Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “pneumonia”

Bravery


Bravery is defined in Merriam-Webster as courage.

I decided to look this up today.  A co-worker was having a conversation with me, coming to find out everything that I had been going through in just the last several weeks.  And his comment to me was, “You’re really brave.”  And I looked at him like I was almost hoping for a hint of sarcasm or even some foolery.  But for once, he meant it.  And then he repeated it, “You are brave.”

The first time I heard it, I was uneasy.  I was hoping the conversation would end, but when he said it the second time, I knew that I had to deal with it.

In my life, I am hard pressed to find even one instance in my life where I could be defined as brave.  I have never fought in any armed service.  I have never broke up an attempted bank robbery.

But when people find out that I have beaten cancer, had open heart surgery, two cases of pneumonia (one with sepsis and the other double pneumonia), kidney stones, all kinds of late issues from my treatments, I get, “You are brave.”

When I think of “bravery”, I think of men and women who run into a burning building, police officers who put themselves in harm’s way every day, an airline pilot flying a human missile loaded with hundreds of lives, a teacher shielding her students from a lunatic’s bullets.

No, I am not brave at all.  I simply did what I had to do.  I have two beautiful daughters who I know love me so much, it would devastate them to lose me.  I have no choice but endure if my body and mind are capable of doing so.  In the second half of my life, I have met so many people who have faced relapses of their cancer, multiple cancers, those who struggle with their survivorship from the treatments that saved their lives, and sadly, those who lost their battles.

I have always said that I would not go through anymore treatments if my Hodgkin’s Disease came back, that is, until my daughters came along.  One of my dearest friends has faced nearly 50 surgeries all having to do with her surviving her cancer treatments, this along with a battle with a secondary cancer.  With so many close calls, not just near death, or in some cases, flat lines, she continues to trudge on to this day, not only a proud mother, but the happiest grandmother, something that she never thought she would ever see.

I do not know how she would react if I told her that she was brave.  I know on occasions when I have talked with her on the telephone, I have told her that I was speechless for words to how I felt with her continued struggles and survival.  It would be easy for her to give up I think.  She has been through so much.  But the fact is, she has not given up.  It is with her example that I can never make that decision either.

And so, I am watched periodically, whether month to month, quarterly, or annually.  There are things that have been identified and can be dealt with.  I go to my appointments not afraid, but confident in my caregivers that things will be dealt with sooner than later.  That is not bravery, that is trust.  As for the all-of-a-sudden stuff like the pneumonias, the cardiac issue, some kidney activity… a little luck does not hurt either.

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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

Stay Home If You Are Sick? What If You Cannot?


Your child has a fever or vomits in school, you get the phone call to come and pick the child up.  Even when there is only ten minutes left to go in the day.  Last year our school district came up with some goofy policy in dealing with lice.  To be honest, I am not sure who does the actual determination as far as contamination when it comes to eggs and nits, but once again, the kids get sent home.  For the child, it is no big deal.  If there is homework missed, it would probably go home with a classmate if it was important, or a test would just be made up when the child returned to school.

But as adults we are expected to endure much more.  Not only are we expected to get to work, crawl into work, or be rolled on a stretcher into work, but we are expected to be exposed to all kinds of germs, bacteria, and viruses.  Currently, we are in the midst of a major flu outbreak.  It all depends on which media source you want to listen to, to determine just how bad the outbreak is every year.  A few years ago, it was the bird flu that was concerning everyone.  Last year swine flu acually led to my company having an attendance policy just for that outbreak.

If an employee had any sniffle, the company wanted you to make the decision to stay home.  Of course, we had a strict attendance policy that did not pay the employee for the first three days out sick.  But if you were sent home from work by health services suspected of swine flu, you were not allowed to return to work for seven days.  So the employer sends you home at your expense for three days and then you get paid for the remaining four.  The kicker is that the reprimand system kicks in at five days.  Nine days out you are suspended for five days (that is right, you are suspended five days for inconveniencing your employer if you are sick nine days in a year).  But at day twelve, potentially you will be fired, for being sick.

Consider this, whether paid sick time or unpaid, absenteeism is a huge expense for a company to absorb.  It is definitely worse if the employer has to pay the absent empoyee to do nothing at home, while expecting those who have come into work to make up the lost time, often without any extra pay.  So it becomes an accepted and tolerated procedure, reprimand the employee for not coming in to work, whether withholding pay, or by punitive actions such as suspensions and terminations.  The ironic thing is that this usually has no impact on the person who abuses any attendance system but has exactly the opposite effect on the employee with the legitimate illness.

It is normally the employee with the legitimate illness who is not used to getting a paycheck deducted with sick time.  Often times those employees live on budgets, so the stress of not missing pay from the check has the potential to make things worse.  So the reaction is for the employee with the legitimate illness to force themselves to work.  The employee is already at risk because of the depeleted immune system, but with physical exertion and exhaustion, the chances of recovery or worse, the illness becoming more dangerous,  has to be recognized at least as unfair. 

And if there is no concern for the legitimately ill employee, there should be even more disappointment in the concern for the other workers who are not contaminated with whatever bug the sick employee is dealing with.  So while the media spreads global fear of an Armageddon-like epidimic of flu, employers with their absentee policies actually contribute to the spreading of illnesses like the flu, strep throat, and other contagious diseases. 

If you are watching the bouncing ball, one sick person is bad, but risking several sick people is okay.  The cost of lost labor for one employee is bad, several employees out is very bad from a lost productivity point of view.  But that is exactly what employers create.

There is one final critical thing to be considered.  And it something no one, sick employee or greedy employer does not even consider, because it is something that neither can see.  There are people in the world, and especially in the work force who have what is called a compromised immune system.  A compromised immune system can be depressed supressed, compromised, and a few other descript conditions.  And unless one of those less unfortunate patients speak up, there is no way to know.

I am one of those who have a compromised immune systems.  I was not born this way, I was made that way.As part of the staging process of my Hodgkin’s Disease and determining the need for chemotherapy or radiation or both, a procedure called a laparotomy was performed.  One of the things done during this surgery was removal of the spleen to see if the organ is riddled with Hodgkin’s.  It was considered “no big deal” as I “didn’t really need a spleen” as others do without.  It was actually quite commone, not just for staging cancer, but in many forms of trauma, the spleen was removed.  This creates a condition for a patient being declared “asplenic”.

In recent times, it has been realized just how important the spleen is to the human being.  The spleen kickstarts your immune system and keeps it fighting whatever is fighting against your body.  For example, have a cold?  Your spleen helps to fight it.  Scrape and cut your knee?  The spleen helps to fight infection.  Having a heart attack?  The spleen helps to recover.  Simply put, no spleen, the chances of your fighting an infection or surviving are made that more difficult.  To help give me a chance, over the last several years, I had been given multiple pneumovax and menningicoccal vaccines.  My body does not respond in antibody production like it needs to which means that if you have a cold, I have an even bigger chance of coming down with it.  In spite of my children being innoculated for chicken pox, if there is a child at school who was not vaccinated, comes down with chicken pox, my daughters could carry it home.  Strep?  Increased chance.  Twice last year (within nine months to be exact), I was taken to the emergency room to be diagnosed with two different pneumonias, one case being septic, the other double.  But both types were determined to be “Community Acquired” which means I got it from someone else.  Someone else who was sick and either came to work, came to church, or some other public passing, created a near-fatal situation for me.  No, I know it was not on purpose, because they did not know I was at an increased risk or surely they would have avoided me.

My comments are more than just pushing for hand sanitizer every two feet or training everyone to cough into their elbows.  It is about awareness and consideration.  The flu might not be fatal for the majority of people, but for some, there is an increased risk.  Unlike last year when my employer forced a swine flu absence policy, it does not show any signs of improving preventive care today.

Remember Jim Henson, creator of the muppets?  Died of complications of strep, originally thought t o be pneumonia.  He was also asplenic.  In spite of agressive treatments used on asplenic patients, the creator of Kermit the Frog passed away at the age of 53 after two cardiac arrests.

I should not have to state publicly that I do not want to die, and that I do not want to catch what someone has.  It is common sense how to prevent the spread of things like colds and flu, clean hands, and staying home when you are sick.  I only wish employers realized that people do get legitimately sick and while there are those who play the system, those who do not, should not have to pay with their lives.

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