Help for Healing

Bitter & Sweet, living daily with grief


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Anger with every Paragraph

As I continue to pursue my next career step, I was advised to read a few books. I just finished “Being Mortal” by Atul Gawande which I loved every minute of. I felt validated with a lot of the beliefs I’ve come to in this work, and I learned some new things where I am trying to make adjustments in my thought process as I try to assist others.

Now I am reading “An American Sickness” by Elisabeth Rosenthal. It is also validating, but it comes with extreme frustration. Almost every paragraph I read makes me angry all over again, learning about the things that happen in our medical system across our country.  Things that I have suspected and felt, but now know there is plenty of fact to back it up.

The kicker was reading about Medicare and the observation status problem for patients. It was exactly what happened with my father before Thanksgiving. I blogged about it and the madness of trying to get his care covered by insurance. The last paragraph of that chapter informed me of a law that Obama passed in 2015. Had I known about it, I would have kicked that hospital’s ass. They were definitely not even close to compliant, but were very clear what they would NOT do to help us because of their strict compliance to law. I mean, I do a pretty good job fighting for my dad, but if I keep learning more information, I really feel sorry for these folks in the future. Education is power!

I have mentioned several times in blogs and my books how much I respect my doctor. She is incredibly knowledgeable and very thorough. She truly cares about me and my family. But sometimes I have run ins with the staff, which unfortunately makes the same systematic mistakes that most health systems do.

This last week was very frustrating and maddening. Hell, I was ridiculously pissed off. When you are sick and scared, the last thing you need is to have unnecessary conflict with your medical team. I was told over four days, by three different health professionals on the phone that I definitely had the respiratory flu. I was prescribed antibiotics, told by another to throw them out, then told that the second doctor shouldn’t have had me throw them out.  By day four, I wasn’t any better with any of the medications I was taking, prescribed or otherwise.

In spite of being treated like an over-reactive hypochondriac, I called back yet again. I was finally sent to get a chest x-ray, which was the first time I had any kind of medical person actually see me. Pneumonia. Crap. Now they don’t know if I had the flu and it caused pneumonia, or I just had pneumonia all along. And it is too late to be swabbed now so I will never know. It’s important though because the contagion and treatment are very different for the two conditions.

I am going in tomorrow, a week after I first called to see the doc, just to make sure things are going in the right direction. I was able to talk to my favorite nurse today and she explained a lot to me. She explained that people tend to say that everyone gets pneumonia now but that it is indeed life threatening. I probably won’t fully recover for six months. And I absolutely have to sleep and rest and take it easy. (None of this was told to me before now.)

That’s always hard for me. My life requires a lot of time commitment and energy. If I don’t feel well, it is easier for me to hold back. But when I feel ok, it is difficult for me to remember that I am not fully recovered and I still need to take it easy. The steroid phase is really a factor as well. I remember vividly from Tim that steroids treat symptoms but not the disease. Tim looked great and worked but he was literally a few weeks away from death.

My poor dog doesn’t understand why she doesn’t get her long walks. And I have to just keep telling myself to slow down, rest, expect less of myself, etc.. I will feel better though after having the doc actually see me in person tomorrow as well.

Always try to educate yourself as the consumer. Unfortunately, even at the best of places, you still have to fight and advocate for yourself or your loved one. Your life could literally depend on it.


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Being Mortal

One of the big books on death/dying is “Being Mortal” by Atul Gawande. Recently, Hospice sponsored a viewing of a PBS show Frontline that interviewed this doctor and several other “specialists.” It was produced only a few years ago. (It is available online for viewing at pbs.com if you are interested. I will have a link at the end of the blog.)

I don’t usually get emotional much at these events because I am so consistently immersed in the topic, but this one got to me. There was a video of a man who they were discussing Bilirubin levels with. He was strikingly yellow from jaundice. It all came back to me with a rush. All the same lingo, walking in and seeing Tim’s face and body in strikingly yellow color. That was it, I was done for.

This is not meant to be criticism, just observation and it was fascinating to me. Here was this documentary with doctors, some actually oncology doctors. One was considered a “palliative care expert.” Their ability to handle medical information and dying patients was a bit abysmal. Most of them deal with it day after day, and yet that had no grasp on how to handle the dying with dignity. In fact, usually the patients were much more comfortable than the medical teams working with them.

The author and narrator said it himself. Three doctors in his own family. When terminal illness struck, not one of them knew what to do. Wow.

One of the things I walked away with though, is what I’ve heard over and over again. Doctors feel like anything less than cure is a failure. Of course everyone knows we eventually die, yet somehow they expect themselves to do the impossible. What’s worse yet, is that living forever (in any condition) isn’t even desirable for most. What a mountain of a problem.

Yet I felt hopeful. Here is a doctor that has put his failures on TV for the world to see. That is extremely rare in our culture. In fact, the scene opens with a family who has lost someone relatively young. He tells the widower that he outright lied to his wife. He gave her hope to live when there was none. He couldn’t tell her the truth. Being willing to admit all of that in hindsight though, is incredibly brave in my opinion. And it leaves the door wide open for change and improvement.

The biggest lesson from the documentary, was that the conversations all were happening much, much too late in the game. By the time the doctors faced the truth, it left little or no time for people to attack their bucket lists, say goodbye, get their affairs in order.

The other thing I took away, was how incredibly blessed and lucky Tim and I were. Somehow, we knew to always ask about prognosis. We were able to make the most possible out of the five months we had. We had lots of docs and medical peeps who were honest and open with us. At the very end, our Hospice nurse Patty was beyond outstanding when Tim was grappling with the truth of the end of his mortal life. She didn’t stumble, not even a tiny bit. She was strong and steadfast and honest.

One of the closing comments was short but profound. We need to treat persons, not patients. Period.

My last observation was this: Someone needs to design those damn hospital beds for the end of life that are double in size. It is beyond heartbreaking to admit the reality and not be able to climb in next to your loved one at such a sacred time. Footage after footage showed people in their dying hours with their loving support next to them, but not near enough. If someone wants to market that little nugget, please feel free but mention me when you make your millions.

Thanks Dr. Gawande for making such a courageous documentary.

Link: http://www.pbs.org/video/2365422384/