Family : Every Patient’s Advocate

What Tim Russert Has Taught Us About Healthcare and a Healthy Life

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Tim RussertLike so many of you, my heart breaks at the loss of Tim Russert. On so many levels, we felt a kinship to him. Anyone who has tried to understand American politics or politicians during the past 20 years has gotten to know Tim Russert, as if he were the trusted friend and neighbor who could help us “get” it.

Our world is now less because we don’t have Tim. And It occurs to me that there are some final lessons we can learn about healthcare from him. Just as he helped us understand politics, he can help us better understand healthcare and a healthy life — as follows:

It turns out that Tim was quite watchful over his heart disease. He had been diagnosed, and was under a doctor’s care. He took his meds, he watched his diet, he exercised, and he got his regular check ups. He was a vigilant patient. Our lesson: being a vigilant patient, doing our best to prevent problems, following all the rules for good health, doesn’t mean life won’t still be too short.

We’ve learned that no matter how many studies exist, no matter what tests can be run, no matter what drugs are available, no matter how well we manage our diets and exercise, there are aspects of a body’s function that just can’t be controlled. Our lesson: Medical science still has a very long way to go.

We’ve learned that good quality medical care doesn’t always translate to a longer healthier life. Yes, I think that over a population of people, better care equals a longer life — BUT — Tim had the best care available in this country, and he died way too young, in his prime. Perhaps without that good care, he would have died even younger? We’ll never know… Our lesson: having good medical care is a plus, but it’s only one tool in determining longevity.

We’ve learned that even the best medical care can’t make up for 1) bad genes or 2) bad choices or 3) extreme stress — any or all. What we don’t know is whether Tim was a smoker when he was younger, or whether he survived on hamburgers and greasy pizza before he turned 55. We don’t know if there was heart disease in his family. We can assume his life was quite stressful. Our lesson: we can’t expect medical miracles to overcome bad genes, heavy stress or bad choices.

Tim taught us that we just never know when our final moment will be — and we need to be prepared. His family was the most important part of his life. He left this world making sure they knew exactly how much he loved them — his dad, his wife and his son. Our lesson: At any moment in life, be sure those you love know just how much you love them. It’s important for your own health, and their health and well-being, too.

Tim had very strong spiritual beliefs, and surrounded himself with spiritual people. In the difficult times, believing in a higher being can be very comforting. His family will find some comfort in the coming years based on that faith, too. Our lesson: Life can be enhanced, health can be supported, and comfort can be found through spiritual beliefs.

Finally, we’ve learned from Tim that one’s legacy is about character and a zestful approach to life. We have to believe that in that instant the heart attack struck, when his life passed before him, he knew it was all good, and he would not have changed one moment of who he was, who he loved, what he had accomplished, and the experiences he had enjoyed. Our lesson: live life to its fullest, with spirit, grace, and zest.

My prayers are with his family — His dad Big Russ, his wife Maureen, his son Luke, and his co-workers at NBC. We were all lucky to have him while we did. And we can all thank him for these final lessons about living a quality — and healthy — life.

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Randy Pausch - a Commencement Address of a Lifetime

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Those of you who follow my blog know that I’m a fan of Randy Pausch, like so many others. I first blogged about him last September, after watching his Lecture of a Lifetime — what he has learned in his too-short years, and the legacy he wants to leave his wife and children. As I said then, I felt his remarks were simply brilliant, and brilliantly simple.

[If you haven't heard of this fine man, you should know that in August 2007, he was given up to six months to live. He is dying of pancreatic cancer, a swift killer with very few who survive it more than a few months once it's diagnosed.]

Then in February I posted an update with a link to his personal blog. It has been one of the most linked-to posts I’ve ever written here.

I learned Randy appeared on Oprah today. That means that people who had not heard of Randy, and his “lecture of a lifetime” before today have certainly heard of him now.

I didn’t see Oprah, but I did decide I needed to check back in with this remarkable man. On his personal blog I found a link to the video of his address to the Carnegie-Mellon Class of 2008. (As an aside, I’m proud to say that my closest friend’s son, named Tim, was a top engineering graduate at Carnegie Tech this year — you go, Tim!)

Just like any of the other appearances of Randy’s I’ve witnessed, his graduation speech was moving; moving to the point that you just wish — just WISH — and hope and pray that his death is a loooong time coming from now. He is so generous with his words of wisdom. He needs more time to share them all.

He made two excellent points for the rest of us:

  • When we are on our deathbeds, it won’t be the things we did that we regret. It will be the things we didn’t do.
  • To live your best life, find your passion — the thing that fuels you from the inside. You won’t find it in things you buy or own. You’ll find it will be grounded in other people.

Since first discovering Dr. Pausch last year, I’ve felt a bit of a kinship. Unless you’ve ever heard that death sentence (you have only six months to live) you can’t really relate to it. But if you have heard it? You discover there is a very strong tie that binds you to that person — and I feel that tie with Randy Pausch.

Take the six minutes to watch his commencement address. It will stay with you, as I hope it will stay with those many graduates of Carnegie Mellon who were lucky enough to have known Dr. Randy Pausch, even if it was only for those few minutes at commencement.

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Update: Carmelo Rodriguez’ Ignored and Missed Diagnosis

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I first told you about Carmelo Rodriguez last January. He joined the Marines in 1997 and during his induction physical, the doctor found a spot of melanoma, recorded it in Rodriguez’ medical record, but never told him about it.

Over the years, that spot grew, became inflamed, and filled with pus. While in Iraq, the military doctor told Carmelo not to worry about it, it was just a wart. In January of this year, Carmelo died from the melanoma.

Compounding the ignored diagnosis was the fact that the Marines discharged Carmelo to go home and die. Then, because he had been discharged, they refused to pay for his military funeral.

Further compounding this enormous insult to his family, and the tragedy of his loss, is the fact that, by law (called the Feres Doctrine), the military doctor who missed Carmelo’s diagnosis cannot be sued.

Carmelo Rodriguez is back in the news today. The congressional representative from the district in which he lived has introduced a new bill to change that inability to sue. Called the Carmelo Rodriguez Military Medical Malpractice and Injustice Act, it allows soldiers, or the families of lost soldiers, to sue the military doctor who harms the soldier or misdiagnoses him or her.

The question here is fairness. It seems quite unfair to me that an ordinary citizen would have the ability to right a wrong through the courts, but a soldier, the very person who fights to retain that right for the rest of us, doesn’t have that same ability.

I’ll be watching what Congress does with this. I expect you will be watching, too.

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Moms With Alzheimers Need Mother’s Day, Too

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My Parents

At least I think they do.

I returned a few days ago from spending a week with my parents in Florida. My mother is in a “Memory Support Center” — a too-hopeful title for a place where people who suffer from Alzheimer’s Disease and other dementias can benefit from assisted living and nursing care, plus daily activities for supporting what memory they still have.

Mom was diagnosed with Alzheimer’s disease about nine years ago. It’s been a very long and sad road, especially for my dad who has been at her side, on and beyond what most caregivers, even spouses, provide. He has been there for her through too much thick and even more thin. My sisters and I have worried that her debilitation would be the death of him.

What do you do for a mom who has Alzheimer’s disease and apparently has no memory of even her children?

You do the same as you would do if she remembered every moment of your lives together. Because honoring her and loving her doesn’t change, just because she doesn’t seem to get it. So my sisters and I sent flowers. And when I visited last week, I gave Mom a teddy bear with angel wings and a halo.

And then you do what you need to do to support prevention or cure for this “long good-bye,” so others won’t suffer the same way. To honor Mom, my sisters and I donate to the Alzheimer’s Association, and we walk in the annual fundraising walk each year. We’re doing what we can do.

I hope your family is never touched by this horrible disease. If it is, you may be interested in some of the material found on this blog. If you’d like to share more information about your experience with it, feel free to leave comments in the Alzheimer’s section.

And if you don’t deal with it — count your lucky stars.

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