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Archive for June, 2008

Misdiagnosis, a Visit to the Lab and One Last Point

For those of you who have read my misdiagnosis story, you know that one of the ultimate heroes was the pathologist (I’ll call him Dr. H.) who helped me understand how the misdiagnosis happened.  Even though he was one of the doctors responsible for getting it wrong, in the end, he didn’t turn away or try to avoid me.  Instead, he explained to me how the mistake was made.  He even apologized.  There was some relief in that, even though it didn’t change the outcome.

Fast forward four years.  Last week I was invited to visit Dr. H’s lab, the lab where my specimen was mis-read, the one where my misdiagnosis really took root.  It’s a hematopathology lab, meaning specimens like lymphomas, tumors, abnormal growths.  What Dr. H wanted me to know was that procedures and policies have been changed.  In his words, had I not brought the inherent problem-causing procedures to their attention, had I not held their toes to the fire, they’d still be doing things the old way.

And people might still be getting misdiagnosed.

For this woman who has fought on behalf of patients for four years…. that was a melt-down point.  All good.  Dr. H. showed me how the processes have changed.  It’s a way of handling paperwork and the eventual reports that are issued.  It turns out my misdiagnosis was more about piecemeal reporting, and less about bad science.

The tour lasted about an hour.  I saw all kinds of specimens under microscopes, printed reports, color-laced spots on a computer monitor (all well protected so I saw no names — good privacy) — and when we were finished, and I did understand how the original mistake had happened, and what was being done for today’s patients to prevent it from happening again….  I asked only one thing.  This, from my follow up email to Dr. H – and I’m quoting:

I recognize that there will always be a certain number of mistakes that will happen in the reading / conclusions drawn from samples / specimens.  I’ll never forget your words to me those four years ago – that you were taught in medical school that there will be mistakes, but if you have to err on one side or the other, you would want to err on the side of getting someone treatment they didn’t need, as opposed to missing a diagnosis that would require treatment.  I understood it even then.  It makes sense.  And I agree that it’s probably best for the majority of patients.

But when I look at those 10,000+ numbers of specimens being reviewed each year, I have to think there is some of the human aspect being lost.  As you will remember, I did ask the one woman in the lab where we reviewed the lined up chromosome reports, about aligning the work you do with the people who are represented by all those samples.  I do understand the responses you both gave me about objectivity, but I still feel it’s important to make this emphasis:  I don’t think it takes away from objectivity to remind yourselves on occasion (as an entire group of lab professionals) that each report is followed by emotion of real human beings who are receiving answers about their lives.  Each one of those samples represent life, death, debilitation, illness – short term or long term.  If the three most important things in life are love, health and the finances needed to support them, then your results have an impact – positive or negative — on all three.  The reaction upon hearing whatever the news is – good, bad or still unknown — is always emotional in nature.  Total joy, crippling sadness and upset, worry, fear, whatever it is – it’s human.

I’m not suggesting you need to know individual names, faces and personalities to align with samples and test results.  I’m just suggesting that they be regarded for what they are – the determination of what the rest of someone’s life is going to be.  Making that connection would, hopefully, compel the people who are figuring out the answers, the people who work in your labs, want to get it right even more often than they do.  How well do they understand that they hold someone’s life in their hands when they arrive at their answers? Could such an emphasis improve the quality and success rates of your results? I realize not every specimen is a life or death situation.  I imagine some are as simple as strep throat or some other fairly ordinary malady.  Even still, to the person who may not be able to afford the medicine needed to get rid of that strep throat, even that could be a big deal.

There was more, of course…. but that’s the gist.

Bottom line — I am highly appreciative of this opportunity to visit Dr. H’s lab, to observe how their work is done, and most of all to be so gratified that the procedures have been changed and fewer people will be misdiagnosed.

It was a pivotal moment in my career and my life.

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

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

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.

Find an update to this post:  A July Update on Randy Pausch

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The Blue Beast, and Your Chance to Make a Difference

I spent a few hours yesterday with a delightful team of people who YOU should get to know, too.The Blue Beast (Cover America Tour)

Meg, Pauline and Blake are traversing the country this summer in a big blue bus (they call it the blue beast!) in the Cover America Tour. Sponsored by Consumers Union (the Consumer Reports folks) it is intended to help you tell your story of whatever run-ins you’ve had with the American healthcare system through videos that will be shared with others.

The goal? To make the case that the system is broken, needs fixing, and to get some real dialog going on how to do that. We’re past the lip service part. We need action!

So here’s how it works, and how you can participate:

If you have a story to tell that highlights the breakdowns in the system — a medical error, a misdiagnosis, an inability to afford your care, an insurance nightmare, or whatever it might be…. link to the map of the Cover America Tour and see if they will be anywhere near you. Meg tells me the map will be updated every couple of weeks as they continue making their plans. Their plans change every day as they hear from new people who want to be interviewed — and if you have a good story that should be included, they’ll stop in your town to meet you.

Pauline, Blake and MegHere’s how to let them know who you are, and why you want to participate: Share Your Story

The tour runs from now through mid-September, so keep an eye. I will update my email list every couple of weeks on upcoming locations. If you would like to be included, then sign up to receive notices. (If you are already on my list, you don’t need to sign up again.)

And if you are contacted? how about coming back here to let us know — we’ll link to your story online.

Safe travels and godspeed to Meg, Pauline and Blake. It’s a wonderful thing they are doing — committing months of their lives, away from their loved ones, to help us all.

SPTCL Rears Its Ugly Head Again!

Almost had a melt-down again last night…. but by the time the evening was over, it was almost a joyful experience!

I received a note from a young woman named Heather, as follows:

I would like to talk with you. I was diagnosed with SPTCL yesterday. I read your story and I feel exactly the same. Like your story, I am not showing signs of being sick. My white blood-cell count is normal at this point. I have no lesions on my body. I feel extremely healthy. I can not believe that I have to do Chemotherapy. I am not presenting any of the “normal” symptoms that this disease comes with. It just doesn’t feel right. I would like to talk to you about your experience as I am getting ready to go through the same thing.

I almost fell off my chair. I still get chills when I read Heather’s note!

I immediately sent her my phone number — and last night we talked for about a half hour. By the end of the conversation I was shaken to the core. As I explained to my husband, I felt like I was talking to myself — the same conversation I might have had with someone else who had walked in my shoes in 2004. It was scary, and euphoric all at the same time.

Why? Because both Heather and I think there is a good chance she, too, has been misdiagnosed with subcutaneous panniculitis-like T-cell lymphoma.

She did have a biopsy, like I did. She was told by her primary care doctor that “a team of pathologists” had reviewed the biopsy, and SPTCL was their conclusion. But she has no other symptoms (nor did I) and all the “classic” lymphoma symptoms are missing: chills, night sweats, hot flashes. Her blood tests are clear, as were mine. She does have other lumps, as I did.

I’ll keep you posted on what we learn about Heather’s situation. I’ve provided a few suggestions for cutting to the chase, getting her to Dr. Jaffe at the NIH, and hopefully proving that she, too, has been misdiagnosed.

But here’s how I feel today: euphoric!  Because if I never help another patient for the rest of my life, helping Heather through this difficult time will have been worth my efforts.

Wish us luck!
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Find a follow up to this post here.
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Updates and SPTCL resources will be found on the new SPTCL page — link here.

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