Hi I'm 45 year old female. I'm been diagnosed for 2 years with a rare blood disorder and jak2 positive which has lead to liver drainage problems. I've got 3 blood clots in my portal vein, which courses lack of blood flow to my liver.
Recently I've had osphagus varicies banding which is how I found myself on this site , looking for help because of the pain it has left me in.😓
Hey Joall,
I am pleased (not really) to inform you that I have MPN - PV Jak2+, portal vein thrombosis (blood clots) and Liver cirrhosis. You are far from being alone. I've so far had 30 varicies banded. I have some understanding of what your going through. Have you also found the MPNVoice site? There brilliant there too!
Chelle x
Hiya Chelle.
Thankyou for replying so quickly. It's amazing to find someone else with this condition. I have registered on MPVvoice also.
Did you have alot of pain with the varicies? I had my first session last week having 3 bands and the pain now is horrible, 7 days on I'm drinking ok but still struggling to eat?
Jo x
I always struggle with the banding, as you say for about a week. Always advisable to eat soft foods, soup, pasta, mash etc. because of the equipment they put down your throat it can make things quite swollen. They also blow a lot of air into your tummy to spot more bleeding so if your more 'windy' than normal that will be why.
I found ice lollies to be a godsend!
How did all your problems come about?
I started with bad stomach and liver pains, went into a&e in Wolverhampton and it took 3 weeks to diagnose me with, portal vein thrombosis, enlarged spleen and ET and jak2 positive. This has lead to the varicies and other liver problems. I'm still working full time and carrying on as normal as possible but some days are difficult.
What about You?
Crazy isn't it what makes us seek help! I was in the Royal Navy and running lots of races, October 2013 I was sick with some blood and had passed some too, didn't think anything of it, sent to work, felt poorly sent home to sleep for a few days, went back into work and was sent straight to the doctors because I was yellow. My GP sent me to the hospital for a US, they picked up Cirrhosis of the liver and the PVT admitted me to hospital there and then, stayed there for 3 weeks when they decided I had liver cancer. Eventually they said no to the cancer and that they were benign tumours on my liver. Took until Feb 14 for me to find out I had PV. Over all that time I have been in and out of hospital, scans (CT, MRI, US, BMB etc...) I am still working full time although I have been medically discharged from the Royal Navy.
Your right, some days are harder than others, I find it tough to get out of bed or focus on my day to day jobs. This site keeps me sane, you'll see you will have your regulars that will be brilliant with information and support. You'll also find that there will be support groups in your area that are not only good for you but family too.
I hope the weather isn't giving you too much trouble. What medications have you been put on?
I am on Hydroxy, warfarin, spiro, ferusomide, propranolol and omeprazole...
Your condition is more severe than mine. I haven't got any cirrhosis, just biliary drainage problems.
At the moment I'm taking, omeprozole, warfarin, carvedilol and sometimes iron tabs.
What part of the country are You?I'm in the staffordshire so weather isn't too bad atm. Luckily I'm off sick this week so can just watch from the window.
I will look around for support groups locally but I'm not one for taking time out for myself usually.
I think all conditions are relevant if there a pain in the butt then it doesn't matter whose is worse, I think it has a lot to do with how you manage it too. I eat as clean as possible and try to stay active although I'm not good at that anymore. I am down south (Portsmouth) and nothing but blue skies for us!
Try to look at the group as another medication to help you in moving forward or helping someone else deal with there medical condition.
I am on the transplant list now and have been waiting a little while. I hope things get easier for you soon! x
Hi there chelle I’m on my second bleed now with liver disease so off work at the minute,loved reading your story I’ve an appointment in October for possible liver transplant,also just been in hospital for a non acclusive pvt which my consultant thinks built up my hypertension to cause the second bleed because of low platelet count they haven’t given thinners for the blockage but the tight chest it causes seems to be getting better a little anyway,what caused me to text was that I saw your medication in particular the diuretics as I’ve just been subscribed them also the pvt is starting to give me asities it’s just that the diuretics are causing really bad nipple pain and was wondering if anyone has had the same ,it’s spiron that they have given me.thanks paul
Hi absolutely hate to tell you this Ushers but sadly Chelle is no longer with us - she recently passed away having had to have 2 liver transplants within 24 hours and a fortnight or more battle post transplant which she never recovered from.
She's a very sad loss to our community of liver warriors.
Hope you get some answers to your enquiry, it might be worth starting your own thread with your own particular questions as they'll probably get lost on this older thread.
All the best, Katie
Certainly brings it home the reality of the condition,thanks for telling me
Welcome to the forum Joall,
We hope you will find it a supportive place to visit, its great to see Chelle has made contact with you already,
Best wishes
Trust1
Hi joall
Welcome to the forum you will find lots of really friendly people on here so please feel free to ask anything, although no one is medically trained you will find people with similar conditions as your own.
Huw
Hi Joel and Chelle, your issues sound similar to mine. I am a 48 year old female. I was diagnosed with ET a few years ago although suffered symptoms for a couple of years before that. (Pain in sternum area, nausea, general fatigue, pins and needles in left arm). I also have pvt with a total blockage of the portal vein (this was how I was diagnosed). As a result I have extensive varices throughout my body. Thankfully my liver is good though. I have had one oesophageal bleed and rushed to hospital and several banding sessions since and forever more. I also had my spleen removed, August 2017, as they thought it was causing extra blood pressure. I did have a clot in my stomach after my operation to remove the spleen and a bleed in the knee. Now I am on asprin, propanol, antibiotics, ranitidine and hydrea. Most days I feel good and work full time. The asprin is especially a life saver and stops the chest pain. It’s amazing. I’m pretty active and bushwalking and bike ride (apart from a broken ankle which is slowing me down at present). .
Thank you for sharing your stories. It is helpful to hear from others with similar issues. Funnily enough my cousin has had ET for over 20 years. He has different side effects though. I am in Australia and haven’t met anyone who has had all the same Issues as me. I plan to keep living life normally and make the most of everyday. Thanks again. I hope you stay well and fit.
Hi there I’m new to the site but I’m on my second bleed now and been banded four times,through having liver disease,my first bleed was 5 years ago , and the second was four weeks ago ,I knew something was wrong so I went to A and E with a tight chest and unbearable pain in my left shoulder,had a scan when I was in and discovered a non acclusive thrombosis in my portal vein ,the doctors there couldn’t give me blood thinners because my liver disease causes a low white blood cell count,sorry if I’m being a bit long winded after five years with this I think my wife’s heard enough of my liver moaning for a lifetime,lol,so I’ve just received an appointment for a consultation at Birmingham for a possible liver transplant.hope your ok,so there is light at the end of the tunnel is what I’m trying to say.
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