Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Inspired By…”

They Just Don’t Get It


I am just so frustrated right now.  They just do not get it.

From the moment we are diagnosed with cancer, we not only want to get done with it, we want to be able to get over it, and get beyond it.  We look forward to the day that we hear about the magical “5 year mark”, that unofficially makes us “cured”, or at least in society’s eyes, less likely to hold our cancer experience against us… A.K.A DISCRIMINATION!!!

Many years ago, it was discovered, that many cancer survivors, particularly with Hodgkin’s Lymphoma, because of the extreme levels of radiation, and the highly toxic chemotherapies used up to the turn of the century, were developing issues because of the treatments that saved their lives.  In the late 1990’s, protocols soon became established to begin following up cancer patients “for life”, not just for the possible return of their cancer, but to make sure any late developing side effects that would develop, would be managed at an earlier stage, than allowed to proceed to the level of a “widowmaker” like I experienced, or worse.

Here we are, two decades into the new millenium, so much more experience and knowledge, and yes, many doctors and caregivers now recognizing the need for follow up care for life, and still, I am seeing posts like this:

“I’ve been told that I no longer need to do my yearly check ups, as a matter of fact, the doctor says I don’t need check ups for my HL at all anymore. ”

While I am extremely happy for this young nearly 20 year survivor of Hodgkin’s Lymphoma, I am dumbfounded, as she explains that she does have some late effect issues, her doctor does not seem to be concerned, presenting her with the opinion that he is washing his hands of her, convincing her of his obvious release of any problems.

She had been treated during a transitional time when radiation therapy amounts were being reduced and more targeted, and the toxic cocktail of chemotherapy had also been modified, but still contained two of the most brutal ingredients in that treatment regimen.  One of those drugs that was personally responsible for the demise for the death of a 24 year old friend of mine five years ago, surviving his Hodgkin’s, only to die from the noted rare effect of the drug, simply because the doctor did not follow the follow-up protocol that was available.

http://www.survivorshipguidelines.org/

THE INFORMATION IS RIGHT HERE!!!  WHAT THE HELL IS IT GOING TO TAKE FOR MEDICINE TO WAKE UP AND REALIZED THEY NEED TO DO MORE THAN JUST CURE US OF ONE DISEASE TO LET US DIE OF SOMETHING ELSE?!?

I am just a normal human being, no doctorate degree in medicine.  But I did my research.  I share the information just like the hundreds of other long term survivors I know of, that tell of the many issues we face, and yes, why we face them.  Together, we all try to inform and educate doctors and nurses, for many, our primary care givers who were never taught the issues we have to deal with, yet rely on them for the diagnosis and treatments.

The Children’s Oncology Group website is the most accurate guideline for treatment and follow-ups for many cancers and their treatments.  It has been created by the experts.  It is about time that doctors understand, we do not have a choice once we have had cancer.  We may be done with the immediate, but it is the future that we need to manage.

I am quite happy for the young woman who shared her post, and have encouraged her to refer to the above website, and to immediately seek out a survivorship clinic, which clearly is more equipped to deal with issues she already has, rather than just be released.

Not Kids Anymore


Happy Halloween everyone.  It seems like all my friends are recognizing today not as the sweet and tasty, fun holiday that we once grew up with, but instead, remembering how this day changed for us many years ago.  And just like my friends, my daughters are now “too old” to dress up and go knocking door to door, offering tricks if treats are not bestowed.

But it is not just Halloween that has changed for us.  My daughters are in the later stage of their childhood, which means it is now time to talk about other things besides Dora The Explorer or going to the beach.  My daughters know the trove of memories I have to always cherish their childhood.

No, today, our conversations are geared more toward the adulthood, rapidly approaching.  From their interests, continuing education, where to live, the questions are coming out, “Dad, how did you decide…?”

The cool thing is that both kind of have an idea of what they want to do.  Like all children, their minds have changed frequently.  But now they select courses in school, which pertain to their interests.  They realize that a part of deciding what they want to do, is where, and will it be something they can do for the rest of their lives.

Two years ago, my oldest actually hit me with this question out of the blue, “Dad, is $55,000 a good salary?”  And just recently, my youngest asked a similar question, “Dad, how do you decide where to live and how much money is enough to make?”

Yep, I am done reading bed time stories, singing lullabies.  It is time to get serious because the things they learn now will impact them the rest of their lives.  More than half-way through my life, I have a pretty good grasp on what should be really important in life, and how to have the best opportunity to be happy.  A lot of mistakes were made along the way, but I feel I have the right words for my daughters.

“Whatever you do, do not plan your future on how much money you will make.  Money is not everything.  And it is true, money does not buy happiness.  Being irresponsible with money decisions can actually be devastating if you are not responsible with your decisions.  Learn that there is a difference between “need” and “want.”  Take care of the things you need first.  But before you can earn any income, you need to find the career that you will not only be happy with, but passionate about.  Because that is where you will truly enjoy your life, doing what you enjoy doing.  If you go to work everyday, doing something you had not intended on doing in your life, it is going to be a chore.  But find something to do, that you are not only good at, but enjoy, and every day you will be happy to go to work.  In fact, it seems almost hard to call it work when you enjoy it so much.”

My younger daughters showed me a tool that is available to kids today, through the federal government, that actually shows career prospects for the future, and geographically where specific jobs will be the most in demand.  Of course, back in the 1980’s, I never had this resource.  I explained to both of my daughters, use this tool to decide where you will eventually choose to live, based on what you will want to do with your life.  And then, depending on where you choose to live, the cost of living will determine their necessary salary.

But I stressed to both, it is important to not be “married” to their job.  Simply put, live within your means.  Do not put yourself in a position, where your employer knows you have no choices available.  It is this pressure, such as buying a house that you cannot afford, spending frivolously that can turn a job you enjoy doing, into a ball and chain, making you dread each walking day.

From there, the conversation continues about money and how to handle it.  It is important that they do not make the mistakes that I made.  As they are both quick to point out, “the whole reason of studying history is not to repeat it.  So they are learning that while credit is a necessary evil, I am trying to get it across to them, to only use credit what they have cash to pay off right away.  That credit is not to be used, with the exception of a car or house, to purchase things just because you want them and do not have the cash to pay for them.  This mentality leads to disaster, and often, repeated.

I can tell that they understand.  I wanted to have our financial issues straightened out before they grew older, but this was a constant struggle.  My hopes are that they learn from my examples and remember the things that I have told them, so that they can do better with their financial future.

Boy I sure do miss those chilly Trick-or-treat nights.  They sure were much more fun than all this serious talk.

Happy Halloween everyone.

Not Being Discussed About Health Care


There is no argument.  Health care in the United States is messed up.  The system set up to take care of us, makes us the only country in the world to profit off of its sick and dying.  Health care in the United States is for the benefit of those only who can afford it.  I have railed against both the insurance companies and big Pharm for their corporate greed.  It goes without saying, I am an advocate for universal health care, as a right, not as a privilege.  And I understand that we are no longer a country that cares about its fellow man or woman, and that if circumstances beyond a person’s control have left them unable to obtain insurance, well then, too bad for that person, some do not want to pay for them, even if it means paying less themselves.  Some people will not help another.  They just do not care.

I have written many posts about this.  But today’s post is not about the greed that is leading to American citizens, adult and children to lose their lives, because they could not afford their care.  It is about a care that has not gotten better.

In the first half of my life, the joke used to be that my doctor would only see me for a seasonal allergy shot.  In 1988 I was diagnosed with Hodgkin’s Lymphoma, that all changed.  In 2008, my health went kablooey when late developing side effects finally got bad enough requiring attention.  I have been dealing with these situations for over eleven years now.

The one consistent through this entire time, over 30 years?  I have had the same primary care doctor.  I still do.  It is a little more difficult to pull off as we are geographically separated over 1000 miles, but when the opportunity comes up, it is her that I go to see.  Why?  Because over that time, I have a doctor who knows me inside and out, how I make my decisions, how to help me make my decisions.  More importantly, because she is that good, that knowledgeable, that experienced.  If something else were to go wrong with me, I trust her 100% to make the right decisions given my unique health situation.

For years, I have been encouraged that I “need” to find someone locally, especially having cardiac issues.  There is no way for me to get help a thousand miles away if I should ever be in the middle of a heart attack.  And I agree.  Here is the problem.  I am 0 for 6 in finding any, and that is without dealing with an emergency.  This is just for a simple physical.  And I have my reasons, very good reasons.  One barely had any time to hear anything about me.  Another challenged my knowledge about my health and the preventative methods I go through, to maintain my health.  The worst offender, told me I had to forget dealing with anyone else I had seen, I would only deal with his people.  I was supposed to forget all of those who took care of me for the last eleven years.  I have no words to describe how I felt as I walked out of that appointment.  Florida does not offer the greatest health care even for the healthy people, let alone someone with unique complications.

But a time did come unfortunately, that I would face a situation that I would be forced to deal with the local medical community here.

Chest pain.  I have had it before.  Usually just an episode that lasts thirty seconds and would go away.  I have had this happen many times, last time actually being checked about it, back in 2012.  Emergency room diagnosis, was “something did occur, not sure what,” and I left.  But this time, the pain did not go away.  And while I did not have any other symptoms of having a heart attack, having a history of two heart surgeries, and having other cardiac issues, I made the decision to go to the hospital last month.  Spoiler alert, I am sitting here typing this, it was not a heart attack.

This post is about what happened during those thirty-six hours while I was in their care, or lack of.  While I do rail against the greed of the insurance companies and Big Pharm, the actual care needs improving just as much.

Upon arrival, I was “triaged”.  This is the technical term for an interview and vital sign check before taking you back to the emergency room.  It is during this time, an “identification bracelet” is placed on you.  I bolded that and italicized it.  Why?  Because the entire time that I was in the ER, that bracelet was never looked at once.  Sure, verbally my identity was confirmed, but that bracelet is supposed to be checked.  Now you may be saying, “Paul, what the hell is the big deal?  You know who you are.  You answered the person.”  One of the first things ordered for me, was a chest x-ray.

As a tech rolled through the ER with the portable x-ray machine, he stopped at the bay next to mine, and said, “OK Mr. Edelman, I am here for your chest x-ray.”  The patient while awake, just sat there while the tech began to position the patient.  At this point I called out, “I am over here.  I am Paul Edelman.”  The tech rolled the unit over to my bay, positioned me, snapped the x-ray, and left, WITHOUT VERIFYING MY ID BRACELET!!!!

WTF!!!  Just moments later I would learn that the individual in the bed next to me, was dying.  Can you imagine me getting a copy of his x-ray with my name on it?  OMG!!!  I had blood work done.  They never checked my ID.

A patch with nitroglycerin was put on my right shoulder, and I traded the pain in my chest, for a decent sized headache.  That is the trade off for opening ALL blood vessels.  Preliminary testing revealed that I was not having a heart attack, but definitely something was happening.  At that time, I gave all the information and history, on me.  I told them how to get all of the records that were necessary to keep me alive, and to keep them from making mistakes.

I would be kept overnight for observation, and scheduled for cardiac testing the next morning, a nuclear stress test, and an echocardiogram.  I have had several of these before, so it was no big deal.  As I was completing the stress test, I could see the EKG strip, which I did not see anything abnormal for me.  And when I was finished with the test, had the final x-ray taken for that test, and went back to my room, to way for the echocardiogram.  There is just no excuse for what happened next.

A resident came into my room, and had revealed to me, that I had an “abnormal” stress test, and I would be heading downstairs for a catheterization.  You see, when you have an abnormal stress test, it is pretty certain you have a blockage somewhere, and it needs medical intervention.  There was only one problem.  I had just had one of these caths, six months earlier.  And my issue was corrected.  There was no way I was letting them go near me at this point.

Me:  Um… okay.  Here is what I am going to do.  You will not be doing a catheterization on me.  You are going to discharge me and I am going to go right to the airport, and fly to the doctors that know what to do with my unique health conditions.

Dr.:  I’m sorry, you do not understand.  You cannot fly.  You need this taken care of.

Me:  I do understand.  You do not understand.  I am not letting you or anyone here do anything.

The doctor left, and then I was rolled down for my echocardiogram.  Great.  That was going to be a fun test now that I was all stressed out.

After the test was done, I was taken back to my room.  A nurse came into my room with a huge smile on her face.

Nurse:  Ok Mr. Edelman.  You got your wish.  You’re going home.  Everything is perfect!

Huh?

Me:  I’m sorry, what?  What do you mean everything is perfect?

Nurse:  Your stress test is normal.  You can go home.

Me:  That is not what  the doctor just told me an hour ago.  I want to see my cardiologist… NOW!

For a moment, I was thinking that I was that much of a pain-in-the-ass patient, and they were simply being accommodating and getting me out of their hair, which of course is the wrong thing to do regardless.  But then my doctor came in.

Me:  Doc.  What the hell is going on?!?

Doctor:  Well, the good news is your stress test is normal.

Me:  That’s not what the other doctor said.

Doctor:  Um, yeah.  It turns out that she had not read the whole report.  She had not seen the x-ray pictures that were normal.  Your EKG was abnormal, but the pictures confirmed everything was okay.

Me:  My EKG was abnormal?  She did not wait for the pictures?!?  What the fuck man!!!!  I know my EKG is abnormal.  T-wave inversions.  Right?!?  Even I know that I have them.  And if you had verified my medical records I gave you, EVERYONE would have seen that issue.  But when you tell me I have an abnormal stress test, I know what the fuck that means.  I have been operated on twice because of that.  What the hell is wrong with her?!?  Who does this shit?  She was going to have my cathed again?  Unnecessarily?  Exposing me to risks that this hospital is not prepared for, and clearly not skilled?

I left the hospital about two hours later.  I obtained my health records of the visit.  I want to say I was shocked, but I was not.  Under each test that was done, was the following phrase:

“no prior records to compare to”

It did not matter that I told them about my health history, or how to get my records of everything that was done to me.  Shit, I even had access to the same records through my phone.  They did not even consider them, or my concerns.  And this is why I do not have local care.  This is a major issue with our health care.

Though all agree something happened that brought me into the ER, nothing was determined or diagnosed.  Just “return to hospital should the symptoms appear again.”  Sounds like a plan, but I am going to need some extra time to get to the doctors that I know will save my life.

One final note, do not think I am ungrateful for it not being something serious.  I am very grateful.  But I am scared shitless and the quality of care, or lack of, that I am depending on to keep me alive.

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