Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

When Extremes Affect Health


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This was the message that I received on my cell phone this morning from my mother in Pennsylvania.  I currently live more than a thousand miles south, where it too gets cold, but not to this extreme.  It does not make it feel any better to me having acclimated to my new climate temperatures, it is cold.  But I do know what 0 degrees feels like.

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There was a time that I loved the cold weather, tons of snow, which for some reason traditionally fall around this time of year, nearly every year.  At one time, I was a great skier, unable to wait for the next season to roll around.  Of course, there were the hours upon hours spent sledding, and yes, playing football with the neighborhood kids in two feet of snow.

And of course, there is nothing as beautiful in both sound and beauty as fresh falling snow.

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I had always dreamed of living somewhere, that snow was a dominant weather characteristic because I was always more comfortable with cold, being able to keep warm, as opposed to being in the heat, trying to keep cool.

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I could enjoy the warmer weather, whether it would be in the mountains, or maybe a brief stay on the beach, but it was never an environment that I thought I could ever stay in.

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But things changed in a big way following my open heart surgery in 2008.  Just like my cardiac symptoms, I had pulmonary issues as well, for a long time, I just simply ignored them.  But when it was discovered that my cancer treatments for Hodgkin’s Lymphoma had caused a life threatening situation with my heart, it was not soon after that more testing would reveal the many other late developing side effects that had become a part of my life.  I have written about my one of my cardiac issues in prior posts.  Today I am going to talk about pulmonary.

I was diagnosed with Restrictive Lung Disease, which for easiest understanding, it means exactly what it spells.  The residuals of my treatments have left me with my lungs being only at 75% as confirmed with extensive pulmonary function testing performed by one of the top hospitals in the country, Memorial Sloan Kettering Cancer Center.  My results are not posted below, but the pictures show what the testing results would look like.

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Until my cardiac episode had been diagnosed and treated, I was totally ignorant of what was happening to my body since my days with treatments.  I was no longer being followed up by doctors once I hit my five year mark.  But looking back, symptoms existed long before my surgery.

One of the most obvious symptoms I had was dyspnea, difficulty breathing or what some would consider shortness of breath (also a cardiac symptom by the way).  I often had what was a dry cough, which occasionally resulted in blood with anything I coughed up.  This was often treated as an infection prior to knowing I had RLD.  Most often times I felt as if it could possibly be compared to having an asthma attack, only I  had never had asthma before, and inhalers were used initially to treat me, but of course provided no relief.

There are two things that cause my RLD to act up to levels where it can actually cause a panic attack with me.  It is one thing to have to try and catch your breath, but when you cannot, and you feel your heart ready to jump out of your chest, your body and mind starts to react in ways that you cannot control.  But exercise and extreme weather are both known triggers to episodes of my lung problems.

I avoid all strenuous exercise because this is a guarantee to trigger an episode.  Exercise for me is confined to walking and that is it.  And I must walk on a flat surface.  Walking up a flight of stairs will leave me gasping for air.  I cannot even walk with a fast pace without becoming short of breath.

But extreme weather is my main culprit.  I spent a lot of time walking from the parking garage to the building I worked in which meant I was often dealing with high heat and humidity during the summer months, and brutal cold and winds during the winter.  So, as you can see, the only time I would be okay, is basically if I stayed indoors, where the climate was controlled constantly.  But that was not realistic.

A typical day for me, regardless of winter or summer would go as follows.  I would get into my car, drive to work and park in the garage.  I would walk to my building which took about five minutes.  But by the time I would get there, in most cases, my lungs would have shut down on me.  Because no medication would work, I would spend the next half hour, breathing the indoor climate controlled air to reverse what my lungs had been treated to outdoors.  On most occasions, this would work, but on a rare occurrence, the episode could last for hours.  The last severe episode I had resulted in me being transported to the emergency room for a cardiac episode.

So, in the extreme heat and humidity, I would spend nearly all of my time indoors, in air conditioning.  There was no relief for me outside.  The sad thing was that I owned an inground swimming pool that I could never enjoy during heat waves, because as long as I was breathing the hot and humid air, it was getting into my lungs.

In the winter, and sometimes in the cooler autumn weather, I was often seen wearing a scarf around my nose and mouth to cut down on the cooler air entering my lungs.  Whereas with the heat and humidity causing it to be difficult to breath, with the cold and wind also came added pain, extreme pain.  I often received odd looks from passersby seeing me wearing a scarf or turtle neck covering my mouth and nose once the temperatures got into the lower 50 degree range.  But it reduced the amount of air I was exposed to until I could get into the building, and yes, try to settle my lungs down.  So here is someone who loves snow, loves to ski, with two beautiful little girls who love to spend time in the snow… and now tries to avoid it.

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My heart goes out to everyone up north right now, dealing with the extreme cold temperatures, and ridiculous amounts of snow.  My daughters enjoy showing me pictures of the snow what used to be our yard.  And just as when I was a child, my daughters definitely enjoy the snow.

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But the truth be told at this point, the only way that I can enjoy that weather would be to become a window-licker, simply looking at the beautiful scenery from the inside of a home.  I used to love the outdoor silence that came with each snowfall.  I could always tell when snow was coming because one of the few things that Pollo, my golden retriever could enjoy, would stick his muzzle in the air, and actually be able to “smell” snow coming.

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Which makes it even more odd that I could actually survive in the climate that I currently live in now.  I live in the deep south, where heat and humidity are more than common.  But I passed the climate test with my lungs this summer keeping any discomfort to a minimum because I kept the exposure to a minimum without completely isolating myself.  I spend the majority of my time indoors, with my outdoor exposure limited while not being restricted.  I avoid the hottest times of the days, and am always able to get inside to air conditioning if I feel a pulmonary episode coming on.  But because the exposure in length of time is more controlled, so is the episode.

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And there are other factors that can aggravate my RLD (stress is a major factor discussed in other posts), and sometimes it is a combination of several.  But doing whatever I must, to keep these factors from wreaking havoc on my life, must be done.  And so far it has been working for me.

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And I will have more memories with my daughters in the white of winter during at least one of our visits with each other every year (I will be watching from the lodge), while the rest will be with me here in my southern home.

The Love Of A Sister


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Alyssa Scheidemann is an author living in Florida.  She writes on various websites and has two published books, one a children’s book, and the other a book of poems (www.alyssascheidemann.com).

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Recently, Alyssa had been asked to write an article as an alumni of her college, Florida Gulf Coast University magazine, Pinnacle.

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You see, her brother Michael, was also a student at FGCU.  I wrote a couple of posts about Michael recently on “Paul’s Heart” (see “Meet Michael”).  Alyssa’s article in Pinnacle has just been released, and so I would like to share it with you.  Below, is the entire article.

Michael Scheidemann inspired family, friends

Scholarship in his memory will do the same for others.
Alyssa Scheidemann with her brother Michael
Michael Scheidemann was a bright, loving person with a heart of gold and wisdom far beyond his years. Born with a visual impairment, he compensated with a keen sense of hearing and an amazing memory.

His life ended Jan. 6, 2014. He was 24.

My brother’s memory lives on, however, in the hearts of his family and friends and through the Michael E. Scheidemann Inspirational Scholarship Fund for Florida Gulf Coast University, established by my parents and me to help others with physical disabilities pursue their education.

As his sister – we were less than a year apart and the best of friends – and a fellow Eagle, I’d like to share with you what made my brother special.

Michael’s favorite word was “Integrity” – being honest and having strong moral principles. He was assigned the word in an elementary school show. Afterwards, he put up the sign over his bed because he believed in it so much.

He was also the family comedian. He could always make us laugh.

Mike worried about other family members, especially when we were sick or hurt. When our mother, Josephine, had a backache, he brought her a back massager. When I was in middle school, I fractured my hip when I slipped and fell on black ice as I ran to catch the school bus. Mike helped carry me home. Later, as I struggled with crutches to get around, he helped me figure out an efficient way to go up and down the stairs in our New Jersey home.

Despite his visual limitations, he loved to serve as videographer in our high school TV production class and, once in the studio, enjoyed being the director. He challenged himself in all of his academics and graduated with honors with a GPA of more than 4.0 from Barron Collier High School in Naples.

Mike loved FGCU. My mom and I drove him to campus for classes. We would all get together for lunch at Gulf Coast Town Center when our schedules allowed it. Michael and I also attended FGCU concerts together. Those were times we will always hold dear.

My father, Ernest Scheidemann, cherishes the overnight camping trips he and Mike took to the Delaware Water Gap where they would fish, sit by a campfire and hike in the mountains. What dad misses most, though, are the powerful hugs Mike liberally dispensed.

If anyone needed help, Mike was ready to step up. He organized our home offices and garages and was just as happy to help people he didn’t know. Two years ago, he worked as an intern at the Lighthouse of Collier, Inc., a nonprofit organization for people with vision loss. He taught others who had vision issues how to use computers.

Michael became sick in December 2012. Eventually the doctors figured out it was Hodgkin’s lymphoma, a cancer of the lymph nodes. Research indicated that treatment for this form of cancer had a high success rate, particularly for someone as young as he was. Michael remained tough, brave, and focused through it all, including his chemotherapy. Even before his final treatment, he declared himself a survivor. After six months of treatment, he was declared in remission. It was a happy day.

My brother taught me – and so many others – to live life to the fullest, with no regrets. A positive outlook and your best effort are what are required to face challenges and inspire others.

About a month after being declared in remission, Mike began experiencing heart complications caused by the treatment. He continued to be strong and brave, assuring the rest of us that this was just another obstacle he would overcome. But it was not to be. After fighting so hard for more than a year, he passed on that January.

Michael was a senior at the time. On May 10, I proudly accepted his bachelor’s degree in political science posthumously on his behalf at a beautiful ceremony.

It is my family’s hope that the Michael E. Scheidemann Inspirational Scholarship Fund will allow many more promising students to experience the joy of learning as Michael did and, in that way, keep Michael’s memory alive.

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Valentine’s Day Is What You Make It


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Way back in elementary school, we were exposed for the first time, to the lack of effort and commitment to celebrating Valentine’s Day.  Of course, for many, this was also the first exposure to rejection.  For me, our art class time was dedicated every year to making homemade Valentine’s cards to be distributed to the “class” mailbox that had been created in our classroom for just this occasion.  Other years, we got even craftier, creating our own Valentine Mail Box out of a shoe box so that our classmates could watch each other distribute their cards to everyone, well almost everyone.  Needless to say, I did not care about Valentine’s Day in elementary school.

In my later school years, I have to admit, Valentine’s Day did mean a little bit more, as actual interacting with someone meant developing feelings, so there was this “feeling of love” that could be associated with celebrating Valentine’s Day.  For me this carried into adulthood.

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I do consider myself to be a bit of a romantic.  And I can admit that there are at least two that will disagree with that statement.  But if they dug deep down into memories through the relationships, they will find that at least for part of the relationships, there was romance.

Over time, I can admit that I have become a bit of a cynic, that Valentine’s Day has become nothing more than an overcommercialized event created by Hallmark.  My attitude has always been that to celebrate love, you should be in love.  And if you are in love, then it should be celebrated every day, not just on February 14th, so why single out a particular day?  Most people will celebrate an anniversary of their relationship whether it be by weeks, months, or years.  So again, why create another day, other than to profit off the smitten?

It is this cynicism that has provided countless television episodes dedicated to the simplicity that a lot of men have towards Cupid’s holiday.

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All that is often expected, and I am emphasizing expected, is that perhaps flowers and candy are remembered, maybe a romantic dinner, and of course… wink, wink… some romance.

But as I said, I believe myself to be a romantic.  I have never had any difficulty coming up with ways to woo anyone special in my life.  Three marriage proposals (only resulting in two marriages) all were orchestrated romantically from the actual act of asking the father to marry his daughter (even in her middle age I did it) to dressing up as a Disney character delivering balloons with one balloon asking to marry me (she had no idea I was in the costume).

Last Valentine’s Day was a day that I would rather forget, and not because of being in the process of my second divorce, but it was around that time that we discovered that my father’s cancer had become terminal, and I would spend the next many months by his side, acting as his medical proxy.

So following my father’s passing last May, and with the process of my divorce still continuing, and missing my children, I have not felt like celebrating holidays in the traditional sense.  Which kind of makes this year’s Valentine’s Day have a special meaning to me once again.

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Josephine and I have gone through a lot of tragedy and stress over the past year.  I lost both my best friend of 14 years in my Golden Retriever and my father who was not just a parent, but a friend and confidante.  Josephine had just lost her son, who successfully completed his treatments for the same cancer I once dealt with, only to pass away from complications of a side effect from one of the drugs used to put him into remission.  Needless to say, neither of us have really put any heart into celebrating anything.

But that is not to say that we did not recognize the holidays.  Because of other issues, celebrations have been kept quite humble.  Christmas Day and New Year’s Eve were not about gifts and late night partying, it was about spending time together, not just ourselves, but with others who were spending holidays alone, or also were looking for other ways to spend the holiday.

Valentine’s Day will once again be recognized by me after a one-year hiatus.  But unfortunately for Hallmark stockholders, it will not be their benefit.  No, this year, Valentine’s Day is all about spending time with someone who wants to spend time with me, and me with her.  We like each others company.  And we both comfort each other in dealing with our losses, and other pains that we are dealing with emotionally.  It is because we both know that things will get better for both of us, that this holiday will probably be one of my most memorable Valentine’s Days because it is truly about love and caring for those, not just in their happiest and most romantic of times, but even in the darkest days of struggles.

 

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