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.