karessamom
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karessamom, December 22,  2016  5:11am EST

Disability with afib?

Just curious if it would even be possible to get disability with my afib?? Currently I'm 57 work in a call center where it's required that you're there 8 hrs per day every day. Fortunately I sit most of the time and usually I don't have much of a problem on good days but I still get extremely tired, have breathing issues and sometimes it's just phyically hard to move around when i'm having bad days. I know I put a lot of pressure on myself which doesn't help and I'm always worried when I have to take off for Drs appts etc. I could just quit but unfortunately I can't afford to do that. I've also thought long and deep about trying to find some other line of work that I could do that wouldn't have as much pressure (mental) but then I'd be on feet all day (ie cashier or something) and I don't think I could phyically tolorate it. Symptoms mostly are the breathing issues and getting tired. I do have a PM which has controlled the lightheadedness and wanting to pass out. I've previously had an ablation, open heart surgery maze procedure, been on propafenone now on amiodarone as a last resort and now waiting to see what else if anything they can do to help with the symptoms i'm having. just looking at options that I have. I like my job and it's not that taxing on me but what is is the constant fear that the more I have to request time off i'll lose my job. I know I do have FLMA available to me and they've been good with that before but again I don't get paid for that. (I do have enough credits for it but I don't think I meet the "disabled" criteria--that was my question) 
  • Thumper2
    Thumper2, December 28,  2016  1:42am EST
    With regard to Tikosyn, my husband has been taking it for the last three years and it has kept him in sinus rhythm.  He had to locate a cardiologist who had been trained in the use of this drug, and it's slightly bothersome to have to remember to take a pill every 12 hours, every day, but it has worked for him.  Thumper2 (Judy)
  • GMuller41
    GMuller41, December 27,  2016  2:48am EST
    onna66,Tikosyn is a strong anti-arrythmic drug that is prescribed only for highly symptomatic versions of Afib. the very serious side effect mentioned refers to Torsade de Pointes. It can be fatal.Suggest you read this Medication Guide for Tikosyn put out by the FDA http://www.fda.gov/downloads/drugs/drugsafety/ucm266314.pdf
  • ohligerj
    ohligerj, December 26,  2016  9:31am EST
    My dr. made me stay in the the hospital for 3 days when I started on sotalol, and when that quit working, back in the the hospital for 3 days starting  tiksoyn. I guess in some people these medications can cause a fatal heart rhythm  that requires immediate medical attention. The tiksoyn has a very small time window in which you have to take each dose. And if I miss 2 doses its back in the hospital for 3 days again.
  • onna66
    onna66, December 26,  2016  8:48am EST
    What is the one serious side effect of Tikosyn?  I have been taking it since May of this yrs.
  • sls642
    sls642, December 25,  2016  10:26pm EST
    I am in no way connected to Pfizer, the maker of Tikosyn. Just wanted to share a few experiences in the hope they might help others. Went through so many difficult years with Afib and explored pretty much every option available. Ran into docs who didn't appreciate that some people simply couldn't have a decent life with this condition. I found this attitude very surprising.  In my comment, I left out most of my story, just wanted to get to the end game. Tikosyn has a specific protocol and until recently, not many doctors were allowed to prescribe it. It also has one very serious side effect which I decided was not likely to effect me, so it was worth trying. Of course. I also am always aware (or try to be) of the various factors that can lead to Afib and avoid them. So it's not just Tikosyn it's also paying attention to everything in day to day life that effects my heart. .
  • masonc
    masonc, December 25,  2016  1:46pm EST
    sls642: I have this problem in reading on the internet:How can I be sure that you are not marketing Tikosyn for the Pfizer drug company?Your post *could* be read as a very professional bit of marketing.Tikosyn is a Class III antiarrythmic (as is Amiodarone) -- which proves nothing . . . but
  • karessamom
    karessamom, December 25,  2016  4:05am EST
    Thank you all for your comments for the most part I've been thinking along the same lines as most of you. I'm glad I brought up this discussion while it's not going to be helpful too much for me (I'm going to continue to push thru and work until I'm old enough to retire most likely in another 10 years unless something happens in the meantime to change things.  if I make it that long lol) It may be helpful to others in very much worse shape than I am. Hopefully with my new doctor that I will be seeing next year they will be able to come up with something else--I really don't like being on the amiodarone after all i've heard about it however i'm not sure what other choices i have, since all the other medicines I can safely take have either failed or I can't take. If I wasn't so symptomatic I probably wouldn't be so worried about it. not that i'm worried but I just bugs me that I sometimes can't walk accross the room without getting out of breath and my heart feeling like it's dancing all over the place. or I may just have to start accepting my limitations and deal with it. Sitting down, stopping to rest etc seems to help but that interfers with life sometimes and doesn't make me a very good mom or housewife. lol As far as ablation goes, I've mentioned this before but I have a patch in the middle of my heart so it's really tough for them to ablate without disturbing it. I've also had a Cox maze prodcedure last year which helped for all of about 9-10 months max. Hopefully this new year will bring new changes I keep hoping and praying. Thank you again for all!
  • OUMike
    OUMike, December 24,  2016  11:09am EST
    Skismosis,Greetings.Wow! The disability decision you outlined does not seem fair/equitable. I am not an attorney, but personal business experience says you might consider the following:--Did you have any disability insurance at work that might cover some of your income?--Contact the nearest "No Charge'" public legal service that are in most (maybe all) states;--Review your case in detail to get a "no charge" initial opinion on appealing the disability decision;--If your case has merit, consider hiring: a) a pro bono attorney to represent you and appeal the disability decision; or b) hire an  attorney who charges only if they win your case and offer reasonable terms to pay the fee after the case is won and you are receiving  unemployment checks.--If there is no relief as outlined above, the attorney may have other ideas how to protect yourself concerning financial matters;--Contact the nearest consumer credit counseling service in your area for free financial guidance on ways to protect  yourself concerning any outstanding bills/debts, etc, as well as possible leads and referrals to employment opportunities.Hope these thoughts will be of help and hope. All the best to you and Merry Christmas.OUMike
  • sls642
    sls642, December 24,  2016  11:09am EST
    Have had a long history of Afib going back almost 20 years. Have been in multiple top tier teaching hospitals and had more cardiologists, SR specialists, etc.,  than I can remember. Luckily for me, I had/have excellent insurance and enough resources to do whatever was necessary in health care world. My Afib is especially hard on me becuse of a very leaky mitral valve. Bad combination. Have been out of sinus rhythm a lot over the years and sometimes for extended periods but always cardioverted back. Never chemically, that didn't do it. Caused more harm than good. Got a lot of good and bad advice along the way and eventually took charge of my own health decisions. I could write pages about my journey but will just make a couple of points. Amiodarone didn't hold me and caused multiple side effects which took years to eliminate from my body. It collected in my thyroid, the bottom of my feet and eyes. Went off it and onto higher doses of Coreg. Didn't work either. Finally, about six years ago, a doc in a major teaching hospital suggested Tikosyn. I researched it (never go anywhere without my laptop) and agreed. I don't do what any doc tells me without extensive research. Learned that the hard way. I've hard first rate docs from the best med schools and bad ones. Had good docs from not so great med schools and bad ones. It's a crap shoot. Generally ,however, your odds are better in teaching hospitals who have docs with serious resumes.The good news is the Tikosyn has held me in SR for six years. Even stopped the occasional palpitations I had experienced my entire adult life. Since I haven't seen many discussions about Tikosyn on the board, thought I would bring it up.I also started keeping a journal when all of this began to see if there was a reason/pattern for the Afib episodes. Since I generally knew when I went out of SR, it was a matter of identifying what was going on and trying to control it. I have seen these referred to as "triggers" and in my case, I figured them out after a number of bad episodes. Avoiding them was more of a challenge. I was in a very high stress job heading a large organization so I reluctantly made the decision to retire.  I was in my early 50's at the time and my focus became stopping my Afiib.. It was not something i was willing to live with and felt there had to be a solution. So far, Tikosyn seems to be it. That might change of course but so far, it has been my answer. Haven't had any side effects either.I don't know about  SSD with Afib but I would assume that if it keeps you from working, you could eventually prevail. You will need pertinent medical records and a good attorney. Most everyone is initially denied but if you pursue your case, the success rate is pretty high.
  • zippy
    zippy, December 24,  2016  7:34am EST
    I would HIGHLY recommend getting a second/third opinion~!  There are options, thank God, for those with long standing afib.  Stay in action, be proactive, and get to another doctor or two.  I had been in afib over a year, got my first ablation from Dr. Andrea Natale, which worked for 7 months, until I had other, extreme trauma to my body.Just had my second ablation this week - so far, so good.  Heart rate is 65-70 instead of 135-145All the best to you~!Zippy
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