Paul's Heart

Life As A Dad, And A Survivor

Just Another Bump In The Road


Yesterday did not go as planned, or as I expected when I wake up in the morning.  The fact is, as was pointed out to me, I had not been “looking” right for at least a couple of days.

If you have been reading my blog, you already know that my health history is kind of complicated.  One of my issues, is my breathing.  A complication of the extreme radiation therapy (amount and method no longer used), I have what is called “restrictive lung disease”.  By its simplest description, my lower left lung lobe is completely useless.  Pulmonary function testing puts my capacity at somewhere around 75%.

There are two things that will aggravate my breathing, physical exertion and the weather.  By physical exertion, it is hit or miss what will cause labored breathing.  Walking a slight incline or climbing steps can bring on an attack, usually not too severe because once it hits, it has my attention and I pretty much stop in my tracks to let my lungs catch up.  The weather affects me three ways; humidity, cold air, and wind.  These flares are a bit tougher to control, because when they come on, I have nowhere to go.  If I am walking from the parking garage at work to my building, I am lucky to get half-way there before it hits, and cannot turn around, must not stop to rest because that does not get me out of the environment causing the flare, I can only go forward.  This will usually take anywhere from a half hour to forty-five minutes to settle my lungs down.  With the wind I can usually get away with some sort of face covering which reduces the incidence or severity.

So yesterday, I had my ski neck/face covering on, and my breathing was no different than most other days, but instead of my lungs easing up, the breathing got harder, more labored.  I am afforded breaks throughout my work day, so at my first break, I did all I could do get this episode to resolve.  But it did not.  In fact, it only got worse.  By eleven o’clock, my legs began to feel like lead weights, and my feet were now dragging.  Unfortunately, I am a stubborn ass and was still convinced that I could get this under control, and now my lunch period was here.

Through lunch, no resolve and I returned to work.  The heavy feeling in my legs turned to a burning in my thighs.  And then the heaviness spread to my left arm.  I made the call.

“Wendy, listen to me.  Call your dad.  He HAS to pick the kids up.  You are taking me to the hospital.  See you in five minutes.”  A co-worker had already called the hospital ahead of time and told me of my arrival.  One thing that I get ridiculed fairly often by friends, co-workers, employer, insurance company, and occasionally family, is why, WHY do I travel all the way to New York City or Allentown for my care, when there are so many other hospitals and doctors around where I live?  I am going to tell you.

Unlike the last two Emergency Room visits (this is my third in less than a year), for the first time, when I warn the ER doctor about my complicated health history, he took it so seriously.  I told him to take the phone number and name off of the medic alert bracelet and call it.  His diagnostic plan and treatment options depending on his willingness to be open-minded for what I call a “trainwreck” that he was going to be dealing with.

When he came back to the room, he told me, “I can understand why you deal with them.  Your doctor is one of the nicest practitioners that I have ever spoken with, and so willing to tell me everything I needed to know.  In fact, he sent your medical file immediately.  I am so impressed.”  Finally, I was going to have a caregiver besides my family practitioner and obviously my long term survivor doctors.

That was the easy part.  The most stressful part for me (read U.R. Sharpe in “Pages”), are needles.  I had a total of seven people trying to get blood from me.  Only two were successful, the others were forced to give up because of my stress level.  That also resulted in having to try an alternate test for blood clots, instead of contrast through IV, I underwent a Nuclear Lung Scan.  Sounds scary right?  Not when you have had as much radiation as I have.  And instead of drinking it, I had to inhale it, to get into my lungs.  But you see, I do what I have to, my life depends on it.

 

There were diagnosis that he was suspecting based on my health history, and could get right to them with the information that he had already in his hands.  Blood clot, eliminated by way of blood work, and heart attack eliminated via blood work and EKG.  Other workups cancelled out pneumonia (things come in threes do they not) or infection.

So the doctor’s opinion was either that my restrictive lung disease is getting worse or perhaps it is one of the underlying cardiac issues that I am aware of that are being followed.  Because I am so critical with my care, I do not have a local cardiologist, which the ER doc was more than convincing in his argument, that with New York City being a two hour drive away, it might just be a good idea to have someone local.  This hospital network just so happens to have one of the highest rated cardiac reputations in the area.  And because of the way this doctor approached me from the beginning, instead of being defensive, I am now focused on what needs to be done.

This morning the appointment with my new cardiologist has been made, and I am finally taking it easy.  Man do I hate doing that, and it will be another mandatory day tomorrow.

So the lesson you have hopefully learned, do not wait until your body is 3/4 of the way affected to get to the emergency room.  You should not need that much convincing that something is wrong.  This is not my first time, and I am positive it will not be the last.  But it is the shortest stay I have had.  And it is because I reacted sooner.  Yes I said that.

$.04 – Two Cents For Each Opinion


We do it when we look for auto loan rates.  When we go shopping, we compare prices and quality.  Even if there is a movie that we want to see so badly, but the critics said it stinks, we seek out and value the opinion of someone else, because they might feel differently.

Then why would we not do it for a medical opinion?  Two of the most common reasons are passivity and the belief that our lack of knowledge does not qualify us to question the doctors and technicians who clearly should know, right?

When the decision is more radical than simply selecting a medication, you have the right, check that, you have the obligation to ask questions, to get a second opinion.  When time allows you, and in most cases it probably will, you need to ask the question, what else can be done.

A pregnant woman who is five months into her term is recently diagnosed with Lymphoma.  This particular situation occurs quite often (not to be confused with “because of the pregnancy she developed Lymphoma).  The mother is faced with so many decisions,  can treatment wait until after the birth or  what effects will occur to the unborn child?  The mother will not be concerned with hurting the doctor’s feelings by requesting or demanding a second opinion.  She needs to know and understand all of her options, and the possible outcomes of those decisions.

One of the first young men that I counseled had been diagnosed with a cancer that would have left him with a urine bag, not to mention affect the possibility of fatherhood.  Clearly upset, shaken, and defeated, he was surprised when I had asked him, “what did the second doctor say?”  A second opinion took him out of state, but to another research institution that gave him an option of remaining completely intact, functional, and cured.

I have to stress, sometimes you do not have this luxury.  My heart surgery was one of those moments.  A stress test had discovered a blockage.  Its severity had not been known, but the cardiologist was certain it could be taken care of with simple catherterization and stinting.  Only when they got in there, did they realize the opposite, and far worse.  It was a common condition for this hospital to see, but not the cause.  The doctors felt that they could save my life, and while I was coming out of the anesthesia from the earlier procedure, my wife gave the authorization to schedule the emergency bypass surgery for early the next morning.  In that case, time was not an option.

But when you have the time, and face it, other than your heart beat stopping you will have the time, consider a second opinion, especially when it comes to something radical like a mastectomy or the removal of a lung.  You have to understand, if you go to see a surgeon for a diagnosis, their specialty is going to be surgery.  If you go to a radiation oncologist for a cancer diagnosis, chances are likely, the doctor will push radiation.

I am not a doctor, nor do I play one on television.  But when it came to my Hodgin’s Disease diagnosis and treatments, there were a total of eight doctors involved.  For my late effect issues, I have more than a dozen.  I am certain that my insurance carrier is not happywith all of the bills, but I am alive, and my quality of life is as best as it can be, and would have been far worse had I closed the door on the other options made available to me.

I honestly believe, that even 23 years later, if my radiation oncologist were to bump into me on the street, he would probably still swear that he wants me to undergo preventive radiation therapy.  I believe this because he chased me for the first five years of my remission.

There is the chance that a doctor may get annoyed with a delay for a second opinion, but if the doctor is worth anything, they will welcome a second opinion, a chance to discover something that might have been overlooked, some newer option available.  Just as it only took a decade to come up with a better and safer treatment for Hodgkin’s, unless my oncologist was kept well-informed of the progress, I would not have had the options. 

I am blessed to have a great team of doctors who work with each other, in spite of the geographical distance.  Time is rarely wasted as they consult with each other, which has become my second opinion.  They know that if they did not do it themselves, then I would do it for them.   Doctors know time is important, but so is the sanity of a patient that all efforts to minimize the effect to quality of life have been exhausted.

Thank You So Much


When I got to my computer tonight, I expected the usual 40-50 hits, but instead, I have seen over 450 to see the post on my anniversary, and the other stories beyond.  This means so much to me, and hopefully, you know someone who might get help needed by reading my writings.  Again thank you.  Tonight, I am speechless, over 2,000 in a little over 2 months.

 

Paul

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