Dec 7
Laurilyn , Posted on SUPPORT NETWORK Blog

What No One Wants Me To Say.

I wrote this several months ago after receiving the latest round of less than stellar news from my cardiologist. I posted it on my (until then) humorous blog and I subsequently read it to him in its entirety, hoping for some positive solutions or maybe a sense of outrage that I went through this. I love my cardiologist, and I probably caught him off guard, but his response was more along the lines of resigned complacency and "the staff has changed" and "unfortunately, these things can happen." He suggested I share it with the surgeon and staff wherever I choose to have the next surgery. I will certainly do that, but I also feel that others could benefit from my story and that complacency is not the right answer. Maybe mandatory patient advocates assigned to all patients in ICU?  I see him again next month and am not feeling very optimistic. 

The link is to the full story posted on my blog:  WHAT NO ONE WANTS ME TO SAY

  • AHAASAKatie
    I read this through to the end and am deeply grieved that this was your experience. My mother has been hospitalized several times in the last year and on one occasion, the poor level of care provided to her was similar to yours. I completely understand your concerns about a future surgery and want you to know we are hear for you, to listen and encourage as needed. Best Katie
  • MicheleLee
    Thank you. I have been shouting from the rooftops about the quality of care with no echo. I know how you feel. I have been there. I honestly felt I was alone or maybe it was just me. Thank you!
  • edwcare
    From my experience as a caregiver, accompanying doctor visits and managing my wife's care, I believe that your idea of patient advocates is a wonderful idea and not just for ICU patients. I believe that healthcare conglomerates should have ombudsman kind of patient advocate strategies, but I haven't found any. With a dual diagnosis it get worse when the gastro doc and the neuro doc carefully to avoid stepping into each other's field of expertise and give that terrible air of complacency. Primary care docs just try to avoid anything involving specialists and, in doing so, project little care and patient empathy. Even the things that should be simple become difficult. Two days ago I called Walgreens for a refill of one of her meds. They contacted the ARNP for the authorization. This morning, I loaded her into the car since she doesn't to be left alone, fearing another stroke, but found Walgreens is still waiting on a fax back from the NP. Then I made a couple more calls through her primary care doc's phone system to voice my concern since they are closed Fridays and I might not be able to pick up a refill until next Monday. That's complacency coupled with near negligence. But, still, this is complacency in the most simple matter of refilling a prescription, but the general complacency of doctors in general for her care amplifies my irritation. Please, someone should start a system of patient advocates for all patients. That's an idea whose time has come.
  • shirleymom
    Wow. I am so sorry you didn't receive proper care. I was so lucky when I had my open heart surgery. Yes, my doctor was arrogant and called me "honey", but I didn't have to deal with him so much. My time in the ICU after having six bypasses was wonderful. A nurse was with me in the room at all times, and, yes, I did talk his ears off. Morphine does that to me. However, the level of care dropped dramatically after I was transferred to the post-surgery cardiac unit. It was nearly nonexistent! That was almost 13 years ago, and I am still doing fine. I have Kaiser Permanente health coverage, but the heart surgery was at another hospital. Kaiser has treated me like royalty. I am so happy and grateful for their help with my health. So I have had a lot of good and a little bit of bad. When my husband was at Kaiser Roseville's ICU before he died, they treated him like he was their family, and he always got attention -- they were wonderful. I have found that you have to stick up for yourself. If you are feeling uneasy, let the doctors and nurses know how you feel, and that your feelings are very important. Write EVERYTHING down if you have to; you are a good communicator. Take someone with you to all appointments.Getting more opinions on upcoming surgery is your right. I hope everything turns out ok for you.
  • tb45
    Wow. That sounds terrible. It sounds like the care you received was just awful. I have found that, and this is just me, when I am in the hospital and something is wrong, I have to be insistently assertive to get them to do anything. I hope this is not the future of the quality of care for healthcare. I hope things get better for you and for your healthcare system, as nobody, I repeat, nobody, should have to go through that.
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