The first thing I did when I was discharged from the hospital following my heart bypass surgery was purchase a $32 bracelet. I am not one for jewelry other than the cross I wear around my neck along with a Chinese pendant that symbolizes the father/daughter relationship. But this bracelet was not going to be about fashion. It was going to be about saving my life.
From the moment it was discovered that my body had been badly damaged by side effects from cancer treatments over fifteen years earlier, I was thankful that I was treated in a fairly big hospital. Or was it just dumb luck? Long term cancer survivors are only currently getting the attention medically that they so desperately need. The problem goes beyond learning what happens beyond five years when a person is exposed to four times the lifetime maximum of ionized radiation, or having had chemicals injected into veins that destroy the heart and lungs over time, or even a drug that would be used in wars to kill people.
Several things I did know, my doctors had no idea what they had run into when they went to do a simple catheterization and stint. They also were not aware of protocol to deal with patients like me, and millions of others because up until then, and only slightly more today, not many doctors know about late effects that cancer patients develop. I actually opted for this hospital because it is local to my family physician. It is an hour away from home and I pass at least three hospitals that I would never had any chance at surviving the surgery as one has a history of not being very clean, another I have just heard too many misdiagnosed stories, and the third… well… just “no.”
Once I discovered that health issues with my body were no longer going to be standard, I recalled a resource that I had available, meant for cancer survivors who were dealing with “unexplainable” symptoms because the symptoms just did not make sense. With that, I found several long term survivor clinics, who happened to be at very large cancer facilities like Stanford, MD Anderson, University of Pennsylvania, and the hospital I chose… Memorial Sloan Kettering Cancer Center in New York City.
Getting back to the bracelet, as a patient with MSKCC’s survivorship program, I got full surveillance and had a full history taken, with records retrieved to the best of my ability. After all, it had been a long time before that, that I had been treated. My chemo records had been destroyed, only my radiation records remained. But in dealing with a large cancer facility, a research facility, the latest technology, advances, and treatments would be available. And in my case, it would still be several years until everything would be fully known as far as what had been affected, or at higher risk to develop any further issues.
With the guidance of my team at MSKCC, several suggestions were made to make sure that I got the correct attention given my unique health circumstances. But step one began with getting that bracelet. Unfortunately, I have too many issues to list on that little half inch wide by inch and a half long metal tag. So, on the front is engraved, my name, Hodgkin’s survivor, CABG (heart bypass), chemo and radiation damage, asplenic, and the words “see other side”. Once you get to that side, I list my family doctor and the main doctor that I see at MSKCC (along with their phone numbers) and the order to call them “stat”. The last line says, “see wallet for more information”.
Inside my wallet I have two laminated cards with even more detailed information. One card actually lists many of the issues that had been discovered (not all of them because the card needs to be updated with new diagnosis) so it lets whoever is treating me that it is best to do as my bracelet says. The second card is probably the most important of the two. My bracelet mentions “asplenic” which means that I had my spleen removed at some point. Actually it was during my diagnostic stages for my Hodgkin’s. But many of us over the age of 35 know that back in the decades before the 90’s, it was common for spleens to be removed, at the time unaware how crucial spleens would be in fighting infections and treating heart disease.
My hope is that when a tech sees that I am asplenic, they pass the word on and know that I am at a high risk of infection, or I might just be at the hospital for that very reason and to follow the directions that are on the other side of that card… run immediate blood cultures, and begin top level antibiotics through IV as if I were being treated for the worst possible infection if I had a fever over 101.5. Otherwise, antibiotics should be used preventatively for any other procedures, including dental work beyond the normal cleaning and fillings.
My bracelet was used three times within a one year period last year. And unfortunately the first test my bracelet got, I was transported by ambulance, unconscious, to the worst possibly of choices for hospitals, the one with all the cleanliness complaints against it. I was eventually diagnosed with aspiration pneumonia, but the worst of it was that I was septic. I was perhaps hours away from advancing to septic shock, which with my health would not have ended well. But to their credit, they saw my bracelet, and followed the directions to the letter. While they did lead me to recovery, their discharge instructions lacked the needs for my survivorship standards and my family physician promptly kept me at rest another two weeks until fully recovered. The other two incidents, emergency personnel used the exact same procedure, and fortunately I am here typing this post.
But what happens to the other cancer survivors who do not have the opportunities that I have had, and many other have? What happens to the cancer survivors just out of treatment who have not had their first follow up to even see if side effects have begun to develop? Then again, what if you just happen to have something unusual, but you have doctors who just provide standard care (and no, I am not beginning the anti standardized testing in schools argument – that will be another post). The television show House, no longer on television, starred a doctor at a prominent hospital who was only assigned “special” cases. Of course it took him the entire episode, and most of his cases were all cured. In the real world, this is more the exception than the rule unfortunately.
The good thing is that now, smaller hospitals are connecting and merging with the larger networked hospitals, and now have access to the current information as it is shared. Also, patients are now followed right from day one following the completion of their treatments for whether side effects develop short term or long term. But a good suggestion for anyone, not just cancer patients, but anyone who has had any medical condition out of the norm, heart attack, stroke, diabetes, ALS, epilepsy… anything that could let the emergency technicians know that they have a patient with special needs, might just make a difference. And for $32, a bracelet for your life is more than worth the better care you will need.