Holding a job or going back to work with Cirrohsis

My goodness everyone what a year it has been. My Husband (36) has Cirrohsis. He has sustained from alcohol for close to 6 months now.His ascites is gone and jaundiced noticeably gone. Billi- is a 3.2- huge change from last year at this time 14.6. He still has his hernia, gets fatigued from time to time. But feels well and watches our three young children daily( since I went back to work). We applied for disability with a law firm based out of Utah. We still haven't heard anything, SS and the attorneys says our case is still pending :/ Any advice on this would be appreciated.

My question is, have any of you living with Cirrohsis continued to work or have gone back to work? My husband is very hopeful and desperate to get back in the game. He loves staying home with the girls but feels he would benefit from working again.


Thanks for all the guidance I have received from all of your stories this past year.

K

Post Edited (Finding_the_silverlinings) : 7/19/2014 3:37:37 PM (GMT-6)

So sorry I haven't posted much. Mainly because I started working and my hours are all over the place :/ Just know through the dark days you all gave much light :)

That concerns me about the working quarter thing regarding disability. He hasn't worked since last July. We are applying for "back pay".

Doing our best to stay focused and realistic...

I'm not able to work at all myself due to the combination of my ESLD and advanced connective tissue disease slowly destroying all my joints throughout my body. The fatigue is debilitating as well. I have the full set of: advanced cirrhosis, tense ascites, GI bleeding and now HRS that has turned into acute renal failure complicated with acute tubular necrosis.

Because I have PSC though, I still have just enough healthy portions of my liver left that causes me to not meet the SSDI ESLD requirements - INR,bilirubin too low & albumin too high. Unbelievable! They have turned me down and I've paid hundreds of thousands of dollars into the SS insurance tax program over the decades I've worked. Quite the system we have in this country.

You guys all make perfect sense. I guess it has been rough for us since living this "new normal" we are just not sure what others have gone through. This disease is nasty and not very forgiving.
We have seen a good improvement in my Husband's overall appearance and physical energy. However we will still of course air on a side of caution.

Like always hearing everyone's experiences has been very helpful- Thanks!!!

Post Edited (Finding_the_silverlinings) : 7/20/2014 7:31:05 PM (GMT-6)

Monty,
I just started a thread of your own for you. Look for it and you will see I cut and pasted your intro there. Hope that helps ! Big Hugs

FTS, Your husband needs to have a doctor stating his condition is terminal. That word (Terminal) carries a lot of weight in the decision making process for SS. Hiring a attorney was a good idea although it wasn't needed in my case. My wife and family drove me to the SS office to apply (I don't recall being there to this day). The woman at the desk was horrified and shocked. A total of 5 doctors had looked at me and my prognosis was 3 months max survivability. I was in my second month into diagnosis when I applied.

I was diagnosed with ESLD and Renal failure due to alcoholism in 2008. I struggled to survive for the first few years but currently am glad to say that I'm off the list for transplant. I still suffer from HE but keep it managed with Lactulose and Xifaxin. I eat properly and keep myself occupied with gardening and small projects. I was a iron worker by trade for the last 26 years so being at home was a challenge for me. I have a stepchild with my current wife and she keeps me pretty busy during the summer months. My condition with Encephalopathy, Tired feeling and susceptibility to heavy bleeding prevents me from doing my former work or pretty much anything else.

Beware, There is a fine line also. If he goes back to work and has a recurrence with liver issues and he tries to apply again for SS it will be equally as hard to get back on it. I'm not sure how the insurance companies deal with preexisting conditions with our new health care should he decide to go back to work. Bigger question is how will the company he works for look at the potential losses of hiring him? The politically correct might say "It shouldn't matter" but we all know what the bottom line is, Sick people kill profits. Not trying to be a downer but explaining the realities of the system. Each of us are different with different obstacles and he may be well enough to get back out in the work force but you must weigh your options carefully at this critical juncture.

A difficult thing for me to accept was feeling like I was one of those who was living on a hand out. I detested the idea of having any assistance. Particularly growing up knowing folks who abused the system or never worked a day in their lives and still pick up a check monthly. Thing is, I worked tirelessly and paid more than my share since I was 14 years old. Never drew a day of unemployment. My money and I need it, Not a entitlement as I see it. They also gave me a handicap parking placard. Threw it in the trash. I'll crawl before I take the space of someone who has no legs. I have two legs that are fully functional, It's my head and liver that's screwed up. This disease affects everything and pride is usually the first to go for most of us effected. I still have pride but it is much tamer by far today. I'm alive and happy. Yes, things could be better, but I'm of the opinion that things always could be better no matter the position your in.

FTS,

I want to second what Ziff says. My dad and Ziff are so alike in their thinking. My dad has stopped working since last year but certainly not by choice. He worked 45 years and not collected a day of unemployment or anything else. He also finds it difficult that he is getting help or seen as a person that can't do things anymore. He is a very proud person but like Ziff said, it's what they worked for all their lives. For this moment. When it is needed.

Your right Ziff, pride gets tamer, not because it goes away but realizing we help others and one day we are in that boat. Nothing wrong with a little help when you have done so for others.

Having said all that, Hopefully he can get so well that at 36 he can continue on to a normal working life.

I have compensated cirrhosis, primary cause is unknown but its down to either PSC or a long term blockage I had. I have never stopped working, even when my primary care doctor told me to take time off when they were not sure what was going on.

I think it depends on how you feel. I work 6 days a week 12 hour days right now, and I am fine. But I am not feeling fatigue etc that most do.

I've been on disability since 2000, after interferon ribavirin treatment for a year that I never really recovered from. It wasn't until a few years ago that I became decompensated, but now my levels are so good I, too, want to go back to work. I'm feeling better most days. It's the times when I can't get out of bed for a few days that would ruin my chances at a new job. Since it's private insurance and I receive 85% of my take home pay, once I go off, I'm ineligible to get it again, so it makes me scared to take the chance. I wish it wasn't an "all or nothing" situation. I highly doubt I could take the strain of being a paralegal again, anyway, but I do have other skills. Like ML's hubbie, I used to do websites ... but don't have the mind for it any more. My concentration is not there. It's a tough choice and I wish you well in making the best one for you.

I had a huge advantage. I'm self employed and only took work without early deadlines. Plus, people knew and could see how sick I was. They made allowances.

MamaLama that is a great suggestion. I will look into some volunteer work for him. Good thinking! Thanks :)

I think of this on our Forum as one of my volunteer efforts....a way to give back to the powers that be for getting Mike his transplant through his state insurance. Who can ever repay that miracle...and then the treatment drugs....another miracle. I do 2 other organization's web support as a volunteer also. And and and. It makes me feel like I'm helping others as we have been helped...and keeps me active. I wish I could get Mike to do some volunteer stuff, but he is just "coming back" to himself.

Hugs, ML

Totally.