Paul's Heart

Make Your Inner Voice Your Outer Voice

One thing that I know I definitely got from my mother was my ability to speak out.  Mix in the experience of being bullied the majority of my scholastic years.  Then factor in the years of experience and exposure in the second half of my life in the medical world.

I will not deny that I am more outspoken than most people I know.  That can be a good trait or a bad one.  It can rally people together around me or those that need it, or it can isolate me and cause abandonment issues, actual ends of friendships.  While I am often congratulated for the stances that I make, when all is said and done, when the dust is settled, I often find myself standing alone.  I may not win every challenge I take on, but I actually do hope that it will make things easier for the next person who unfortunately may have to go through a similar situation, especially those who feel they have no voice or cannot express their voice.

There are many complaints about the cost of health care in the United States.   Causes are blamed by many, from lack of insurance, prevention, and lack of quality health care.

I have a very high tolerance for pain and illness that allow me to give off the presentation, that upon sight, I look like an average middle aged man, healthy, no concerns.  Because of this, I often hear and sometimes participate in uncensored conversations that include how much should be spent on a particular patient battling a certain malady.  It is inconceivable to me, that a country as great as ours, as proud as ours, as technologically advanced as ours, and as morally righteous as ours, that some people feel how much, if any care a person should receive or be denied.

One of my biggest issues since battling cancer more than two decades ago, is the fact that I survived and so many have not, do not, and will not.  This is no different of a situation than survivors of natural disasters, accidents, or violent events.  Why me?  Why did I get another chance at life while a child battling the same cancer as me did not?  Some would argue that I should just shut up and be grateful for my second chance at life, especially since some do not get that chance.

In the case of someone who is sick, judgement comes swiftly as conversations about the ill turn to how the person came to be sick.  After all, it is crucial to the spectator to know if patient is just a victim of circumstance or brought the illness on by their own decisions or poor habits.  So some have no problem having zero empathy for an alcoholic needing a liver transplant, a cigarette smoker needing respiratory treatments, or worse.

There are literally millions, well over twelve million in fact, survivors of cancer.  And of those millions, a majority of us, myself included, now face ramifications (doctors call them side effects) for the decision we made, to save our lives.  These side effects range from minor to major, but from a financial standpoint, add up sometimes to quadruple what it originally cost to cure us.

As I mentioned, because I look healthy, people are comfortable with complaining about people receiving exceptional testing and treatments, calling them wasteful spending.  While I would agree about the costs being extreme, there was no way that I knew 24 years ago, what I would be dealing with today, the fears I would face, the uncertainties I would be dealt with.  Again, as a 46 year-old male, I should expect to be turned down by the insurance company  for repeated stress tests for my heart in spite of my having had open heart surgery.  Forget what doctors know, the insurance companies do not want to keep paying for it.  So as I appeal my case, my symptoms get worse, leading to more extreme testing and treatments.  And with the objections of those ignorant around me I hear, “how much will more should be spent?  when is enough enough?”

I do not know what my decision would have been in 1988 had I known that so many things would happen with me in 2008, 2009, 2010, 2011, and 2012.  And there will undoubtedly be more in years to come.  But I can prove that I had no idea, nor did my treatment team, know what would be in store for me in my future.  But as they now learn about cancer survivors, my fellow cancer survivors such as myself, also learn.  We do our best to inform ourselves and educate ourselves.  It is not my wish to end up back in the hospital a week after I have been released, especially for the same thing I was admitted for in the first place.  You tell me which is more expensive, treat me right the first time or have me come back and treat me some more?

So when the doctor comes into your room, and tells you that your condition has not changed in the three days since you first arrived in the hospital ER, you must speak up for yourself.  No one around me was going to do it for me in spite of the fact of what I came in for, and was no better than when I came in.  And so I challenged the doctor, with the ability that I developed over the years to learn about my care, my body.  I came in with the same issue nine months earlier.  Why were not the same tests done as before?  Why were the same medications that cured me before used this time instead of the cheaper alternative?  Why was the cause not deterimined so that it could be prevented from reoccuring?  And there were plenty more questions that followed.

When all was said and done, nurses and other support staff congratulated me on the way I stood up for myself and for my well-being, whether they were in my room with me or simply heard about my experience.  Friends, relatives, and all the medical professionals involved in taking care of me all realized what could have happened had I been sent home prematurely.

But not everyone has that ability, that voice.  It is my hope that if you are one of those, that you have someone willing to speak up for you.  If you are one of the unfortunate thinkers who believe that too much money is spent on individuals, that is a shame as there is no way that you can possibly know all of the details involved in a particular case to make your decision or opinion.  Wait, you do not have that right to make that decision for me, even if you knew everything about my case.

Today, I am sitting at home recovering.  Unfortunately, I do believe another event will occur.  And hopefully my loved ones have learned invaluable lessons in how to speak up for my care.  My life, and the fatherhood of my daughters depend on it.  And it does not have to be a health issue that will be my next battle.  And those that know me, know that is true.  And they are still here by my side because they know that I would stand by them the same way if needed.

Mess With The Bull…

A person should not have to escalate to levels demonstrated by the movie John Q to get the medical care neccesary.  And a pen pushing insurance company should have no say in what options are given to you as far as your care and diagnosis.  The only people that should be making that decision are the doctor, his staff, and the patient.  That is right, I said the patient.  If an automechanic handed you a bill for $1500 would you just pay it and trudge off?  Hell no!  You would want to know what was causing the interior door light to stay on and why it would cost that much.  There are people who spend more time deciding on a menu item for a night out, than knowing what or why something is happening that they are in an emergency room.

Twenty-four years ago, I blindly went with whatever my oncologist (cancer doctor) wanted, no questions.  He told me time was too important and under the stress I was under from my potential and eventual diagnosis, I was not capable of making any kind of responsible decision anyway.  In no way do I regret the fact that I am standing here today with my family, but I also cannot ignore the things that have occurred to me, because of those decisions made for me decades ago.  And so, nearly five years ago, I made the decision, following my heart surgery, I was going to be a part of my treatment team.  I need as much information as they get, and guess what, as the patient, I am entitled to that information.  It is my life.

It is now day four of my recovery from my second go with pneumonia.  Oddly enough, I ended up with the same doctor who treated me the first time.  And just as the first time, the nurses and support staff were the only reason I did not reach out and strangle this doctor, because he just would not listen.  He did not care.  He had other patients to get out of the way.  I was supposed to only listen to him give his diagnosis, treatment plan, prognosis, and that was all he had planned to give.  After all, he was important, not a piece of filet pink on the inside, seared ever so gently on the outisde cut the perfect thickness displayed every so properly.  In spite of my health history, knowing anything about my vocation, personal life, it was just “take this and get better”.

My greatest fear followed my first experience with pneumonia, I would have to deal with it again.  And this past Monday early morning, I did.  So three days have gone by, six rounds of antibiotics fed through my veins and the same doctor I dealt with has come in to tell me that the current xray “shows no improvement” and that I will probably go home the next day.  Again, I will use the car repair reference.  You take your car in to have a flat tire taken care of, and all the mechanic does is stick a plug in it, and does not seal it.  By the time you get out of the station’s driveway, the tire is flat already, and chances are you will be pissed!  If you would not tolerate that with a garage mechanic and your car, why would you tolerate it with your doctor and your life?  I have some of the greatest support here in my life, and in the hospital here.  Several of my nurses, and even the supervisor of food services who happened to be filling in for an absent employee stepped up as an advocate for me last night and this morning either by encouragement or even willing to complain for me.  This was perhaps the kindest gesture I have ever seen.

I was clearly bothered by what I felt was a hasty and insufficiently informed decision.  The nurses listened to my concerns, the food service supervisor was in the room and overheard, and went higher up in the hospital management.  She came back and told me that all I had to do was say the word, and this “higher up” would intercede on my behalf.  Admittedly, I am not a fan of this hospital as it does not have the greatest reputation, and even under new ownership/management certain figures in this hospital do nothing to change this perception.

This morning, I the doctor came in, hands in his pocket, and started with “so I hear you have concerns about being released”.  As I rattled them off, one by one on a couple of occasions, I caught him slowly inching towards the door.  And of course I let him know that I felt that and informed him that I still had questions, where was he going?

*  why couldn’t he determine the cause of the bacteria (last time or this time)?

*  how can I be released when results are showing I haven’t gotten better?

*  does he not realize the health issues I face from my cancer treatment late effects?

*  why weren’t the precautions followed from last time, when clearly informed and he had the records of my prior infection and treatment?

*  does he understand what I do for a living and how it impacts my recovery before just sending me back to work?

*  why haven’t I been getting any respiratory therapy?

*  why does he refuse to communicate with the specialists that I deal with, especially in regards to immunity and pulmonary issues?

There were a few more, but I got my point across.  Do not get me wrong.  I was going to drive myself bat-shit crazy if I got released today or a month from now with so many uncertainties.  After he left, the nurse offered me a hug and asked if the meeting provided any comfort or ease, which I told her it did.  And I had the same food rep today and made sure she got a big hug from me too.

I found out what it was like to deal with pneumonia last March.  I also found out what it was like to recover from it.  Now I know what it is like to deal with double pneumonia.  To give you an idea, a Philadelphia Eagles football player has come down with pneumonia and will evidently miss the final three games while recovering.  Guess what, the Eagles plan on not paying him as a non-football injury.  So he will miss his paycheck for three weeks.  That is a lot of money, but obviously, his doctors know how long it will take to recover from pneumonia.

Thank you everyone here who emailed me with encouragement and support.  This will probably not be my last visit here and the doctor will probably insist on drawing straws for my care next time.  But it shouldn’t be this difficult to get the care we deserve need, no matter if we have a healthy history or not, no matter if you have the voice to speak up or not.

Deja Vu

It is an odd feeling really, the thought of coming full circle.  I mentioned a little while ago with my “Ghost” story on what it was like to walk the halls of a hospital wing that I was lucky to ever have gotten to see.  On Monday evening, after the ER was done messing around with me, I was delivered to my current residence.  Four floors right below me is the building that houses the rehab facility that I recovered from my heart surgery.

You want to talk about fitting a square peg into a round hole, I not only had the feeling that I did not belong there, but the stares all around me confirmed it as well.  I was 1/3 everyone’s age.  I must have given the appearance of some young punk looking for a cheap gym alternative.  From the first step I took from my bed in the ICU, all I wanted to do was make sure that I kept my heart beating.  I would never have imagined the muscle loss and loss of tone and strength that occurred so quickly.

But having had to recover before from a major issue, my Hodgkin’s Disease, I knew what it was going to take to recover from heart surgery.  And it would all start with me.   So I began my cardiac rehab and it may have been less than a week before I was challenging the therapist to work me harder.  And when they were not looking, which happened quite often in the group sessions, I took the liberty of pushing myself.  Higher inclines, higher resistance, forgetting to start the timer.  By the end of therapy, I had met their goals, but did not even come close to mine, restoring my upper body strength.  The therapist did not want me to do that kind of work out, as echoed by my cardiologist, because upper body strain, especially for a heart patient is no good.

Come on now!  I was not looking to become Tony Atlas but I did want to be able to lift a fork full of mac & cheese to my mouth.  I joined a gym and that was the first thing I did, begin working out my upper body.  Approximately two months into working out, and probably only at about 25% of my goal I felt pain.  Fortunately, it was muscular and not cardiac, but the message was coming across loud and clear.  Getting in shape was going to have nothing to do with how much I could lift, but rather how I could function.

In the years that have gone by, I have been followed by more than a dozen doctors in different sciences all watching the various parts of my body that were affected from my treatments, and now, effected by those effects.

Immunity is a big issue for me.  My spleen was removed as part of my diagnosis of Hodgkin’s.  That is what they did back in the 80′s as well as pretty much any situation that involved major internal bleeding.  It was believed that the spleen did not really do that much, and a person could live without one.  And a person can, I have.  But today they know just how important that useless organ was years ago.  It is probably the main source of your immunity from the cold, measles, strep, chicken pox, pneumonia just to name some.  My situation has left me unable to fight these things even with vaccine boosters leaving me so vulnerable to a crowded elevator or a school with one child whose parent made the choice not to have their child vaccinated against chicken pox.

I had sepsis and pneumonia just nine months ago, and here I sit again, this time with double pneumonia.  As hard as it is to believe, there were no warning signs that I was sick, until I had to be taken to the ER, once by ambulance.  Looking down from my 4th floor window, I know what I have been through.  And experience has fortunately braced me for what I may have to deal with in the future, perhaps again and again.   Pictures of me that you see, if any, do not show what I am going through, and if you see me in public, unless you know me personally, you do not know either.  But inside, I am hurt, both physically, and emotionally.  At times I can be scared.  As I have struggled over the years to find my new “normal”, I have come to realize that I will actually have a new “normal” every day, depending on what I feel like.  And that is what I hope that everyone reading this, or sharing it, will understand about not just me, but millions of other people in similar shoes whether they are facing cancer, heart disease, depression, or whatever is troubling them.  I do smile one day, and then crumble the next.

But before I get out of this hospital, I need to find out what the hell this thing is, and how and why does it get used, and how without getting the floor soaking wet.  So far I have not had any luck.