ablakefl
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ablakefl, April 22,  2021  1:22pm EST

Long term effects of immunosuppression and work status

Hi All - 

I received a new heart in October 2007 at age 43.  I had been diagnosed with 100% AV Block at 33 and then with late stage heart failure in 2003.  It was eventually determined that both were caused by Cardiac Sarcoidosis (after it turned up in my lungs and on my skin as well.  I was able to return to work around 15 months after my transplant and have been blessed with relatively good health up until the past couple of years.  I had to have cataract surgery on both eyes last year and have been getting continuously sick over the past year.  When I get sick it often comes on suddenly and I am completely wiped out.  This has caused a lot of problems with work, and I am scared of losing my job.  I am still about 5 years away from being able to retire and go on medicare.  My wife was diagnosed with heart failure last year, so we need the coverage.  I have been with my current employer for the last 8 years and have a strong LTD plan, but don't know how I would approach it - my heart is still doing great, and when I am not sick I feel great and can do my job well, but I'm getting sick so frequently now it is hard to stay focused and keep the confidence of my employer.  I have shared my condition with some of my co-workers, and they are very understanding, but I feel like I am letting them down when I can't make it to work (even virtually!).  Not sure if anyone has been in this situation, but any advice would be appreciated.

Thanks,

Andy

2 Replies
  • AHAModerator
    AHAModerator, April 22,  2021  4:34pm EST

    Good afternoon, 

    Thank you for joining the Support Network and sharing your story. I am sorry to hear that this is starting to affect your job and causing you stress. I hope you find a sense of community and support here and get some of the advice you are looking for. In the meantime, I can share some resources on Heart Transplants, Staying Motivated, and Stress Management. 

    Please keep us updated on how you are doing! 

    Best, 

    The AHA Team 

  • LaurieWyatt
    LaurieWyatt, May 10,  2021  11:25pm EST

    Hi,

    I had a heart attack at age 48.  I had triple bypass surgery which failed after just two years.  At that time they put in stents and said I was in heart failure.  My heart failure is a result of radiation and chemotherapy i had when I was in my 20's (radiation) and at 31 (chemotherapy).  The stents held for almost 4 years.  I was under a lot of pressure at work and my heart hurt everyday and breathing became difficult,   At age 54 I had a heart transplant.

     

    Back to the work question from Andy....I was in a pretty high position at the company that I had worked at for 28 years.  But a new boss seemed irritated that I has limitations due to my health.  For example, there were some physical team buiding activiities at a sales retreat.  I could not do it and made mention of my heart condition.  From that moment on I feel I fell out of favor with this new boss.  There was a lot of reorganization going on and I was afraid I could lose my job.  This is when the stress was making my hearrt feel so tighy everyday and when my doctor said we needed to see if I qualifed for a heart transplant.

    The best thing i did was to go on short term disabiloty while all the tests were being run.  Not only did I need it for my health, but it is diffiult for an employer to terminate an employee on STD as they could easily get sued for health discrimination.  I did qualify for the transplant and had it done as soon as a heart was available.  Eight days after my surgery, my STD ended and my LTD automatically kicked in.  On that day, my employer sent a letter FED EXP to my home (I was still in ICU) terminating me because I needed a year recovery.

    On LTD you still have health coverage at employee rates for I think it was one year.  Then I signed up for Medicare disability for insurance.  So, I think since you have LTD you could do the same.  If your wife is not covered when on LTD perhaps she could qualify for disability and get Medicare disability too.  Not really sure, but maybe my story helps someway.  I do think if I had not gone on STD when I did I may have been fired and then not had any insurance or income as STD and LTD would not have applied.  

    The work world can be brutal.  I wish you all the best.  And yes, I have many days where I feel like I have been hit by a bus.  I give you a lot of credit for still working.  

     

    Laurie

     

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