Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

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.

The Real Danger Of A Late Side Effect

There are two types of side effects in the world of medicine, short term or immediate, and long term, which is generally without any expiration date.

When it comes to the short term side effects, the one benefit, you know fairly quickly that you are experiencing them.  Nausea, headaches, sleeplessness, etc..  Usually they are not comfortable, nor convenient.  Depending on the severity, other options may be considered to substitute for a different medication.

When it comes to long term side effects, these are generally silent and progressive.  An issue sneaks up on you, often catching you off guard.  It might be something you were warned about could happen, or something else that had been overlooked.

The fact is, listen to any advertisement on the television or read any copy of a prescription medicine in a magazine, and a whole slew of side effects, short and long term will be rattled off.  It is a wonder anyone would want to take anything knowing some of the side effects could cause cancer or death.  Unfortunately for me, a cynic, I feel that these warnings are more of a CYA (cover your ass) than they are a warning to the patient.  You must face the fact, pharm companies are required to list these warnings, not just because, but also because there is a chance, some greater than others, that the side effects will occur.  And the severity or outcome, may have an impact legally.

But did you know, that not all potential side effects get listed?  In a previous post I wrote about my experience with a statin drug for cholesterol following my heart surgery in 2008.  I developed cognitive and anger issues when my medication was switched.  All of my doctors were uncertain about the likelihood, but I was certain.  I know that the only thing different with my body, besides the surgery, was the medication switch.  Doing my own research, I found a Dr. Dorothy Golumb at the University of California in San Diego, who had actually done a study on just my type of issue, cognitive effects and statin drugs.  Her research definitely showed a connection though from a statistical, more importantly to Big Pharm, not a big enough deal to require being included in the warnings.  That’s right, there is a minimum incident percentage for a side effect to be included in warnings in advertisement.  It does not mean that it does not exist.  Quite the contrary, you will find the effects listed in the research of the drug, just not published publicly, as was the case in my situation.

We are in a major health crisis right now, the worst in one hundred years.  Covid19 originally had no testing, has no complete study of what it does and who it affects and how it affects them.  Worse, it has no cure or prevention other than by engineered means (face masks, social distancing).

That means, unless something is discovered, which has already been used before, needs to be found.  But as has been witnessed, existing medications, even though approved for use with one malady, did not make it safe or effective for another, especially when it comes to the body’s physiology, or dosage amount to be effective.

And I want to be clear, I am not an anti-vaxxer.  I do support the vaccines we use for preventing small pox, polio and other maladies.  But there are other vaccines that I do not support, mainly for one reason which I will get into next, the lack of long term studies of side effects.

A cure or prevention at this point, is only, ONLY going to be able to provide information on current or recent side effects.  That is a fact.  Sore arm, headache, fever.  Those will be discovered and recognized fairly quickly.

As a long term cancer survivor, thirty years now, not having the knowledge of long term side effects, researched or just ignorant, is dangerous.  But between the many surgeries, chemotherapy and radiation therapy, the only effects long term I had been warned about, was the likelihood of a secondary cancer, or inflammation of the heart.  Following my blog, you know this was not even close to what I live with.  Most importantly, that dealing with Covid19, with all of my late health issues, I am quite vulnerable to the virus, but also more likely not to survive it because of some of those health issues directly.

The point is, studies were not done on the amounts of radiation given to me, the number of dosages of chemo before heart damage would occur, sterility would occur, damage to my lungs  and spine and muscles, and so on.  But the treatments were approved.  And they worked.  As I look back, my option was simple, trade one fate for another, if not, I would have died.

The worst part of long term survivorship may not even be the side effects.  But as I said, the issues are silent and progressive.  They develop without warning, and severity.  As in my case, you could be moments away from dying of a fatal heart attack because no one was aware or watching for the potential.  Which means that you need to be followed up.  But why would a doctor want to follow you up for something they are unaware of?  Why would insurance companies want to pay for follow up preventative care for past treatments?  Decades ago, the did not.  In fact, only upon the turn of the century did protocols change for cancer patients, to be followed up, for the rest of their lives, with surveillance paying attention to the particular body systems that finally had been researched for potential late side effects.  Is this 100% yet?  Not by any means.  But with the help of social media, word has gotten out, amongst patients and survivors about the needs of long term survivorship care.

Eventually, medicine will discover a cure and a vaccine for Covid19.  Hopefully they will also learn more about how and why it affected people.  But you need to understand, the cure and vaccine will only have short term effects completed.  We must be our own advocate, and push for follow up care until medicine catches up with the long term side effects.  Of course the decision must be made to get the vaccine or not, and just as I wrote recently, the difference of the type of vaccine, active or deactive (live or dead virus) being used, makes a difference for someone immuno-compromised to even consider.  It is likely a live virus vaccine comes out first, which not being able to get that vaccine, will not only still leave me susceptible to the virus, but to anyone receiving the vaccine.

Hydrocholroquine and other medicines, Ultra Violet radiation and other methods are good and proven actions for the things that they were researched for.  But they cannot just be thrown like shit on to a wall, to see what sticks and expect that to lead to a cure or vaccine.  All treatments come with a risk, and it is important to realize, you may not be aware of all of the risks, either because they do not have to tell us, or they may just not know.

Until then, the only thing we can do is what is recommended by the scientists that know because it is simple, the virus cannot spread if it is not given opportunity.  Whether masks, social distancing, hand washing and sanitizing, or a combination of any or all, that is what we need to do.  We are not giving up freedom by protecting ourselves, nor are we professing our politics.  And regardless how you feel about the legitimacy of a real virus, a definite pandemic and how you think it compares to other illnesses and diseases, this virus is real and affecting millions of human lives.

I do my best not to impose on others, but is it really a sacrifice of your freedom if I ask you to wear a mask, in the event, I need to be out, in the event you might be a carrier or actually have the virus?  I do it for you, and I know that I have not been exposed as a fact because of self-isolation for the most part, and precautions taken when I must be out.  As total strangers, there is no way we can know our political leans, but as humans we can at least care about each other.  At least that is how I remember our country used to be.

Not The Reaction I Had Expected

Have you ever had a doctor yell at you?

I have had plenty of doctors give me lectures, and even my primary care doctor of thirty years has expressed frustration with me as her patient when I contradict the advice she feels is best for me.  But I had never had a doctor actually yell or scold me before.  And the strange thing was, it had nothing to do with my physical body, which given all the health issues I deal with, would have at least had some grounds to do so.

No, it was something that I had said to him, that set him off.  By the time he was done with me, I realized that I had deserved it.

In 2008, following my emergency heart surgery, and upon learning that I had many other issues related to the cancer treatments that I received back in 1989 and 1990, I became a patient at the long term survivorship program at Memorial Sloan Kettering Cancer Center.  I saw several different specialists to deal with all the things that had been discovered.

I was seeing the doctor I have been alluding to for a couple of things, issues related to my lungs and my immunity, and more importantly, pain.  I had made several appointments previously with him, and all seemed to go well.  Physical therapy was prescribed, and so were several medications.  The source of the pain was permanent damage.  The whole point of dealing with the pain and muscle issues, was more about management, quality of life.

For most of my fellow survivors, it is hard enough finding help to deal with issues that the common doctor does not understand, because they never learned about long term side effects from chemotherapy and radiation therapy, because, well, cancer survivors were not expected to live that long.  At least that is the way it seemed.

So, if like me, lucky enough to find a doctor that understands, and can help us to understand what we are going through, that is half of the battle.  The first thing the doctor did, was point out everything he knew.  Much of it, did not even require any kind of diagnostic tool like an x-ray.  The damage from my radiation therapy nearly twenty years earlier was obvious from a head that hung forward (I was often accused of walking like I was depressed) and though both of my shoulders had visible signs of muscle loss, the effects on one shoulder were far worse than the other as the resulting unevenness of both shoulders.  He ordered some lung testing including x-rays and pulmonary function testing, which revealed issues as well.  The only thing left for him was “quality of life” issues, pain and sleep.

From the very first appointment with him, just like I had heard from my other doctors, I was simply too hard on my body, physically and emotionally, for as compromised as it was.  My late side effects are progressive in nature, only going to get worse.  Which meant my pain levels, and my inability to sleep, would have to be managed.  And refusing to ease up on my work load, led me to end up on one opiode prescription, then a second, and a third.  Even on three different prescriptions, by the end of my work day, my body was in so much pain, I would add a sleep aid, which also gradually increased until finally on the maximum dose, which should have kept me asleep for twelve hours, only last for two hours.

From a patient standpoint, I was doing everything I could, and my doctors were doing everything for me.  But at a follow up with this doctor about a year later, I responded to a question my doctor had asked me, and his response to my answer involved “lighting my ass on fire”.

“So, how are you today, Paul?”

“Pretty much the same, perhaps maybe a little worse.  I know that I am struggling emotionally right now with all the limitations that are happening with me.  It doesn’t seem either that I am getting any relief from the meds anymore (clearly a concern of addiction and tolerance, after all, I was on four very powerful meds).  I don’t know doc.  Maybe I just need to accept what is happening to me, let it take its course.  I should stop complaining about what is happening.  It was the deal I made voluntarily when I agree to treat my cancer.  Even though we didn’t know this could happen, this is the price I ended up paying for my cure.  I could have just not gotten treated and let it run its course.  But I made this deal.  I deserve the issues I am dealing with.”

“How dare you?  I have never had a patient tell me that they deserve what side effects that they are facing and it is not right for you to be doing it either.”  His lecture went on for quite a while.  I was being scolded, but not in anger.  And it was not his feelings either that he was throwing at me.  He was concerned for me, realizing that I was clearly at a turning point and he needed to get me back on track.

When I say that I am blessed to have the best doctors, I do know that I do.  I continued to see him for several years until he left for another practice.  I recently saw him a few months ago, via a webinar, and he was glad to hear from me.  Even better, as my issues continue to progress, I have been able to improve my quality of life.  Major lifestyle changes have given my body physically and emotionally the breaks that it needed, to the point, I am no longer on those medications that only masked the pain and sleep issues, not resolve them.  I still deal with pain, but pain that no longer keeps me awake, and pain that I no longer allow to get to a point that I cannot take it anymore.

I have never had a doctor yell at me like that, and honestly, I do not ever want that to happen again.

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