in reply to Livmar]

I have a low white cell count all my life but it doesn't adversely affect my immune system at all. it has a name... blaaaa.

It's been a short 56 years but a fun ride, I want to prolong life but cirrhosis is such a bore

[Treble2023 in reply to Livmar]

Why does he think it might make it worse?

[Livmar]

Risk of bleeding.

[Treble2023 in reply to Livmar]

I just noted you said you are compensated. My varices might have been smaller but my live is uncompensated

[Livmar in reply to Treble2023]

Very observant . Yes, have never had issues with huge varices. I’m trying to figure that out now with another hepatologist. Something is not adding up. I’m just bridging fibrosis/cirrhosis. This is a weird one.

[Ewife]

My husband also had a bleed out of the blue. He had 13 varices banded in total over a few months. He is now checked every 6 months-year. He still has grade 1s left, but has been cleared to fly small european flights on a couple of occasions. We always check with the consultant first though. A bleed mid flight is unthinkable, but a bleed in a foreign country is also a daunting thought......Best run it past a secretary or Liver nurse first.

[Benwillfred]

I have had an almost exactly the same experience as you....one major bleed out where if I hadn't been in A and E when it happened I would have died. One minor bleed since which I recognised immediately and took myself to hospital in hospital a couple of days. I have asked my consultant regarding flying and he says OK....I won't fly against medical advice...however I also think life is for living...I can't sit around waiting for another incident....I do fly ..as my doctor said if I was in the UK unless I was on the doorstep of a major hospital then I maybe wouldn't survive !! So do exactly what the hospital advise but enjoy life !!!

[Yellowsydney]

Hi, I had a massive variceal bleed completely out of the blue, no symptoms at all, had taken my children swimming, got out of the pool and vomited up a sinful of bright red blood, up the walls, looked like a murder scene. When I got to hospital I was left overnight and told they thought I had a burst ulcer but they would put a camera down to look but probably not till next day, luckily they did it same day. I was also passing masses of melina, thick tarry black poo which nobody seemed concerned about. During the endoscopy I again vomited up masses of blood, so much that it caused a bleed in my brain and I ended up having a stroke. Was in a coma for 3 days and when I woke up doctor said I was lucky to be alive. It happened again 2 years later even though I was banded regularly.After this it took 6 years before I was actually diagnosed with cirrhosis as every blood test, ct scan, ultrasound was normal even 2 biopsy were inconclusive.

I've now had a transplant.

Good luck and hope your varicies stay away.

Hilary x

[Dogbot]

Wow that’s a lot to deal with I had my varices banded , it was a long slow job lots of hospital trips but no more and I’ve gone on to get a new liver 23th March ,just had a stent fitted in Billery. Ducked so they are sorting out a little hitch and living a good lifestyle again. So all good news look forward, and please contact your doctor for advice about flying. Good luck I hope you and your partner have a good time away 💕💕.

Stay safe All

Dogbot 🐶🌈Dave

[tracyliz]

Just to add to the conversation Treble, I had the same back in 2013,nearly died,huge bleed, 19 blood transfusions, ascites drained and I remember asking the consultant, "can I still go on holiday?" he said Yes but don't go to India....he was an Indian himself😀 You have to still keep on living. I did a parachute jump the year after from 17,000 feet in New Zealand and have flown every year since my knock on death's door. I really want to go the the Indian ocean, Maldives but maybe that is a step too far. I'm not being flippant, I'm 10 and a half years on now, live a normal life but with one rule NO ALCOHOL. I have managed to get travel insurane but it ranges in price hugely and it is cheaper to book for just a single trip than an annual policy. All the best to you .

[redpoint72]

Hello fella.Ive not so long had more varices banded,and still some left....another endoscopy in November, to have another look.

I was told its to risky to fly long haul, especially with my recent banding....can only do short haul...to my brother in the orkney Islands.

I just go by what my hep consultant says to me there the professionals.

I'm currently compensated, but varices keep on coming unfortunately.....so always a risk,as I found out seriously 4 years ago!!!!.

My best.

Chris

[GarySudzy6767]

Same thing happened to me. Started with vomiting blood, then it was in my bowel movement. This went on for some time time and I lost half of my blood. It was a good thing that my son found me passed out on the floor, he rushed to get my wife who called an ambulance right away. I went into cardiac arrest almost died. They zapped me back and it was at this point I found out I had cirrhosis I'm a non-drinker, and it's lead to various health problems since. Quadruple bypass surgery, a stroke and weekly visits to the hospital to have upto 20 liters of liquid removed from my abdominal area. Life has changed big time for me.

[An1063]

hi there and sorry to hear but hopefully you are stable. Nothing to add to others other than don’t risk your health. I’d say take the train ( depending where you are going)

We do every year and it is fantastic so much less stressful than flying!

Best of luck

[Treble2023]

Thanks to you all who replied. Every story makes me feel less alone with this condition. I was dry throughout lockdown and beyond. I ran into stesses at work etc and decided an occasional drink wouldn't be so bad. My condtion has worsened but it might have done anyway. Your support and stories give me some hope that if I don't drink and eat healthily, move more with exercise then it might be worth a try. Thanks. and all the best to you. Paul