Portal hypertension

Hi, I was diagnosed with cirrhosis just over a year ago (thought to have been caused by alcohol). I also have portal hypertension which was mercifully noticed by damn good radiologist following an MRI for an unrelated issue.

Anyway, I'm now on propranolol to lower my blood pressure and having usual tests for oesophageal varices etc and so far so good. My consultant told me from the outset that I shouldn't fly, take exercise that increases my heart rate and generally take it easy, less a vein ruptures and the worst happens. I've since seen another consultant who is a specialist in portal hypertension and he says he has never heard of anyone having an incident flying, or whilst exercising....

It's difficult to know who's advice to take... Once someone tells you something could be life threatening, it's difficult to feel confident in these pursuits when someone else tells you it isn't

Has anyone else been given advice from their consultants about living with portal hypertension?

12 Replies

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  • I have had portal hypertension for quite a few years and take carvedilol. I have never been told anything about not doing exercise, in fact, I'm encouraged to do so. In terms of flying, for longer haul flights I usually try and make sure I see my consultant in good time before flying, let them know and sometimes they request for me to have an endoscopy to check on the varices as these can sometimes cause problems. Other than that, just make sure you have travel insurance that covers you.

    all the best

    Jen

  • I've also been diagnosed with portal hypertension along with cirrhosis, and have been told I should exercise and have never been told not to fly, though I would agree it's worth mentioning if you're going on a long-haul holiday and also that you are covered with travel insurance just in case. But I would imagine the varices could bleed any time, not just when you are flying, if they're going to go they're going to go.

    Since diagnosis my personal view on life is to live it whilst I can and not procrastinate over the what ifs....

    Good luck.

  • Good philosophy on life, apart from work, I know live for the day.

  • Hi also have cirroshiss and portal hypertension, you are right if they are going to go they will, as for me had first endoscopy told no varices seen exactly 1 month to the day lost 4 pints blood through mouth, thankfully no memory of this just lucky to be alive, also told to just walk with no extreme exercise, like you also on propanol don't know if they are working, as had varices burnt away in may called

    APC procedure new to this forum glad of having people who undertand. Be well angse

  • I have been a nurse for nearly 40 years and now work in a large private hospital in Bangkok, I was diagnosed with cirrhosis and portal hypertension about two years ago, had two bleeds and numerous varicial bandings. I have handpicked two excellent doctors one a haematologist and the other a hepatologist and gastroenterologist.

    Both these docs have encouraged me to exercise and have not said I can't fly, in fact I fly over Asia frequently and to the UK every year, no problems encountered. But I do have specialist travel insurance.

    So if my experience is typical you have no problems.

  • I have portal hypertension following HVC (thankfully cured) and my consultant strongly reccommended leading an active life with excercise taking an important role. The fitter you are if and when a transplant is required the better :-). As far as propanolol is concerned, I take them but aren't convinced of the efficacy. They only have a short time in the body. They haven't reduced any symptoms like feeling there is something in the throat, and haven't stopped the varices progressing from grade 0 to grade 3 in less than a year. I think everyone elses advice of "carry on living" is the best and don't worry lol

  • Hi,

    My 3 year old daughter has portal hypertension and is taking propranolol. The advice from the liver centre consultants at Kings is to exercise but avoid contact sports (due to enlarged spleen and possibility of rupture) and that it would be advisable to have an endoscopy a month or so before flying to check on varices.

    Take care.

  • I've been told you can exercise a bit , I've been given a blood transfusion when born 58 years ago, and the blood I got carries the Hepatitis B Virus, I don't know much about livers, but last time I got a scan it was fatty my liver, so I've to go get another scan and they're putting me on treatment to keep the virus at bay now, I'm new to all of this, as I'm not a drinker gave up years ago, but they took a fibroscan of my liver the other week and it seems to be okay so just waiting to get outside liver scan done, it's scary , all to do with rotten blood years ago I've been told to sue for compensation but don't know how to go about it I'm going to see citizens advice this week and see what help they can do, hope you figure out what it is you have the problem with I wish you all the luck in the world bless everyone that is going through this love to everyone xxxxxxxxxx

  • Hi Rachel. I have Hepatitis B contracted over 30 years ago and am encouraged to exercise within my limits. It depends more on your level of liver damage and overall fitness and health. The infection itself has nothing to do with what exercise you can do except with a blood borne virus such as Hep B it would be advisable not to be involved in contact sports that might involve cuts and bleeding.

    Screening of bloods for the Hep B virus only began about 45 years ago, so if your transfusion was 58 years ago it may be difficult to prove negligence. But worth investigating with the help of lawyers experienced in medical negligence. The Citizens Advice people may, in innocence, misdirect you to the Skipton Fund for compensation which is for those infected with Hepatitis C while in NHS care,

    May I ask what Hep B treatment you are on and what degree of liver damage have you suffered through not being on treatment since birth. The chronic hep B will have contributed to fat deposits in your liver. Well done not adding alcohol to the mix as that would be devastating.

  • I'm just going to get put on treatment in the next couple of weeks, I didn't find out, I had the virus, until 1982, just the year after my mum died, she never told me I had the virus or did my doctors, it was kept quiet, as back then we live in a small village and if they had found out there probably would have been trouble, I gave birth to my daughter and that was in 1976, and they didn't tell me about the virus, it was told to me when I gave a pint of blood at the blood bank that my friend gave blood to, the blood transfusion people my doctor a new doctor then told me but he just told me it was an Australian antigen, I was not told it was hep b virus until I had my son in 1985, I was then kept away from other mothers and my son was given injections, my motherinlaws a nurse so she dealt with it all, then I got a letter from a doctor Battachyra at the vic in Kirkcaldy and he explained it at last, then my family let the secret out, they knew about it, since then I've had bloods taken, and scans every year, and it rose years back but it's just started now to get high the virus, level, I understand it more now, they've ordered a scan off the outside again, as it was fatty the last time, my fibroscan came back normal the other week, that's my first one, there's so slow here in scotland, can you give some advice you seem to know about it all can I die off this eventually doctor Battachyra says it could reverse on me or liver cancer, but the blood borne nurses said I've to ask to be put on treatment as it's better to keep the virus under control , this is all new ground to me thank you you're a lovely person letting me know things xxxxxxxxxxx rachel84

  • What a shame you were kept in the dark. When your son was born in the mid 80s there were antiviral drugs available that you could, and should, have taken to suppress the virus and keep it from damaging your liver.

    Am glad to hear your children have been vaccinated.

    You must start treatment, ideally a drug called Tenofovir which is the most up to date. Take it once a day, every day, for life, and it should make the virus undetectable in your blood. Once the virus is undetectable (not cured, there is no cure) it should reduce your risk of further damage. Yes you can progress to liver cancer from Hepatitis B, which is why you need to be on antivirals.

    If you have had the virus for 58 years your liver will be damaged, though hopefully it is compensating for the damage and you have no side effects.

    If you don't drink alcohol, eat a healthy diet and try to limit any medication you take (apart from the antivirals) you will keep stress on your liver to a minimum. Ask to be prescribed Calcium and Vitamin D3 supplements as Tenofovir can affect calcium levels. And make sure you have regular blood tests to see how your body is coping, and Imaging scans too to check on liver health.

  • I've got osteo-arthritis, it started after my 2 Spine Operations, for prolapsed discs, so I will have to watch the calcium levels, I had a hysterectomy and I fell out of bed a few months ago and the pain in my shoulder and upper arm is painful, I think it's arthritis, but my doctor thinks it's a fractured humerus, I've to get the results on Thursday morning, my hysterectomy was the year 2000 so they're looking out for osteoporosis, as the humerus relates to it, god, I think what a life I've had , one thing after another, my mum should never have had children, she took rheumatic fever, when she was young, she had 10 of us altogether a still born and a miscarriage the remaining 8 of us survived she died when she was 66 her heart gave in, she just lived for her children , my father died when I was 16 of emphysema he was 56 , I've had a lot of sadness in my life last year , losing family, but I'm glad now, I've got this sorted and I'm glad I gave up drinking years ago, I didn't drink a lot, but I just changed my life, one day , and now exercise and eat healthier, my husbands not a drinker, and doesn't smoke thank god, so I'm glad of that , thank you , I'm glad I contacted this site , it's helped , and meeting new friends, I hope you're not suffering too much I didn't understand earlier what the question refereed to hypertension m I'm going to see my doctor this week and I want answers , J will let you know my friend xxxxxxx

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