Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

How Far South Do I Need To Go?


The east coast just got hit with a major storm, on top of dealing with already severe cold temperatures.  I reside in south Florida, and this was our actual reading at 7am yesterday, and again, this morning.

There are plenty of jokes about Floridians and Californians when we are forced to deal with the cold.  And believe me, I get the jokes.  I used to make them.  But having lived in Florida for a few years now, I now understand just how rough the cooler temperatures are on warmer climates (we are nowhere near dealing with subzero wind chills like up north).  My body has been acclimated to gradual dropping temperatures, but only to a certain degree.

My issue is more than just keeping warm though.

Yep.  Not normal Floridian attire.  But for me, it is necessary.

I have pulmonary issues related to treatments that I received for Hodgkin’s Lymphoma nearly three decades ago.  The progressive damage includes radiation fibrosis as well as restrictive lung disease (I only have 75% use of my lungs).  Extreme weather conditions have a drastic impact on my lungs so for me, it is about prevention first, treatment if necessary.  But here is the catch.  There is no treatment.

As you can see, I am wearing a neck scarf, typically I used to wear when I used to ski.  I will actually wear this once the temperature drops into the lower 50’s.  But I can wear it in the 60’s if wind is a factor.  Here is the issue.  The colder air, or forced air, in my lungs creates a situation very similar to asthma.  The only difference is that an inhaler does not provide any relief.  And if I do nothing to reverse what is happening, my lungs actually feel as if they are rocks, making it more difficult to breath.  And if I do nothing to reverse what is happening, the situation gets made worse as I usually head towards a full blown panic attack.  And it only gets worse from there.

It took a while to figure this issues out.  And only after being seen at a survivorship clinic at Memorial Sloan Kettering Cancer Center did I learn what I was dealing with.

More than 20 years ago, I met another fellow Hodgkin’s survivor.  She was treated approximately the same time period, and similar modes of treatment.  She had these lungs issues.  I recalled how hard she struggled with her lungs, and often how painful it was.  Often relief was slow and heartbreaking.

Between my friend and my medical team at MSKCC, I learned that I had a similar condition.  And since treatment did not provide any kind of relief, the issue became more about prevention.

Before I retired several years ago because of my health, I was constantly seen dressed like the picture above by my co-workers once the temperatures got cooler.  My peers often made fun of me, because just a few years earlier, I was known to actually wear shorts through the month of January.  And now, if the temperature got into the 50 degree range, I wore a ski mask.

Well, here is what I have to do, if I do not wear the mask.  If my lungs are restricting due to the temperatures, I need to get indoors as soon as possible, to a climate controlled environment before I develop the panic attack that is sure to come.  Then, I just sit down, and wait.  I try to focus on my breathing, waiting for my lungs to warm up, trying to expand my rib cage.  This process can take anywhere between a half an hour to 45 minutes depending on how bad the situation got.

This was not a situation my employer was happy with, having to wait for me to begin my work day.

So, the ski mask actually reduces dramatically, the amount of cold air being breathed into my lungs, and reduces any wind forcing the air into my lungs.

This issue also is affected by heat and humidity, but right now, I would just be happy to have our temps back up in the 60’s or 70’s.

Congress – Renew CHIP – NOW!!!!


Late night television host Jimmy Kimmel returned to the airways on Monday night, following an absence last week.  He was with his infant son, who was recovering from yet another heart surgery (and has many more surgeries to go).  You may remember this situation, because many months ago, when our government was rushing to repeal the Affordable Care Act, which would have left millions uninsured, especially those with pre-existing conditions, which now Kimmel’s son’s situation would be in that grouping.

Kimmel had challenged Senator Bill Cassidy, and originally Cassidy seemed to have genuine concern and care for the millions of us in the pre-existing category.  Cassidy stated that any effort to repeal and replace the ACA, had to pass “the Kimmel test”, which Cassidy nicknamed after watching Kimmel’s television show when the host told the story about his son.  But after Cassidy wrote the bill, along with Senator Lindsey Graham, nothing even remotely represented what Cassidy claimed his fight would accomplish.  In fact, quite the opposite.  And Kimmel called him out for it.  Long story short, the repeal and replace bill failed, repeatedly.

But on Monday night, Kimmel again brought health care to the spotlight.  Again, Kimmel does not necessarily have a dog in this fight, because he can afford to care for his son.  The fact is, there are millions who cannot, 9 million in fact.  And for this, decades ago, through two other presidential administrations, a program called CHIP – Childrens Health Insurance Program – was created to make sure that children whose families who made too much money to qualify for Medicaid but could not afford health insurance, would be covered.  This program was supported by both Republicans and Democrats.  The program is especially vital to children battling such serious illnesses as cancer, heart disease, diabetes, and more.

What caught the ire of Kimmel, our current government allowed the program to expire.  Every time the program came up for renewal, it was done.  Except this time.  Now, as both sides jockey for position whether it be for health care, or tax reform, and neither side is doing anything to restore this funding.  Individual states are doing what they can, but even they are now running out of funds to keep this running.  Simply put, our government is putting the health care of our children in a hostage situation.

Kimmel’s point was clear.  He urged the millions who watch his show to make phone calls to our representatives to get them to renew CHIP NOW!!

Of course, there will be those who protest that Kimmel is out of line, or just trying to capitalize on his celebrity status as a liberal.  What these people who protest this are really upset about is that Kimmel has a venue to air this embarrassment of our government.

Seriously, my blog only reaches so many people.  But Kimmel reaches millions.  We both have small children.  We are parents just like millions across the country.  And we know how other people struggle to take care of their children.  So yes, Kimmel does have a platform, and I hope he continues to use it.

And as a heart patient myself, I have such empathy for Kimmel’s son.  I at least knew what was happening to me and being done to me.  He has a great smile, but I am sure he had to be scared.

Chilly Wake Up Call


As the Winter months advance, so do the colder temperatures for California, Texas, and Florida.  And with that colder weather, come the jokes at the expense of those residents of the states mentioned above.  Before I became a resident of Florida,  I could usually be heard reminding our southern citizens what cold really was, especially when it was in the teens or 20’s with wind chills making the temperature feel as if it were subzero.  So please, do not complain about temperatures in the 40’s and 50’s.

Like I said, that changed when I moved to Florida several years ago.  Over the years, my body has actually acclimated to the southern climates.  Just like our bodies adjusted between the seasons up north, the same thing happens in the south.  However, because higher temperatures make up the majority of the year, our bodies get used to temperatures being warm.

But my body has a much different issue than just getting used to the cold.

When I w0ke up and went outside, I was reminded very quickly just how much a difference the warmer climate has made a difference to me during the winter months.

Though I am happy to be here nearly 28 years later after battling Hodgkin’s Lymphoma, it has come at a price to my body from late side effects from the treatments used to save my life.  My lungs are one of those issues.  Damaged from radiation and the chemotherapy drug, Bleomyacin, I have a couple of issues that I live with, Restrictive Lung Disease (my inability to expand my lungs more than 76%, especially with my lower left lobe “dead”) and Radiation Fibrosis Syndrome.  In recent years, I have also had to deal with multiple onsets of septic pneumonia.

The more permanent and progressive issue I deal with, is extreme weather conditions.  Extreme heat, humidity, wind, and extreme cold cause what I best can describe as an “asthma”-like condition, with the exception that inhalers provide no relief.  When exposed for too long of a period to the conditions, I must return to a normal air temp and climate and simply wait out the event until the pain subsides and my normal breathing is restored.  The time varies on how quickly this happens, but if not controlled early enough, my condition advances to a full blown panic attack.

For the most part, I have a grip on this concern.  When temps get too low, I have a neck “scarf” that I wear which covers my mouth and nose, reducing the amount of direct cold air that I inhale.  Back where I used to live, co-workers would actually make fun of me for wearing the scarf in temps as high as 50 degrees, but the alternative to not wearing it helped me to let their comments fall on deaf ears.

Of course, another issue I have with the cold, is a result of open heart surgery, again, damage from long term effects from radiation and chemotherapy on my cardiac system.  My temperature tolerance dropped approximately ten degrees, and for me, that is a big deal.  I used to be a skier.  I used to wear shorts in 30 degree weather including snow.  But the other night, my body let me know, it was time to put away the flip flops and get some socks on.

Okay, so I deserve to be made fun of just a bit, when it comes to dealing with “cold” temperatures.  I also think I deserve some slack.  My current health issues were not caused by my own doing.

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