Paul's Heart

Life As A Dad, And A Survivor

Does Size Really Matter? – Deciding On A Health Facility


Memorial Sloan Kettering.  The Mayo Clinic.  MD Anderson.  University Of Pennsylvania.  The list goes on and on for the top hospitals when it comes to cancer treatments.  There is a different list of facilities when it comes to heart surgeries, pulmonary issues, and so on.  Many of our nations “best” hospitals are “teaching” hospitals, meaning that they are more likely to have the current diagnostic tools and treatments available.

I have taken quite a few moments to decide what hospitals to be taken too, of course ulitmately, I am at the hands of my wife to honor my wishes.  The closest hospital to us just also happens to be the last hospital in the world I would ever want to be taken to.  It has the worst reputation for cleanliness and sterility, in other words, you have a fairly good chance of going home with MRSA.  The longer you stay in that hospital, the better the chances of contracting MRSA.  So it is not necessarily a good thing if a hospital keeps you longer to recover from whatever took you there.  The reason that my wife insists on taking me there?  It is the only way that my daughters would be able to come and visit with me as transportation time alone would be an additional hour and a half.  On a school night forget it with having homework.  So, in that regard, I appreciate being local.  It is a smaller hospital, which recently had been bought out by a larger network, still not on the national level, but the buyout has been expected to improve the quality of the local facility.  I am just not sure that it has.

When I dealt with my Hodgkin’s Disease, I was not really aware of all of the “big” network and teaching hospitals available to me.  I did believe that if I were to go to any of them, besides the great distance, I was not sure that they could give me emotionally what I was going to need, that I would be treated just as a number.  Personally, I needed more than that.  The doctor that I chose worked out of a small network, but more importantly, as all cancer patients probably had the oppportunity for this, I knew a patient personally that he cured, my grandmother.  Granted, she was treated for breast cancer, but he saved her life, he could save mine.  The big risk I took by doing this, he was an older doctor, so there was a chance that I would be treated with older modes of treatment and not the most current available.  But I believed that if I had the confidence in him, I would have confidence in the medicine, and that would get me through.

At various points in my life, I would end up in the hospital and always felt comfortable with the hospital that I grew up near.  It has become quite the network and one of the best in the country.  So when I had some uncontrollable bleeding from an area that no man ever wants to see blood coming from, it was only natural that I went to that hospital.  When it was determined that it was not cancer or cardiac related (yes, blood in the urine can be attributed to a valve issue with the heart), but rather a kidney stone, how quickly that stone situation got resolved depended on where the roaming kidney stone unit was and what day.  Yes, hospitals in my area do not have their own “lithotripsy” machine.  The first time that it would be back at this hospital would be in approximately two weeks, however, it was going to be back in town the coming Tuesday at a hospital that I swore I would never set foot in ever again.  My grandmother had passed away in that hospital, and while it was not their fault as to the cause of death, I did have a problem with their methods of convincing people the importance of extending their terminal lives at the expense of their dignity.  As far as I was concerned, this hospital tortured my grandmother during her dying days.

But for anyone who has ever had a kidney stone, or gall stone for that matter, no one will deny the pain level to drive a six foot 300 pound giant of a human being into a fetal position in pure pain, than a 4mm stone.  I needed to have this resolved before the stone set to travel from my kidney.  I was going to have to have the lithotripsy (shock-waving the kidney stone into obliteration), at this hospital.

Now let me tell you about how small this hospital is.  I was the first scheduled appointment that Tuesday morning.  Now remember, this is a fully functioning hospital.  It also evidently has hours of operation.  So the security guard unlocks the door at 5:30am precisely, and I am already third in line.  I cannot see what is happening, but I do see a lot of head-shaking.  Just like that, I am called to the receptionist and begin my admission, or the process that the hospital will be using in place of that procedure.  You see, when I offered them my driver’s license and insurance card, they told me that their computers were not operating.  They did not state if it was expected to be a long drawn out process or not.  I stated that I had a 5:30 procedure scheduled so it was urgent that I be registered and they offered to make a photo copy of my indentification.  Fifteen seconds later the woman behind the desk came back and said that their copying machine was not functioning either.

Did I mention that I did not want to be in this hospital in the first place?  And so, without any identification, which I had to store in a locker while I was in for the lithotripsy, I was escorted into a room, where I would be anesthetized, with no identification, no hospital bracelet, nothing.  And so, the procedure went on, because I could not risk returning to the state of pain that the pea-sized stone had been causing me.  And to add insult to injury, they actually allowed me to sign myself out of the hospital later that morning, totally unattended.

I realize that the last example was an extreme case.  But it did happen.  And I went against my gut feeling in being treated at this hospital.  I got lucky compared to how this episode could have turned out.

My heart surgery, that was a totally different story.  I happened to be at that hospital in a connected doctor’s office.  I was already there, but I was already aware that the hospital had a good reputation.  But even that reputation is limited when it comes to long term cancer treatment effects.

When I found out, that I was not done with my cancer history, I had the major decision to make.  And it did not even come down to the biggest hospital or the hospital that made me feel all snuggly and warm.  I needed a network that had history, studied long term side effects.  My prior posts have gone into great detail on just how urgent my decisions can be.

As you can see, it all depends on the situation, do you go with the big network or the little hospital.  Does size really matter?  To some it does, to others, it’s what you do with what you know.

February 1, 2013


Happy Anniversary Wendy.

It is our 11th Wedding Anniversary today.  The average married couple if they remembered their anniversary would probably exchange a gift or two, giving a card, a dinner, and perhaps a little personal time.  It was sort of supposed to go that way today, even though it was going to be spent in Manhattan at Sloan Kettering Memorial for yet another consult.

It did not go as planned as our youngest came down with a seasonal bug, so Wendy stayed behind to care for her, and I made the road trip alone.  After two years, I am fine tuning my travel trying to find the most efficient means of travel yet being fiscally aware.  Today I drove to Hamiliton, NJ and got the train into NYC and back.  This shaved about an hour each way off of my travel time.

I am not sure what the issue that is getting the main attention right now.  Though the latest chest xray says that my latest bout with pneumonia is over, I still feel like crap.  An email from one of my doctors informs me that I still have only half the immunity against pneumonia in spite of my latest bout.  That unfortunately will mean more vaccines.  Yuk!!  In fact, as some new thing is taking over, I am wondering is it going to develop into pneumonia.

I arrived home early enough to take Wendy and the girls out to dinner, try and salvage our anniversary.  Unfortunately, each year seems to bring more and more health challenges to me, and each year, I must fight harder and harder to show that I am still a functioning human being.  The next couple of days do not bode well for me keeping things romanticly entangled as I was out campaigning for our local school board the next day, the Super Bowl on Sunday, and then her birthday on the 4th.  The next day I am to have another test, a barrium swallow to confirm the need to do an endoscopy which would be done with a colonoscopy, hey!, just in time for Valentine’s Day complete with overnight accomodations in NYC.  Romantic indeed.

Such as the life of a long term cancer survivor.

Another Anniversary – What A Way To Spend It


When I started this project, “Paul’s Heart,” I had two motives.  The first, I wanted to see if I had what it took to write a book, about what, I was not sure.  But I needed to see if I had the ability and the commitment.  And second, I wanted my voice to be able to help at least one person who is struggling with something.  By documenting the many struggles that I face and have faced, I hope that it gives hope and courage to get beyond the struggle.

I have been  very public with some personal stories.  I figure that once I made the commitment to “blogging”, transparency is what would make my blog successful.  Some of my stories may be difficult to read because they stir up old emotions or memories.  Admittedly, the stories can also be quite graphic, and I try to give fair warning when those stories reach that level.

Tomorrow, I will be meeting with yet another doctor to discuss a recurring symtom that was so difficult to deal with just a couple of years ago, as it appears it is returning.  I do not want it to return to the level that it had gotten to before.  I will be discussing the procedure of an endoscopy, which is basically going to be pictures and biopsies if needed down my throat into my stomach.  Care must be taken because of the overexposure to radiation during my treatment days.  The doctor will be looking for what is causing an increasing inability to swallow and frequent nausea (with no warning or apparent cause).  If possible, this will be done along with a colonoscopy, often referred to as a “man’s worst nightmare.”  I have resisted this procedure, in spite again of the radiation history as well as some other unusual symptoms.

But it is time, time to “man up.”  But instead of a night out with the guys, or watching a football game, I now have a new excuse for getting out of our anniversary dinner tomorrow, and Valentine’s Day as well.  Wendy could not possibly hold it against me that my doctors want to check me out for my own health, could she?

It will be eleven years tomorrow, and Wendy will have been dealing with all of these health issues with me for nearly half of those years.  She knew about my cancer history when we started dating, my inability to have children as a result of my treatments, but nothing could have prepared her for the statement, “your husband needs to have emergency bypass heart surgery.  We have him set up for first thing tomorrow.”  And with that, began a different direction than we had planned for our lives together.  But I could not, and I emphasize, would not have been able to do it without her.

So our anniversary tomorrow will not be the most romantic, if at all.  Depending on my arrival time home, we might be able to get a quick dinner.  As for Valentine’s Day, um… I am not sure what to expect as far as how my belly will be feeling after having cameras going in through each end.  While the endoscopy is not usual for the average healthy person, for someone with my health history and radiation exposure, it is common.  But a colonoscopy is common.  I have tried to avoid it.  I know the benefits of detecting colon cancer early.  So, for all my reasons in delay, I will dispell those myths following the procedure, after I “man up.”

Happy Anniversary Wen.

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