Monday, January 15, 2007

O.K., I'm freaking out. I just learned that my sister Vanessa has idiopathic Dilated Cardiomyopathy (DCM) heart disease. Three days before Christmas, she went to the hospital complaining of tiredness, shortness of breath, and nausea. She attributed her symptoms to an asthma attack, which she occasionally has, but she ended up spending four days in the hospital after they determined she was experiencing congestive heart failure caused by ventricular fibrillation and had a case of pneumonia, along with secondary pulmonary hypertension.

My sister is only 40 years old. WTF! There is little history of heart disease in our family that we know of, and her heart problem is not, despite her diabetes and weight issues, related to coronary artery disease (her angioplasty came back clean and her cholesterol levels are low). The doctors think it might be a result of an infection in the heart muscle (possibly the pneumonia), or her sleep apnea. According to the research I've done today since learning of this, it looks like there's a high genetic-familial correlation, and the Cardiomyopathy Association recommends first-degree relatives (that's me) be tested for DCM. So I'm worried about myself, too, in addition to my sister.

So now she's at home, on oxygen and tons of meds, and she's scheduled to receive an implantable cardioverter defibrilator (ICD). The opposite of a pacemaker, which speeds up the heart, this device will detect sped-up, erratic arrythmias and shock the heart in order to 'reset' it to the normal, rhythmic pattern of a healthy heart. The scariest part is that she's been told that there is a 33% chance of full recovery with this treatment plan; otherwise she gets placed on the heart transplant list. (Holy shit, I just made the connection: that's the story line behind the episodes of Grey's Anatomy in which Denny gets an LVAD and subsequently dies. Fuck.)

Feel free to jump in and tell me that everything will be o.k., and neither one of us is going to die an untimely death. Fuck. Seriously, FUCK.

10 comments:

  1. Absolutely everything is going to be OK!

    Don't mean to sound preachy but I think this is a gentle warning - some power out there is saving your sister. Imagine if it had been a full on heart attack and you lost your sister? Shudder!!! I think this is the universe's way of saying we want your sister (and you) to be here so we are giving her a little push is all. Feel free to ignore me if this is annoying.

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  2. Steen was diagnosed with a heart condition

    I made him go to the VA doctor to get checked out after our time in Mexico ( a touch of tourista that wouldnt go away...)

    they listened to his heart and freaked out

    rolled in the carts

    hooked him up

    sent his ekg via video conference to a cardiologist in SF

    put him on a bunch of meds and talked surgery

    different prob than your sis

    but, I understand what youre going through

    scary stuff

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  3. Hey... I wasn't done...

    It is good that she was able to recognize that something was "off" and sought medical help

    now she has a doctor

    they have come up with a protocol for treatment

    Don't worry too far ahead Velma

    One day at a time

    you can't second guess a body

    they are far too complicated

    chill out

    best to your sis

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  4. Anonymous10:14 PM

    Hey V,
    I feel your stress, but that doesn't do you or your sister any good! Just do your best to be supportive while she goes through this. Sounds like you might want to get checked out at some point too. Everything will be okay.....keep positive. Know we are here... if there is anything we can do, let us know.

    Sending Light, Love,
    & Blessings your way,
    Michelle & Varuna

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  5. Everything will be OK, neither one of you will die an untimely death. I know it's terribly frightening, but it looks like they caught it early. Medical science is pretty amazing nowadays; and prayer helps. I'm sending up my prayers for you and your sister.

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  6. PS: forgot to add... remember, Denny's LVAD had a little "help" from Izzie. You don't have any Izzie's around. You'll be okay. You'll get through it.

    ReplyDelete
  7. eileen_sophie6:51 AM

    Hi V,
    I am so sorry about your sister. It is good thing that the doctor's have diagnosed the problem and have a treatment for her. Although she has a 33% chance of full recovery, it is better than no chance. You should get yourself tested, but don't worry too much - it sounds like your sister had other complications that may have caused the condition. Here is an AHA site outlining some of the genetic factors: "http://circ.ahajournals.org/cgi/content/full/108/17/e118". I am here if you need me. My thoughts are with you and your sister. Eileen

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  8. Velma, I am so sorry for you and your family. Health problems are so scary. But you are taking a great approach. Information is power! In case you haven't come across it yet, the National Library of Medicine has compiled a great database of good patient education resources at http://www.medlineplus.gov. If you find that you want to know what the doctors know http://www.pubmed.gov is a great place to start. I work in a medical library--let me know if I can help in any way. You and your sister are in my thoughts.
    Amy

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  9. many, many heartfelt thanks for everyone's good thouhts and sympathy. i'm much calmer today, and more rational. xo

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  10. Hey Velma,
    I sent you an email the other day by hitting reply to the newsletter. I don't know if it went to you so here is my message again.

    "Dear Velma,
    Sounds like she has an early diagnosis. That is very good because the doctors are treating it early.
    There is a very good chance she will live a normal life. Plus there is no guarantee that you will suffer
    the same diagnosis. Try to calm down. Stress never helps. Say a prayer and breathe deep. Remember life comes one day at a time. You both will be fine.
    Love,
    Cheryl~"

    ReplyDelete

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