cirrhosis and walking

[Hope1011]

Hi,

I’ve been feeling a bit upset and confused lately. I have compensated liver cirrhosis (auto immune), but I’m not sure what stage I’m at. Luckily, I don’t have varices or anything like that yet. A couple of years ago, I had a triple bypass. My health hasn’t been great, so I haven’t been doing any exercise. Most of the time, I’ve been sitting or lying down.

Since last month, my liver enzymes have gone up again, so my liver specialist increased my prednisolone dose. The higher dose has given me a bit more energy, so over the past week, I’ve started walking. However, I’ve noticed that when walking, my heart rate went up to 152 bpm while climbing a hill (very small hilly road) . I’ve also noticed small red pinprick dots on the skin of my thighs, as well as a small dark purple bruise on the back of my hand, both under the skin.

My question is whether walking might not be good for me. I’ve lost a couple of pounds, but I’m not sure if that’s just fluid, as I’ve found myself rushing to the loo after walking.

Any advice would be greatly appreciated.

Thank you.

[Petrina_gmfc]

Hi hope sorry to hear that you are not feeling great do you have a liver nurse at the hospital that you attend. If you do give her a call she might be able to help you let me know how you get.

[Hope1011 in reply to Petrina_gmfc]

thank you! I used to have access to one but now only have an email contact which they hardly ever respond to. 😔

[Petrina_gmfc in reply to Hope1011]

What hospital do you attend

[Hope1011 in reply to Petrina_gmfc]

QEHB I’ve emailed them see what they come back with.

[Petrina_gmfc in reply to Hope1011]

Let me know how you get on are you on Facebook

[Hope1011 in reply to Petrina_gmfc]

Ok. I’m hardly on facebook. Did have an account many many years ago but not active on it.

[Petrina_gmfc in reply to Hope1011]

Ok what's app there a liver group on there

[Hope1011 in reply to Petrina_gmfc]

Send me the links for both WhatsApp and Facebook please

[Petrina_gmfc in reply to Hope1011]

It is liver group WhatsApp and british liver trust

[Hope1011 in reply to Petrina_gmfc]

Thanks

[Petrina_gmfc in reply to Hope1011]

You are welcome 😊

[Petrina_gmfc in reply to Hope1011]

So sorry to hear what you are going through I am hear if you need to talk

[Petrina_gmfc in reply to Hope1011]

Hi how are things going with you

[Hope1011 in reply to Petrina_gmfc]

I’m ok. Thank you. Seen the gp who has done some further blood tests. And referred me for a scan. 🤞🏻

[Petrina_gmfc in reply to Hope1011]

That's good hope you don't have to wait to long 😊

[Epal1959]

Sounds pretty normal to me , I'm not dismissing your concerns, but walk and excersise ,does that to me . So please don't be concerned I had lived with cirrhosis for almost 20year before I needed major intervention. I am now 4 months post transplant. Your doctors will keep you on track, just follow what the say . That's a good diet and exercise and don't stress .

[Breakfastbabe]

The British Liver Trust have a helpline where you can speak to a liver nurse. They are very helpful. Helpline 0800 652 7330 open 9am to 3pm.

[Aztec632]

Hi I have an autoimmune disease AIH. When I was taking steroids I bruised very easily and had underskin bleeds/purple bruising. Steroids cause your skin to be thin and a simple knock can cause the bruising. It takes a while to heal. Have you had your blood clotting checked?The little pin prick dots I had too again whilst on steroids. They healed after stopping the steroids but even now if I go out into the warm air I get the little red dots but I think this could be due to the meds I am on Azathioprine.

[Hope1011 in reply to Aztec632]

Ah ok. I didn’t realise that steroids could be the cause. Thank you.

[Researchfreak]

good morning hope. I have autoimmune cirrhosis.PBC. I get very breathless very easy along with severe fatigue. It’s part of my illness. I try to do as much as I can for as long as I can but it varies day to day. Sounds like you don’t have much medical intervention. So that could be a good or bad think depending where you are on your journey. I take pred as and when but that’s for RA not liver. For liver I take ursodeoxycholic acid which is the first line meds. Are you cheduled for six monthly us scans or yearly fibroscan. If not that’s great . You may need to contact someone to clarify you position so you can take control of your health. My liver specialist says if I don’t push no one Easley will. Mind you I’m at freeman hospital Newcastle, the top liver hospital with first class people. Hope you get some answers and are able to get best treatment for you. Pester secretaries of the people you have seen they can be really good . Regards

[Hope1011 in reply to Researchfreak]

I am taking several medications. Including 20mg prednisone, tacrolimus plus heart meds. I have 6 monthly scans etc.

[AyrshireK in reply to Hope1011]

You are on similar meds to my hubby post transplant - when his steroids were at their peak (20mg daily) plus 3mg tacrolimus twice daily, blood pressure meds etc. his resting heart rate was 120 + and when even getting dressed he was puffing and panting like he'd run a marathon and his heart rate was really fast. When he resumed short walks he had to find every bench going to take a breath.

[Hope1011 in reply to AyrshireK]

It is tough. Some days you think that nothing is wrong with you and other times it would be like you are in a really bad place. As for me I do look well don’t know why though. Ppl get shocked if they get to find out that I have liver cirrhosis or I just had a triple bypass. ☹️ it’s almost that I am making it up. But can’t complain. It’s nice to perceived as being ’normal’. 🤷‍♀️

[Researchfreak in reply to Hope1011]

As long as they are looking after you. But if you can do any research an think something you’ve read could help you and your situation then reach out to liver team dr who ever. Live the best life you can that day, it may not be perfect but the next day could be better. Regards.

[2022minks]

Start very small with exercise if you have not been active for a while. And I mean slowly and gradually increase week by week do some basic stretches first thing, a 5 min house walk to get moving indoors, then 5 min walks outside and build up xx

[Readlots]

I don’t know where you are in the country, but in West Suffolk they have an excercise support group supervised by nurses for people who have had heart issues. If there is something similar near you it might be a good place to start. They take your blood pressure before you start and would advise in what’s safe and what to avoid. Although they aren’t liver nurses they are medically trained and could at least advise on the blood pressure question. Your GP receptionist might know if there is anything local to you.

[Hope1011 in reply to Readlots]

Sounds really good. I will check if anything is available in our area. Thanks

[Readlots in reply to Hope1011]

Fingers crossed. It would be a shame for you to stop when you’ve found the motivation to start. It’s not easy when you’ve got liver fatigue. Just a little bit of movement every day can help.