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Nobody promised me a rose garden, but I didn’t expect this.

March 5, 2012

When I had a heart attack, a little over a year ago, I knew recovery would have it’s challenges, but I was optimistic about recovery.  After all, I had prompt revascularization and great medical care.  My cardiologist told me in 6 months we’d see no difference on echo and I’d be back to normal.  I had overcome serious injury in the past through hard work in rehab and perseverance.  I’d been sick before and had recovered.

No one prepared me for the possibility of a lifetime of chronic angina following my heart attack.  They said the vessel was open.  I did have evidence of some coronary artery spasm near my stents and was put on diltiazem to help that.  I was given nitroglycerin tablets and sent home with instructions to call EMS if I had to take 3 of them.  But no one talked about the day to day aches that might come up.  In fact, as my chest pains became more frequent and subsequent angiogram was clear my cardiologist began to express doubt that the pains were cardiac.  I told him my main angina trigger was anxiety and stress and he said if it came on with exercise that was definitely angina but said the emotional stuff, “I don’t know about that.”  This despite pamphlets in the waiting room of his office listing strong emotion and stress as common triggers of angina.

As time went on and I had chest pain more often and my fatigue grew worse despite the fact I was exercising regularly, much more consistently than before my heart attack.  I was eating better.  I had done a lot to reduce my stress.  The mixed messages from my doctor confused me.  He took my pain seriously and treated me fairly aggressively, yet he would still cast doubt by telling me things like he was trying to prevent me from becoming a “cardiac cripple.”  He explained that medical professionals like myself have a hard time because we know too much and worry too much.  Later when I told him I was unable to continue at my job and was contemplating applying for disability, he said he supported me.  He promised to complete paperwork for me and offered to write “a nice letter.” After several weeks delay, his nurse called me and told me he didn’t want to fill out the paperwork because I had “no cardiac restrictions for work.”

Over time I was on this seesaw, vacillating between belief that I had a legitimate cardiac problem and belief that my anxiety was making me sick.  My coworkers, who originally had been supportive, became increasingly resentful of my continued absences.  When I was at work I encountered more and more resistance from them.  In the end I started to hear things they were saying about me when I wasn’t there that were painful to hear.

Nothing has been more destructive to my recovery and continued functioning than the doubt from my doctors and my doubt of myself.  I continue to have good days and bad.  We have aggressively titrated my medications and tried different combinations.  I have worked closely with my psychiatrist to do everything we can to ensure depression and anxiety are not worsening my condition.  I still exercise daily and incorporated yoga several times a week.  I’m still on that seesaw, but know when I have chest pain daily that responds to nitroglycerin, it’s not all in my head.

This last hospitalization was the first time doctors started to talk to me about the chronic nature of my pain.  One doctor (not so diplomatically) told me “It’s going to hurt.  We can’t do anything about that.”  My cardiologist told me my situation was complicated and it was time for a second opinion.  He even suggested going to the Mayo Clinic.  Confusing coming from the guy who had his nurse tell me I had “no limitations.”  When I saw my second opinion doctor, we talked frankly about the chronic nature of the pain and the unfortunate necessity for these periodic “Rule out MI” hospitalizations.  He told me over time I would learn what pain is significant and what is the usual chronic stuff.

I’ve been able to go back to my psychotherapist recently and he is bolstering my trust in myself and my perceptions.  I think this belief in ourselves is a challenge most people with a chronic illness face.  Once the acute phase of an illness is over, people expect you to get back to normal.  When that doesn’t happen, people become less supportive.

I can’t lose hope.  I know I am strong.  I have been through many difficulties in my life and have managed to overcome them.  That doesn’t mean they didn’t affect me.  But I live my life with optimism and hope that I will be able to cope with what comes my way and live a worthwhile life.  I have people to love who love me.  I learn everything I can from whatever comes my way.  I’ve lost friends, but I have made new friends who accept me as I am.  My continuing challenge is to accept myself.

3 Comments leave one →
  1. Pam permalink
    March 5, 2012 9:26 am

    I totally can identify with what you have and are going through, and it actually happens to more women than you would think. Angina is a real challenge, and hard to prove on tests. Many cardiologists don’t understand the emotional impact that it has on every aspect of your life if you have it significantly, and the impact on your work. Most regular people cannot identify with the challenges, especially from work, because of seeing the up and down, and we compound when we pretend to feel better than we do (tho that is necessary). Truly a double edged sword. The forum WomenHeart Support Community on Inspire is what helped me tremendously, with support from women who have been there, done that, and with updated information from ladies who are research gurus. Hang in there !

  2. Ruth permalink
    March 5, 2012 12:27 pm

    well said!

  3. Carolyn Thomas permalink
    March 10, 2012 10:50 am

    Caryl, what a powerful story yours is, and how maddeningly stereotypical your doctors’ reactions have been. The emotional fallout post-heart attack is utterly under-appeciated by many health care professionals. Good luck to you – hang in there!

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