And Breathe

The doctor started asking questions and my chest began to feel like bands were tightening around it.

Shortness of breath?  When did that start? Upon exertion or at rest?  Swelling in your legs? Any falls? How are you sleeping? How is your memory? With orders for a chest x-ray, and blood work, as well as a referral to cardiology we left the doctor’s office.

We have been to doctors several times over the last few years complaining about tiredness, memory issues, not wanting to do anything.  There where some heart issues.  A pacemaker and a ventricular ablation seemed to provide some improvement, for a while.

We started talking about other reasons for the lack of interest in doing things, and the persistent tiredness.  Depression? Drinking? Marital issues?  I knew something was wrong, and I wanted to fix it.

We got the chest x-ray right away, followed shortly by a call from the doctor with a referral to a lung doctor due to fibrosis.  Wait.  What?  That is when I did the stupidest thing.  I went on the internet.  Now, I was the one that couldn’t breathe.

Fibrosis is bad.  Really bad.  You are going to die bad.  And not die in a long time in the future, but in the foreseeable future.  As in put your affairs in order now, because, you know, you are going to die.  I did not share the news.  I figured if he was curious, he would look it up.

All our plans seemed to be going up in smoke.  Our travel plans, including our 50th Anniversary trip we have begun planning for in three years.  Could we go now instead of then?  Could we go at all.  What would we do over the next few relatively healthy years.  And then, the hard question.  How would we handle the bad years?

A few tests later and the heart is proclaimed good.  Good for now, because fibrosis is hard on the heart as it has to work harder and harder to get the  blood into the lungs for oxygenation.  Did I mention I’d been spending time with the internet.  I followed several lines in inquiry.

The lung doctor got us in quickly.  The doctor said, “Your diagnosis is Idiopathic Pulmonary Fibrosis.  Stay off the internet.”  To late, but I didn’t tell him that.  I’ve already seen x-rays of the progression of IPF, and heard a recording of what the doctor hears as he listens to the chest.  I’ve heard all the bad news, I hope.  He ordered tests and then we had to wait.

There is good news.  Three years ago, in 2015, two drugs were approved that are effective in slowing down IPF.  No, it is not a cure, but it buys time.  If I add the years the medication can hopefully add to life expectancy, to the highest number of the expected range of life prior to the medicine, add in a few years for luck, and if we caught the condition early, then life expectancy it isn’t so bad.

The only cure is a lung transplant, if you are healthy enough.

Yesterday the tests were all in, and we were back in the doctor’s office.  The diagnosis was revised.  He doesn’t have IPF, but COPD or Emphysema.  There are a lot more treatment options for COPD.  You can live a good while with COPD.  His lung function is relatively good, but the oxygen saturation in the blood tend toward low.  Oxygen is now his new best friend.

There are still some unanswered questions.  There will be more tests.  But for the first time in weeks, I can breathe.

Why I Love the Pacemaker

I was looking for free open stock images this morning, and fell in love with a small collection of photos by Nic at Little Visuals.  This site greets you with a message from the photographers family asking for donations to the Hand on Heart Charity in the United Kingdom, whose mission is to place defibrillators in schools.  Nic Jackson died of something called S.A.D.S., Sudden Adult Death Syndrome.   In the United States we know S.A.D.S. better as Sudden Cardiac Death.  The heart goes into arrhythmia, stops pumping blood, and the person can die.  This is an electrical problem of the heart.  It is not a heart attack.  The heart just stops pumping blood.

The first person I knew with the condition was a young father who died suddenly at the age of 34.  He was a fit, active adult, as were we.  His death was a shock to all, as are the deaths of young athletes and other healthy people of all ages that this condition afflicts.

Dizziness is one of the primary symptoms, you may or may not notice a rapid heart beat, and the heart stops.

A few years ago I realized something was wrong with Hubby.  He was lacking in energy, He had no interest in doing anything.  He just wanted to sit in the evening with his favorite drink, a dirty martini, and munch on his olives in peace.  I was distraught.  I sent Hubby to doctors, who listened to his heart, checked him out, asked about his drinking and thinking he might be depressed, sent him home with a prescription.  A the choice between his martini and his medication caused him to stop the medication.   Hubby didn’t think depression was his problem anyway.

Things did not improve at home.  Hubby passed out one night, while I was taking care of my parents and not at home, cleaned up the blood and went back to bed.  In the morning he got 9 stitches.  A stress test showed nothing wrong.  A few months later, alone again hubby passed out in a doorway, leaving his body badly bruised.  This time the Doctor did a Cat Scan of his heart and head.  Nothing.

At this point I was livid.  Something was wrong!  Was he drinking more than I thought?  Several family members had all commented on and expressed concern over Hubby’s drinking and behavior.  Talking to our doctor, I had a fit!  Why hadn’t the doctor suggested my husband stop drinking?  I wasn’t sure what the problem was.  It could have been his drinking, or his drinking could have masked the real problem.   Two years we had lived with whatever this was, and I felt it was getting worse.

One day Hubby was in a meeting, and a nurse noticed him repeatedly taking deep breaths.  She grabbed his wrist and realized his heart rate was off.  A quick trip to his heart specialist got him hooked up to a heart monitor of the next 48 hours. Hubby’s heart stopped for a few seconds more than once during that time, which resulted into a referral to an electro-cardiologist. The electo-cardiologist’s initial thought was to adjust some medications, because hubby said he experienced no dizziness.  Instead, Hubby wore a heart monitor for a month.

Hubby’s heart stopped several significant times during that month, without incident.  Hubby got a pacemaker.  Suddenly Hubby had a little energy.  It turns out those falls he took, may have restarted his heart.  He was a very lucky man.  The morning after the pacemaker installation a check and reported that it had fired a quarter to a third of the time.

Since Hubby got his pacemaker, he became the man he once was, and instead of only wanting to sit with his martini and be left alone, he has resumed interests and activities he has always enjoyed.  Now that Hubby’s heart is keeping his blood moving, he is a happy man.

So on this Wonderful Wednesday, I am thankful for Hubby’s good health, and I share his story in the hope that you are a little better informed of this killer.

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