Paul's Heart

Life As A Dad, And A Survivor

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.

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2 thoughts on “The Real Danger Of A Late Side Effect

  1. Excellent, Paul. Can I put on my Facebook? Last year, I found out a young man in CO was diagnosed with Hodgkin’s Lymphoma that I had met at Jeff’s nephew’s wedding. He was a groomsman. I told Tyler to tell him to contact me. He PMed me and asked if he needed to know anything. He is close to the age I was when I got Hodgkin’s—25. I told him to ask questions of his medical team. I told him it was his body, so he needed to make sure he understood the side effects and the long-term side effects, especially how much radiation he would receive. I did not ask questions back in 1976, which I regret. He thanked me for telling him, and he did ask. He is doing well.

    • Lynn, first, thank you as always for the compliment. Second, and most importantly, of course you can share this information. That is what “Paul’s Heart” is all about, getting information out that we, as patients, all too often were never warned about, because those that treated us, were not even aware. But as you know, one by one, we are making a difference to other survivors.

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