Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “disease”

The Roles Of Vaccines

Vaccines.  We all got them as babies. and then, we had to get more in school.  I remember waiting in my first grade assembly line, we were getting our measles booster.  It was this loud air-powered gun that hit your flesh without any kind of warning.  It hurt like hell and left a round imprint on the outside of your biscep.  But other than tetatnus shots, these on average would be the last vaccine’s many would see.

The concept was simple.  Get the shot of the disease you are trying to prevent (either in live form virus or dead)  which would then trigger your body into an immune response, making antibodies to help fight off a future infection.  This is how getting the measles shot, chicken pox vaccine’s prevent getting the actual disease, but if by chance you get the disease first, if your body’s immune system is working properly, and with some luck, you will survive and build up immunity on your own.  This is why most people only get Chicken Pox once, or do they?

There are vaccines available for so many things today from polio, HPV, and a new strain of flu every year.  There are also vaccine’s against pneumonia and meningitis.  But these vaccines also have the possibitlity of giving someone a false sense of security.  We have all heard that “this year’s shot does not prevent all flu’s from occurring.”  Measles and polio we are pretty sure it is one shot and done.  We get the MMRV for measles, mumps, rhubella, and varicella (covers chicken pox) so that we do not get the chicken pox.  Researchers now believe that another booster is needed.

Back in the days of  my diagnostics, I had a procedure done called a laparotomy.  This was the diagnostic test being done, which was to determine what stage of Hodgkin’s Disease I was in.  The procedure involves going in through my abdomen, and removing my spleen, some lymph nodes, and a biopsy of my liver.  Involvement of any would determine my staging, and treatment.  When I questioned the removal of the spleen, and how we can live without it, as so many do, I had been told while it does have a purpose, we can live without it.  And we can live without it, I am proof.  Spleen removal was also popular for people who were in car accidents or had other severe trauma with interior bleeding.

When you realize the amount of things that a spleen does:   main function of the immune system filtering out old red cells while holding extra blood, hemoglobin is metabolized so that its byproducts can be handled by the liver, antibodies are removed of their bacteria just as if it were a large lymph node.  Today researchers know that the spleen plays a vital role in recovering from a heart attack by helping to regenerate cells.  The spleen does all of these things, yet we can live without it if we have to.

The bad news is that there are precautions that have to be taken if you become “asplenic” – aka, without a spleen.  Risks of infection and contracting illnesses are much higher.  A simple cut on the finger, some dental work involving scraping away bacteria (that is why we floss people), a co-worker who decides to tough it out rather than use a paid sick day, all increase our risks of not only becoming septic, which for the majority of patients is fatal, let alone those without a spleen.

So what do we do if we do not have this “non-vital organ” that clearly protects us from infections and diseases.  In my case, prior to my splenectomy (part of the laparotomy), I had been injected with the Pneumovax vaccine.  At the time I was told it would be for life.  Since then, the value has been bumped up to needing every ten years or so.  But in my particular case, the Pneumovax has not worked.  Part of my long term cancer surveillance has included monitoring my titers for pneumonia and meningitis.  Titers are simply proof that your body reacted to having been exposed to that particular illness.  My titers showed nothing for either pneumonia or meningitis.  Over a period of 3 years I had received over 10 Pneumovax shots and at least 6 menningicoccal shots.  As far as I can tell, I have been okay as far as the titers for menningitis.  But I am majorly struggling against the pneumoccal titers.

You need to understand,  The Pneumovax only protects against one type of pneumnia I believe.  The problem is, there are many many more types.  So after a bout last year with pneumonia and sepsis, and another bout with double pneumonia, and all of the shots I have taken, my body has still only generated enough titers to show 50% protection.  Simple terms, I am nowhere near the protection I need and am now faced with yet more vaccines.  Now they will try something called Prevnar, which is a pneumococcal vaccine that covers several types of pneumonia to see what that does for me.

It sucks really.  I have gone through all of those vaccines, and twice last year, I came down with severe cases of pneumonia.  Worse yet, I had no obvious symptoms (breathing, coughing, congestion, NOTHING), except by some dumb fluke, my wife took my temperature which resulted in a trip to the emergency room both times, one by ambulance.

At this point, I am scared to have any more junk injected into me afraid of what all that exposure will do.  I have to be TB tested every year, which is basicly done with the skin test, you are injected with TB.  For Flu, you are injected with the flu, either live virus or dead virus.  I can never receive a live virus vaccine, especially like the one from a couple of years ago for the swine flu.  I have been fortunate, having actually had chicken pox, I have not had shingles.  Shingles for a long term cancer survivor, especially one without a spleen is pure torture.  And I know several people who get them many times a year.  The vaccines are not an option because they are live virus vaccines.

So what is my best defense?  You.  Both of us, wash our hands.  Cover our mouth and nose when we cough and sneeze, then sanitize our hands again.  Stay home from work if you are sick.  And while I respect a parent’s right not to have their child vaccinated, you do not have the right to expose my child or have my child become a carrier and infect me.

On my Med Alert bracelet is a lot of information about me.  But there is one important word on there that gets everyone’s attention when treating me… “asplenic”.  This lets every EMT, every nurse, tech, doctor, know that extra precautions must be taken with me if I am being treated.  Now you know.

no to shingles/live vaccines

Why I Changed Oncologists (Twice)

There are many factors that went into choosing my oncologist.  But no factor to me as important as trust.  I selected the oncologist that treated my grandmother for her breast cancer a few years earlier.  She had tolerated everything so well, had great spirit, as odd as it is to describe a cancer journey as a “positive experience,” my grandmother presented her case in that manner.  But I had a confidence in Dr. M before I had even met him, because here I was, in the same office that my grandmother was in, several years before, and was still alive at the time I was there.

And during the beginning of the original process, everything worked like it was supposed to.  Dr. M listened to me, assured me everything was going to be alright, and explained everything that was being done and why.  He even visited me in the hospital following one of the testing procedures I had done.  But when it was time to make the decision on the course of treatment, radiation or chemotherapy, he gave his recommendation, which I had other ideas.  I had turned away from chemotherapy followed by radiation.  Instead, I would just undergo radiation therapy.  It would allow me the quickest opportunity for me to recover and subject me to fewer visible side effects.

Unfortunately, as Dr. M had feared, radiation alone had not done the job completely as I had hoped.  Instead, new disease had appeared.  This time, Dr. M was not giving me any option.  I was told chemotherapy was coming, possibly more radiation, but definitely chemo, and starting within a couple of weeks.

My personality dictates that if I have a question, I want an answer to it.  I am willing to walk away from whatever the circumstances or become quite combative if I require answers that strongly.  I had my consult to start chemotherapy with Dr. M.  As I am known to do, even twenty years ago, I use notes to remember details of comments or questions.  Given how intense the chemotherapy cocktail was going to be, I had a lot of questions, about a page and a half of legal paper.  Dr. M walked in and asked what I was holding.  I showed him and he dropped the papers on the exam table, “I don’t have time to answer all of these questions.  This is ridiculous.  What do you think this is?  You either want to get better or you don’t?”  With that, I walked right out.

The thing about serious illnesses, is that most of us do not realize that we do not have to take these monumental efforts on our own.  There are people out in the world to act as an advocate for you, if you cannot voice your opininions and questions.  I had already been seeing a therapist to deal with my cancer horror when I went straight to her office from Dr. M.  Ilona asked me what I wanted to do and I told her, “I want to live.”  But I had questions and Dr. M. refused to answer them.  My confidence percentage level in him dropped to single digits.  I wanted a new doctor but did not want to start all over with new testing in the event another doctor would want his own results.

Ilona made the suggestion that perhaps I switch to Dr. V or Dr. P who were in the same practice, but perhaps had the more interactive personality that I needed.  I would stay in the same practice, meaning I most likely would not have to undergo new tests.  I liked the idea but was uncomfortable with implementing this change.  Which Ilona offered to do on my behalf.  Also, Ilona offered to speak to my oncology nurse to see if she would be able to answer all of the questions that I had.  After all, Brenda would be the one adminstering the chemo.  And Brenda’s motherly care was already engrained in me.  She took care of me like I was her son.  And I trusted her.  So, I spoke with Brenda about my questions, and the following week I began chemo with Dr. V.

About a year after my treatments had ended though, another issue had come up, one that I had discovered by mistake, and one that I was never intended to find out.  With no real purpose other than follow-up exams, the only real money with me, was by doing bloodwork.  I know this sounds like a very ungrateful statement.  But I will justify that.  By my third follow-up exam, a wierd process was happening.  I was having to go back into the doctor’s office to have my blood re-drawn for testing.  Okay, so I do not like needles, and was not crazy about having to take off from work again, but hey, the tests were important.

But then I began to get rejection notices in the mail from my insurance company.  This was odd, because my coverage literally covered me for everything.  Further review of the statement showed “duplicate billing”.  It was obviously some clerical issue so I was not worried about anything.  But then I got an actual bill from the doctor’s office.  My benefit plan took care of all expenses other than copays.  So I called the office to find out why I had gotten a bill, and I was told “because you had blood drawn.”  I said, “I know, but they couldn’t run the tests on the blood because it hemalized.”  The clerk, who also happened to be the doctor’s wife said, “you have to pay.  You had the blood drawn.  The insurance company isn’t paying for it, so you have to.”  The key was finding out that blood usually hemalizes when it is drawn, by the tech.  Simply, the red blood cells are outer walls are ruined.  So they knew the tests could not be run, yet submitted a bill to my insurance company anyway.

That is when I did a little homework, and discovered that blood hemalizes when it is drawn, not during the testing.  So, the blood never made it to the lab.  Why the hell are tests being billed that were never done?  This was the third time that this has happened to me.  I called a family relative who was a nurse at the time, and confirmed everything with her.  Then I called the doctor’s office back.  I told them, “I want all of my records transferred to…” and then gave them the name and address of the new oncologist I would follow up with from then on, and then told the clerk “why”.  Before I could go any further, the clerk then said to me, “I will personally take care of that, and you can consider your balance paid in full.”

A dishonest business practice left me with a pit in my stomach.  I was supposed to be grateful to this practice for saving my life.  I did not pursue any legal action toward them as Ihoped that the fact that would worry if I would go public would scare them into straightening out.  I have never been in contact with them since, but I do still think about the situation, and how many other patients might they have done this to.

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