Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “August, 2016”

Life Saving Bling


I suffered a wrist injury at work in 2003.  From that point on, I never wore anything on my wrists.  In fact, I cannot tell you the last time I ever saw a watch.  But as you can tell from the picture, I do wear something on my wrist today.  In fact, I have done so since 2008, when I had my life saving emergency open heart surgery.  And you can tell that it looks quite worn as it is over eight years old now.  And like the wear on the med alert bracelet, the irony is that it does not reflect the wear and tear on my body that late effects from treatments of radiation and chemotherapy have done.  I will get back to that bracelet in just a moment.

Once it was discovered that I was suffering late developing side effects from extremely harsh and toxic treatments for cancer decades ago, I had the daunting task of finding someone who could not only diagnose the issues, treat the issues, but also help me manage those issues, for the rest of my life.

I found such a doctor at Memorial Sloan Kettering Cancer Center in Manhattan.  Dr. O had not only studied Hodgkin’s Lymphoma for more than three decades, he had also been studying the late effects from the toxicity of chemotherapy and the never-ending destruction caused by high levels of radiation (in my case, 4 times the lifetime maximum of exposure).  Though it is not a joke, the inside comments made by patients like me, “radiation… the gift that keeps on giving.”  This was also what caused the need for my heart surgery.

Anyway, you can find out about the heart surgery by going to the page, “CABG – Not Just A Green Leafy Vegetable.”

The first thing that I had to do as a patient, was gather all of my health records from my oncology team.  This proved to be a daunting task as I was more than 18 years out from treatment.  My chemo records were incinerated.  Probably only due to regulations by the NRC, I was able to recover my radiation records which is the only reason I know my exposure levels.  They also had copies of my surgical records.

Through medical history of treatment back in the late eighties, my general health records as well as knowing the drugs used in my chemo cocktail, all Dr. O could do, was estimate what dosages of chemo I was given.  The paperwork that I now had in my possession was enough to fill an entire school backpack.  And that backpack travelled with me all the way to New York City.  In fact, that backpack travels everywhere with me, because any kind of emergency medical care I may need, my backpack provides crucial information that will be critical to me surviving any kind of trauma or illness.  Because of having Lymphoma, and being asplenic (having no spleen) courtesy of my diagnostic procedures, I cannot be treated as a normal healthy human being.  I have a higher risk of infection, bleeding out, and more dangers.

As you can tell, it is not really practical carrying this backpack around with me everywhere.  Technology in doctor offices across the country now make it possible for doctors anywhere to see your records, no matter where you are.  But just because they are available does not mean that the doctors will use it.  As a long term cancer survivor, I have learned that I have to advocate for myself.  That means not settling for a doctor blowing me off, because the “symptoms just don’t make sense for someone my age.”

In the event of an emergency, before I even get to an emergency room, I have had to deal with paramedics.  Any paramedic caring for me, needs to know immediately what kind of patient they are dealing with.  Which is why, not just me, but patients with special needs wear these med alert bracelets.

In my case however, my bracelet does not list just one disease.  With more than a dozen different health issues that I deal with, there simply is no room on the bracelet.  So I had to adapt.  I had to use what little space I had available to give as much information.  On the front side of the bracelet, lists my name, that I am a Hodgkin’s Survivor from 1988 as well as a 2x CABG Survivor from 2008.  Immediately under that it says, “see reverse side”.

The first line instructs whoever is reading the bracelet, to immediately pull my wallet out, and locate two miniaturized cards that have all my medical diagnosis on them, and how to treat me prophylactically to prevent infection.  The next line instructs them to call my primary care doctor and her phone number, and my specialist at MSKCC and his phone number.  Any medical personnel following these instructions, increase my chances of survival.

Though I have  yet been able to do so, there are many other survivors who have been able to “save” their medical records on a “zip drive” or CD to give the information to any doctor treating them.  But the other night, while visiting with a friend, I noticed he had a different kind of med alert bracelet on his wrist.

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It took both the alert, and the information, and put them into one item.  Most paramedics now use laptops and by simply plugging in the bracelet (important if a patient is unconscious and cannot alert the paramedic that they have important medical information on a USB drive).  And these are not expensive either.

For my long term cancer survivor friends, for cancer patients going through treatment right now, in fact, anyone dealing with a serious illness or condition, my blog has always been about information, and hope.  I hope you take this introduction of new technology, and take care of yourself.  Having your health history literally at your fingertips, can make all the difference in saving your life.

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