I'm in the USA. I have an appointment with a top a specialist next month because my local doctors diagnosed liver fibrosis. The main symptom I have is fatigue. I am able to work but getting though the work day, and or the 40 hour work week is exhausting.
I was wondering what the policies are on leave time, temporary or permanent disability in the USA? But I'd like to know what the policies are in the UK as well.
I feel somewhat able to work but would love to work less and have time to focus on rest and exercise. I also feel that if my life may cut short I'd like to be done with work. I'd rather go to the specialist and have her say it's really not the bad and my local doctors mis-interperated the results...
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Lara86
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Hi Lara I was diagnosed with cirrhosis 3 yrs ago. I haven’t worked since last June. I have fatigue mild he-forgetful can’t concentrate I get nauseous a lot. It’s been real hard dealing with all this. I just applied for ssid disability.I’m in the us. I hope all the best for you god bless. Dave
My advice would be to keep doing as much as you can for as long as you can. Fatigue is an early symptom and doesn't go away. I carried om in work right up to when I had my transplant, although I don't think I would have been in work much longer had a not got one when I did. At the fibrosis stage though, then i'd be tempted to stay in work. If nothing else it will stop you vegetating. That almost compulsion to be somewhere helps motivationally to keep you going at times. Without it, it will be all to easy just to stay in bed or sit on the sofa all day. As things progress, trust me, that is all you'll want to do. Best intensions with staying fit go out of the window then.
If you are finding it difficult to complete the week then here in the uk we can get an Occupational Health referral. That will help identify if any adjustments can be made to make staying in work easier. You can still be dismissed for poor performance due to ill health here. However, an employer needs to make all reasonable efforts to keep you in work as long as possible before doing so. Although there is nothing stopping you from resigning.
On the other side of things there are benefits of being in work, things like sick pay or possibly medical insurance over in the states. I appreciate not all will benefit from those, but they are a useful fall back if you do. You also need somewhere to go back to later, should any treatment be successful.
Hi
My boss has advised me to take I'll health retirement , she has been brilliant. I had already reduced my hours. Everyone in work could see how much pain I was in, not just from liver but fibromyalgia, osteopenia, gastritis, diverticulitis and IBS!!! Please do what's best for you. Take care Lynne
You have to do what’s best for you. I was diagnosed with cirrhosis in 2015 but by summer 2016 I had to give up work due to the fact that I had bleeding varacies that were hard to get under control. I ended up spending one week in work to two weeks in hospital and that was not fair on me or my work colleagues. So I suppose my point is to stay in work for as long as you feel up to it . I also suffer from HE, I live in the UK and had to apply for PIP (the new version of our disability allowance). Hope everything goes well for you
Julia
Hi Lara86,
I think you would need to look at your insurance and also your company's policy about long term disability, since every company has different rules.
My husband retired due to a number of issues he was having, some that might have been caused by cirrhosis. He was eligible for retirement at that time anyway and his health just pushed him to make that decision.
I live in USA and work for the state. I'm not old enough to collect my pension and need at least 8 years for social security retirement. If I qualify for a disability pension I could also get insurance. I don't know if I can get a disability pension but not get social security disability. Right now I'm on my husband's insurance but he's unreliable and unhealthy. I think I just need to keep working, it's just that my job is so unhealthy. If I could just get a break for a while..
Hi Lara86,
We live in the US, too. Can you hold on til the next open enrollment and get your own insurance? I know a lot of places let you shift your insurance if you have life changes - if your coverage under your husband ends, often you can pick up insurance at your own place of work. Our eldest son is in a similar situation regarding insurance and an issue he has. I know our insurance, since the whole obamacare thing has gotten worse and the premiums have more than doubled. Wish we were some of those who somehow got better insurance out of it. Our neighbors use a health insurance broker and seem happy with theirs, but we were at my mother-in-law's and my hubby's oldest sister & her hubby use a health insurance broker and she was mad because he changed her to Advantage even tho she told him she didn't want it - so ??
I don't need to do any of that yet. I'll make more decisions after I talk to the specialist in NYC. The local Drs I have are good for routine care, not this kind of thing.
Yes, if he were to lose his job or his insurance I could add mine back without waiting for open enrollment. I also purchased Aflac for both of us years ago. That would pay for cobra if we were out for extended leaves. We both have state jobs and I have lots of sick time saved up, but one leave would eat up most of it. So long as I'm in paid status I can continue getting my insurance without cobra. He doesn't have as much time but if he ran out we could pick mine up.
I thought about all this stuff years ago. I work at a job that allows me to see what happens to people in America that work hard all their lives but become sick and old and lose their insurance. I put as many safeguards in place as I could.
I'd rather not stop working, I really like my job, it just that I feel like it's killing me sitting behind the desk. I need to get exercise or I will not recover. I mean, I don't know if I will recover anyway, but without exercise I know I won't. I feel like I f I did have at least a leave maybe I could focus more on self care and exercise for a while.
I don't know. I just can't believe any of this. How'd I get here? I don't smoke, drink, use drugs etc.. I mean I drink socially, out with friends but not enough to harm my liver. And even my eating? I never ate that bad, not when I see what everyone around me eats. I've always eaten healthy, don't snack etc. I drink water, coffee and tea. I don't have viral hepatitis. I just don't know how I got here.
Hi Lara86,
I can understand your feelings - my hubby's liver doctor said that those who get cirrhosis due to alcohol are about 1% of all cirrhosis patients. One of my grandmothers died of cirrhosis, non-alcoholic when I was a baby. Hubby's doctor said he wished the media would stop pushing the idea that only drinkers get cirrhosis because it impacts even doctors and attitudes towards patients by doctors and the public.
On the other hand, I tend to be highly irritated by the doctors who have treated my husband and never actually told him that his liver was reacting so very poorly to his drinking. He was sent by ambulance to the hospital in liver and kidney failure after literally months of issues with bleeding and difficulty walking - signs that his liver was failing. Hubby quit drinking once he recovered his wits and the doctors stood at his bedside and told him he couldn't keep drinking if he wanted to live. Oh well, coulda, shoulda, woulda.
Wish I had been as smart as you and prepared us better for our current retirement and health, especially since I've been shoveling snow for 2 days and my little electric snowblower quit yesterday <sigh>. My winter excercise - intense these last 2 days - went out 3x yesterday and just came in from the 4th time out shoveling-hubby did help with driveway a bit, he does the back decks and I worry about him overdoing. Dishwasher is running so not enough hot water for a nice hot relaxing bath
It has to be difficult to worry about this when you lived relatively healthy . I will tell you what my hubby's doctor told him - cirrhosis, while a very serious condition, does not mean you only have months. I know my hubby's causes and yours are different, but the doctor said this is true for most with cirrhosis and he said transplants may be options for many. Right now we still go see the liver doctor every 6 months to make sure if he develops liver cancer they catch it soonest.
I will be keeping you in my thoughts, especially during May and hoping your doctor's appointment gives you more to be hopeful about.
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Still in the dark 
Returning to work after transplant - working from home
1yr 3 months Sober but still Scared
Still here and in excruciating pain
Couple of questions if you don't min ....
