Paul's Heart

Life As A Dad, And A Survivor

Seeing Is Believing

Medical records.  The most important thing about you, that you should always have at your disposal.  I am not talking about your annual check-ups or flu shots necessarily, but then again, always a good thing to keep up to date on your health.  I am talking about when you face an important challenge to your health.

Up until recently, it was difficult and at times very expensive, in spite of it being your right, to obtain a copy of a hospital visit without jumping through all kinds of hoops, and signing a form to finance the expense of obtaining the pages of your file (yes, I know, that is an exaggeration but at $.25 a page for something that is rightfully mine?).  Today, many hospitals across the country are now using a computer program to do what we had to do physically when seeing another doctor, sharing our records.

This new technology has helped to share our information between medical providers, but it also has given us, the patients easier, and less expensive access to our records.  Sure, you will not get the actual play by play, but you will at least get the summaries of your status and most results.

But how important is this?

When I had my open heart surgery in 2008, and it was discovered that it was attributed to the late developing side effects from my cancer treatments eighteen years earlier, I enrolled in a “survivorship clinic” at Memorial Sloan Kettering Cancer Center.  There were only a few of these clinics in the country at that time, where as now much more available at most major cancer centers.

One of the first things that I was asked to submit, was my cancer files for my Hodgkin’s Lymphoma.  Not thinking anything of it, I reached out to the hospital that treated me with radiation therapy, and my oncologist office that treated me with chemotherapy.  I ran into a problem.  I was able to locate my radiation therapy records, most likely due to the fact there are regulations pertaining to radiation exposure and keeping records.  But it turns out, my records with my oncologist, who I was no longer seeing, were destroyed.  Or as the office receptionist put it, “were burned in a fire.”  My initial thoughts were empathy thinking that their office had experienced a tragic loss from fire, then I realized she probably meant that they purged records of older patients by incinerating them, believing that there would never be a need for them.  And the fact that I was now asking for those records, she did not want to risk legal action by admitting they had intentionally destroyed my records.

So with only half of the information, my doctor took that data, and combined with his own research, using a very resourceful system of the Childrens Oncology Group, who had established a standardized guideline of follow up care, as well as exposures and risks, and was able to estimate, what dosages I received and of what.

From there, it was just a matter of running all of the tests necessary to figure out what I was likely dealing with.  The picture above just mentioned preliminary estimations of what was already known.  There are now an additional two pages that go with that page.

I learned back in 2008, I needed to maintain my own records.  Sure, all the doctors had their own records, and normally, access to them was not an issue, but at times, time consuming.  Of course today, computer systems now provide multiple levels of access to health records.  But it will still not eliminate the need for any patient, cancer or not, to keep track of their own records.

You do not know if you will have to deal with a provider who is lazy or have an issue with their ego, and pay any attention to your history, that they want to do everything themselves.  I have run into those situations in the past.

I have a simple system currently, though could be condensed, and I am working on it.  I have a back pack, very cumbersome, that has all of my records since 2008.  I wear a med alert bracelet that has simple directions on it, to look in my wallet for small laminated cards, that has each and every diagnosis I deal with, as well as the doctors to contact for assistance with my care.

And because one of my most serious issue, is not having a spleen, it is important that if I happen to have a first responder or nurse that does not understand what it means when they deal with me, these cards explain what to do.  Of course, I still rely on them following these directions.

As I have gotten older, and also divorced, my children, who will be of adult age, will likely be the ones responsible for my care if the needs ever arise.  I have reduced my back pack down to three of the binders you see pictured, in the event of an emergency and no computer access, as well as a thumb drive.  But these records keep track and assist as all of the late side effect issues that I have as they progress.

Like I said, you do not need to keep track of all your records such as visits for colds and flus.  But anything that was important, not just cancer, but vaccine records, biopsies, broken bones, any studies that you have done, it is in your best interest to make sure, if you have not done so already, make sure that you have your hands on your own records as well.  And if you do not have access to them anymore because they may have been destroyed, research and do your best to recreate them.  Some records are better than none.

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