Paul's Heart

Persistence Pays Off

I travel to Manhattan to get my late term cancer survivor care.  I travel an hour away just to see my family care physician.  There is a reason.  And between Monday and Wednesday confirmed why I travel so far.  Somewhere in my lifetime, medical care changed.  Whether it was due to mandates, pen pushing insurance companies who know everything there is to know about a patient without seeing the patient. or ambulance chasing lawyers who eat their lunches in their cars while parked in a doctor’s office parking lot, much of medical care has changed.  I say much, because I do not believe this of my general practitioner.  She is only my third family physicain.  My first was still practicing medicine until his mid-80’s (thanfully I did not get more than a cold, his hands shook like crazy).  My second retired, and my third has been there ever since.  Notice the politeness as I do not put a number of years.

Her practice grew and was joined by her husband, and a third doctor.  With the partners came bigger locations, and even a very appropriate name for their “health clinic.”  I have known both husband and wife for a long time, but in general, I see the Mrs. Dr.  Both are very familiar with my unusual health background, and are both very educated in current medical trends.  The best thing of all though with their relatively small size practice (as far as partners are concerned), is that with each visit, I do not have to repeat my entire health history so that I am certain the doctor does not do something to me that should not be done.  Another great thing is that she (and he as well) know me well enough emotionally, to know what my mental presence is like and if there could be something underlying.  Also, they are no bullshit.  They will question another doctor’s prescription if it is about side effects, or simply a drug name (one for another).  And the icing on the cake, they welcome the opportunity to get input from other doctors in my care.

So on a general level, I am taken care of.  Under normal circumstances, specialty care is a lot different.  The orthopedist.  The endocrinologist.  These doctors and others can take months to get in for an appointment.  If you are in an urgent situation, you are told to go to the emergency room, and at that conclusion, to go see that same specialist who sent you to the ER, three to four months from now.  The health hamster wheel goes round and round.  Even a specialist dealing with pulmonology and cardiology can take longer than necessary for the patient’s needs.  It was my heart episode that I learned a very valuable trick.  Have the doctor’s office make the call to the specialist for an appointment.  The doctor carries a lot more credibility and the issues do not get hidden by emotion and fear that a receptionist loses interest in the severity of your call.  Speaking of which, my doctor has some of the best office staff working with her as well.  When I call, and I explain a situation as urgent, they know the difference with me, urgent, and “I can wait.”

Following my heart surgery, I had already had a cardiologist, and was also dealing with the most knowledgable long term cancer doctors in the world.  But the problem was, my cardiologist would not recognize the cause behind the need for the open heart surgery, the exposure to the severe amount of radiation as treatment for my Hodgkin’s Disease.  Result, fired him.  The next year for a follow up, same thing with another cardiologist, and same result, fired him.  I tried once more, and even got to see the chief of cardiology at what is a very large and successful hospital network in Philadelphia, especially knowledgable about cancer, and fired him.  All because of what I knew to be true, each cardiologist seemed to disregard.

In the following years, I have had several trips to the emergency room, one by ambulance of at least two hospitals.  Fortunately, at least they realized my being asplenic as a concern, as anyone would be, but again, did not want to hear about my late effect issues.  Until Monday.  On that day, the very first doctor saw the med-alert bracelet, called the telephone number on it, got the actual doctor that I see, and within minutes had my entire late effect history at his fingertips.  Which I believe made the difference in the tests that would be ordered to diagnose me, and eventually treat me.

And it was with that, this ER doctor also referred me to my new cardiologist.  And it is official, I will see him again.  It was less than five minutes before he was telling me the harsh things that had been done to me, and though he felt my episode on Monday was more likely a pulmonary issue, he wanted to rule out other known issues to see if they had gotten worse.  Unfortunately, worse does not necessarily lead to treat because of the risks involved.  Most of the other cardiac issues are all “wait until have to” situations.  But the bottom line, his orders and tests would provide answers and eliminate possibilities.

Dr. G said to me, “allow me to give you some peace of mind.”  I stopped him right there and told him he had already done that by not dismissing my history, my knowledge of my history, and the involvement of the rest of my treatment team.

So his other recommendation was to reach out to a pulmonologist locally and get my lungs followed up on.  Having two episodes of pneumonia, both very serious, he felt that perhaps my known pulmonary issues might be getting worse.  Again, this would just lead to the “waiting” approach as well.

When I got home, I got on the telephone and called the office of a pulmonologist that he had recommended.  Again, I was immediately convinced just from talking to the nurse, when she heard the abbreviated version of my health history, scheduled my appointment, but assured me that after she spoke with the doctor, not to be surprised if my appointment got moved up.

It has taken too long to finally get to this point.  And there are so many of us out in the world, over 12,000,000 survivors and so many have no idea why they feel like crap years later.  And then they settle for their doctor just stopping at “it doesn’t make sense” when a symptom is sworn to be real, but the typical and common testing and guidelines do not give the answer.

I am alive today, because my family physician made a decision to order a test on a 42 year old man, that would typically not be ordered.  And her office got the appointment made.  Otherwise I would have probably waited a couple more months because I would not have been able to convince the cardiology office of the urgency.   And she did.  For that I will be forever grateful.

My family doctor’s care has set a very high standard of expectation.  I settle for nothing less.  It is clear, persistence has paid off.

Noreen, Brenda, and Illona

If you are a caregiver, doctor, nurse, technician, then this post is for you.  While undergoing a lung scan last evening, I had a conversation with my tech.  As I am known to do, I make sure that everyone involved in my care know how much I value their knowledge and experience, and am thankful that they have played a part of saving my life.

This step in my care began three years ago.  In recognizing my second decade completed having been cured of my Hodgkin’s Disease, I realized one thing I had never done, and all of a sudden, there was at least one thing I needed to do, to bring closure to that history.

It is probably a safe bet to say, that most of our first-responders and medical personnel never get to hear the happy endings, to our health crisis, whether it be an accident or disease.  I wanted to start by letting three women know how important a role, their careers were to at least one person.

Noreen was my radiation tech.  She was charged with my radiation treatments for thirty days.  She made sure that I was comfortable every time I laid on the table for the linear accelerator.  We joked my very first treatment when the linear accelerator broke down.  All of a sudden I was having flashbacks to Bill Bixby as the incredible Hulk and wondering if that could possibly happen to me if things went wrong.  From that point on, I was not just a number or patient, she treated me like a person, who needed extra care.  When I found her, she was still working in the field of radiation technology.  And she was so thrilled to see me, while at the same time, apologetic.  She was sorry for the issues that have developed as a result of my radiation treatment, and she assured me that while they knew radiation was bad, they had no idea just how bad.  But today, the technology today is just so improved, less radiation and more refined and direct radiation is better that than the massive doses of scattered field like I received.  With computers and technology, the field of radiation oncology has improved so dramatically.

Brenda was my oncology nurse.  She was the difference between cure and fate, literally.  As my employer argued for better health coverage for me, she did all that she could to ease my fears about chemotherapy.  And when it was finally decided that I could have my treatments done in the office, under her care, I knew I was going to make it.  Brenda had a mother touch about her.  I was not just a patient to her.  I could have been her son.  My questions about the unknown from the chemo were always addressed because of her.  My fears, put to rest.  My ability to tolerate the treatments, and fight each cycle, was because of her care.  Brenda had retired by the time I had found her, but she was actually volunteering in the hospital where I was treated.  She was now concentrating completely on the gift that she possessed from the time that I met her and beyond, care and empathy.  She was still doing what she did best, comforting those dealing with one of the most scary things a person can face, cancer.

Illona was my advocate, my counselor, my rock.  When I was my most scared, she is the one who would act on my part, reaching out to the doctors that something needed to be better explained to me, or just needed to vent.  Sadly,  I never got to tell her how much she meant to me, as the cruelest of ironies, she passed away several years ago, to the disease that she counseled so many, cancer.

CURE Magazine every year offers a contest for the caregiver in cancer that was influential in their treatments.  But the patient themselves have to write the entry.  If you have someone in your life, who made that difference to a patient (or yourself) in a battle with cancer, what better way could you honor or pay tribute to someone who has made the ultimate emotional sacrifice caring for so many, and knowing that they may not survive.

Noreen, Brenda, and Illona (I know you are up in Heaven), thank you.  I could not have done it without you.

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.