Earlier Symptoms and Misdiagnosis, Part 2

continuation of topic from previous post

The first two symptoms were covered as I described how I was misdiagnosed as having asthma.

  • Crackling sound in the chest (a sign of fluid buildup)**, heart murmur, or other abnormal sounds
  • Shortness of breath during exercise, while lying down or having been asleep for awhile.**

My experience with some of the remaining symptoms (bold and ** are those I experienced).

  • Swelling of feet and ankles (in adults) **
  • Reduced cardiovascular capacity **.
  • Irregular or rapid pulse**
  • Chest pain or pressure (more likely when you exercise)
  •   Cough
  • Fatigue, weakness, faintness
  • Loss of appetite
  • Swollen lower legs.  Despite doing calf raises, my calves never developed any definition.  They have looked big ever since I can remember.  I figured that was just the way they were made. 

 For many years, sitting down for long periods of time often caused my legs to feel heavy and uncomfortable, despite my regular exercise.  I had visited my family doctor last year to make sure there was no circulation problem.  Apparently they were not swollen at the time or he did not pick up on it.  I am finding a new family doctor.

 Fluid retention never crossed my mind.  I did not consider that my legs were actually swollen.  My heart was (is?) not strong enough to push all  the blood up away from my lower extremities.  The diuretics Lasix  (furosemide) and spironolactone are among my medications, and I can now see the difference in how my lower legs should have looked.

  •  Reduced cardiovascular capacity.

As I have mentioned previously, I have been exercising for 5-6 days a week,  twice a day for 20-35 minutes each session, for 6 years.   Treadmill,  elliptical, bike, jumping jacks and other “boot camp” type moves, Zumba and other dance, swimming, yoga.  I had taken daily walks before that and done just enough squats and weight training to deal with my legs feeling uncomfortable from sitting down on my desk job.  I was never able to build the kind of endurance that would enable me to run for any length of time, but I had gotten to a point in the first year that I could run on a treadmill for 2 minutes at 5.5 to 6 miles per hour.  I was jogging at intervals on my walks with my two black labs.  I could take 3 flights of stairs at work and not be out of breath.

 At some point, possibly 3 years ago, I found that I could not endure running or jogging or high cardio.  On a treadmill, 4.2 mph was my normal speed at an incline of 3.  I went to my family doctor, as it did not make sense to me for my cardiovascular ability to be reduced.  I did have allergies and sinus inflammation that make it more difficult to move air through my nasal passages.  Perhaps there was now more inflammation or another polyp.  His thinking was along the same lines, so he sent me to an ENT.

 The ENT listened to my heart, as my family doctor had done, and it sounded good.  My blood pressure was good.  He concluded that I had a small nose, small nasal passages, and that I should try using Breathe Right strips.  As a last resort, if I truly wanted to, I could have a surgery that would enlarge the passages.   I tried the Breathe Right strips, and I consistently sweated them off.  Oh well, I guess I will just have to accept it.

 My cardiovascular capacity evened out for awhile. 

In early 2012, hip and knee pain led to a diagnosis of osteoarthritis in those joints.  Physical therapy, a farewell to jumping jacks and other high impact exercise, and 500 mg Naproxen relieved my pain.  I began using a stationary bike, and swimming occasionally, to include no-impact exercise in my routine.   

 In April 2013, it was determined that my right hip needed to be replaced, and I had the surgery* on July 22 of that year.  When I tried the treadmill 3 weeks later, I could only go 3.5 mph.  I thought it was due to not pushing myself as hard for awhile due to my recovery.  I did not yet have the other symptoms that led to a misdiagnosis of asthma, which I covered in my previous post.

 *Regarding hip replacement – I had an anterior incision performed by a doctor who is on the top 100 in the U.S.  His name is Dr. John Clohisy, for Washington University Physicians, St. Louis MO.  Often people have a posterior incision that requires a longer, more difficult recovery.

  •  Lastly, irregular or rapid heartbeat is something I’ve experienced for many years. I have had instances some years ago but not in the last couple years when I lied down at night and could not sleep for the awareness of my heartbeat. Anxiety from a day of work and chores at home?  Or was it the beginning of my heart condition?  I had one day at work when my heart was beating unusually quickly nearly all day.  I had read that heart palpitations were not uncommon during the approach of menopause, so I did not worry about it too much.  Now I wonder.

 I think back about all these little signs.  Is there something I could have done to push concerns with my doctor?  I don’t know.  They each came on separately over time. 

 One thing I never experienced was persistent fatigue or sleepiness.  I was accustomed to sleeping 6 hours a night, so I could rise early and get in my exercise and the dogs’ walk.  Sometime before my diagnosis, I was falling slightly short of those 6 hours due to getting to bed 10 minutes or so later than usual.  Most days I was fine.

 I do wonder about my use of 5-Hour Energy. I kept a bottle handy in case I really needed it, which recently was twice a week.  Before that, maybe once a week, if that. When I told one cardiologist that I drank a half-bottle occasionally, he frowned quite a bit and told me to never take it again. 

 In my next post I plan to share information I have gathered about sodium. 


Symptoms of Congestive Heart Failure and a Misdiagnosis Months Earlier

Note:  You may find references to heart failure or congestive heart failure in my writing.  I was scared when a nurse mentioned giving me a brochure on “congestive heart failure”, which sounded like a death sentence to me. It is actually a general term that refers to the heart’s failure to pump an adequate amount of blood.  This leads to a buildup of fluid in the lungs and surrounding body tissues.

Symptoms of Congestive Heart Failure and a Misdiagnosis Months Earlier

 There must be a good reason for the medical profession to do the tests that led to my diagnosis.  I was at the emergency room for symptoms of fluid in my lungs and in my liver.  I did have pneumonia, but other issues caused them to do further testing.  I was in the hospital for 8 nights.

The doctors and I were trying to estimate how long I have had dilated cardiomyopathy (DCM to abbreviate).  Often it starts out with no symptoms and then progresses.   Sometimes the signs start suddenly and severely.

Below is an overview of symptoms of heart failure 

I will elaborate partially on my personal experience further down and in my next post. What I experienced is marked **, and I have listed my most recent symptoms first.

  • Crackling sound in the chest (a sign of fluid buildup)**, heart murmur, or other abnormal sounds
  • Shortness of breath during exercise, while lying down or having been asleep for awhile.**
  • I’ll add, for my case, reduced cardiovascular capacity**.
  • Swelling of feet and ankles (in adults) **
  • Irregular or rapid pulse**
  • Chest pain or pressure (more likely when you exercise)
  • Cough
  • Fatigue, weakness, faintness
  • Loss of appetite

 A Misdiagnosis of Asthma (August-December 2013)

I was three weeks into my medical leave recovering from a replacement of my right hip.  I was lying on my back around 4:30 am returning to my bed from a visit to the bathroom. I could hear in my chest a sound like someone was crunching up paper.  My breathing was shallow but I was not struggling.  I propped myself up with pillows and eventually went back to sleep.  This kind of thing sporadically continued in the early morning hours.

I was not sure what wheezing sounded like, but I didn’t think it sounded like a crackle.  I did listen to the breathing sound through my mouth, and it did sound like a whistle, sort of.  I did some reading on asthma, and I was convinced that’s what I had.

I went to my family doctor on the first day I returned to work, September 3rd.  I described my recent symptoms.  He diagnosed me with asthma.  It made sense at the time.  I had allergies, perhaps being home all day I was exposed to more allergens, my son had moved back in with his cat in May, so perhaps those things had triggered full-blown asthma.

The Dulera broncho-dilator seemed to work….until mid-October after I sat by our firepit and the problem started up again with effects during the following two days.

I was put on prednisone for the next 7 days, and the breathing problems and sounds disappeared.  I did experience unusual fatigue and depression on the last day of prednisone, a Saturday.  I was then awakened in the middle of the night by the crackling and breathing difficulty again.  I tried to sleep in a recliner.  I was also coughing.  My heart was pounding so hard it felt like it would come out of my chest.  This eventually subsided.  I did not go back to sleep until late morning.

I live in a community surrounded by farmland and woodland, the combines are kicking out all kinds of allergens, people can burn leaves in my community.  At my office visit to our family doctor on Monday, we discussed how the fall would be a rough time for my “asthma”.  Let’s see how I feel after we have a good freeze and all the junk is out of the air.  This seemed reasonable.  He prescribed the generic form of oral Singulair.  I thought I needed a rescue inhaler, but he never offered it, and I didn’t ask, I don’t know.  The Singulair seemed to be helping.

Looking back, I regret that I did not take more charge of my healthcare. I received from a friend with an asthmatic husband the contact information for a pulmonologist and an allergist.  After some mild problems in early December, I kept telling myself I would contact the pulmonologist, and I never did.  Since the medications seemed to work most of the time, I guess I did not see an urgency.

My whole heart ordeal revealed that I DO NOT HAVE ASTHMA.   Yes, I am planning to get a new family doctor soon.  I can understand how asthma would be an easy diagnosis, I had no family history of heart disease, and I follow a healthy lifestyle, so a heart problem seemed like a longshot.  I think the biggest thing he missed is that the noise in my chest was a crackle – not a wheeze.

 Reading my report from the hospital again, it mentions bilateral pleural effusion, which is fluid on both lungs.  I had pneumonia only on a specific lobe of my right lung.   Wow, this was building for awhile.  Hence, the crackling.

Despite my consistent exercise, I had noticed over the last few years that my cardiovascular abilities had decreased during exercise.  I had other symptoms as well.  I will write about that in my next post.


Pneumonia and a Shocking Heart Diagnosis

On December 27th, 2013, I was diagnosed with a heart disease called dilated cardiomyopathy. 

There is no history of heart disease in my family.  I am 51 years old. I’ve had a healthy diet for most of my life.  I’ve been committed to exercise 5-6 times a week, beyond a walk, for 6 years.  I exercise for 25-35 minutes early in the morning before work, and on my work break in the afternoon I go to our onsite gym for 30 minutes to use the elliptical, or I walk outside. Even after I lost 25 pounds and am at a healthy weight, I have to do it or my body does not feel good.  I have never smoked.  I drink infrequently. 

I never imagined that I could have a heart problem. I know a healthy lifestyle does not guarantee any problems along the way, yet it was the most shocking news of my life when I was told that my heart was enlarged and weak.  Several of the medical personnel referred to it as congestive heart failure.  The official name is idiopathic dilated cardiomyopathy.  I’ll elaborate later in this post.

The Initial Path to the Diagnosis

Christmas Day was uneventful until late evening when I experienced symptoms that sent me to the emergency room. My two boys, Alex, 25, and Ross, 28, were home for most of the day.  We don’t exchange gifts.  (The weighted boxing gloves and punching bag my husband had ordered for me had not yet arrived.)  We enjoyed Italian beef sandwiches and various appetizer foods leftover from the night before, and we talked and watched TV.  It was a nice break from work schedules.

I normally would have exercised that morning on the stationary bike and done dance or aerobics moves or strength training for an hour. This day I had decided not to exercise, though I walked with my husband, Mitch, and our dogs in the morning and evening for 20 or 30 minutes.  After we returned from the evening walk in the cold weather, I was laying flat on the carpet while I talked to my parents on the phone and began moving through some floor exercises that are therapy for my right hip, which was replaced in July, and for the arthritis in my left hip and knees.  Keeping all my leg muscles strong is important and the exercises have prevented me from having hip and knee pain. 

I had started having a pain in my right shoulder blade and the top of my shoulder.  I thought I had overworked those areas during my upper body workout the day before.  I decided to take a hot bath. 

At some point at the end of my bath, I felt weak and began having trouble breathing.  I had been diagnosed with asthma in early September, but it was primarily controlled through a broncho-dilator and the generic form of Singulair.  I thought I was having an asthma attack.  Sharp pains began to affect the top of my shoulder, the shoulder blade, and now the back of my rib cage.  I was afraid that I could not get myself out of the bath, but I knew my family would not hear me with the bathroom and bedroom doors both closed and the TV on.  I got myself out of the bathtub, threw on a robe, and leaned against the sink while having trouble breathing and with my chest feeling some pressure.

I walked out to the living room and told my husband, Mitch, that I thought I needed to go to an emergency room.  By this time it was close to 10 pm.  He had to work the next day, and my son Alex was on medical leave for a sprained ankle, so Alex drove me to the hospital.  (Ross was out visiting a friend.) 

As I had dressed for the hospital, I was hyperventilating.  The pain kept on, too, and the 25-minute drive to Alton Memorial felt like an hour.  After we arrived, I was seen immediately. 

A chest X-ray revealed fluid on my lungs (pleural effusion).  Pneumonia.  I was hooked up to various machines, including an IV for antibiotics.  I was able to slow down my breathing a bit and answer some questions.  I was given a breathing treatment.  I had a mask over my mouth and nose, and I had to breathe through my mouth.  I could not breathe correctly.  The beeps and lights on the machines, and the mask, were giving me anxiety.  My  breathing was quick and shallow.  I could not take a deep breath.  After what seemed an eternity, the time was up.  Another Xray or CT was taken to look for a blood clot in my lung.  Fortunately, it was clear.  I was given something that made breathing easier and made me sleep, blissfully. 

At some point during all of that, I told Alex he could go home.

When I awoke in the ICU the next morning, Mitch was there. 

Blood had been withdrawn here and there. Strep-pneumonia was in my blood. Alex was diagnosed at the doctor with bacterial pneumonia just 5 days prior, so it made sense.  I probably caught it from him.  Later on, I thought it was strange that it came on me so suddenly.  I had not been coughing or feeling ill.   I learned that the pneumonia ultimately saved my life.  It was the effects of the pneumonia that brought me to the hospital and revealed an underlying, life-threatening heart condition.  Thank you, Lord, for the pneumonia.

During evaluations and diagnostics, it was found that my heart is enlarged and weak.  The cause was not yet known so I needed more tests.  I was scheduled to have a catheterization the next day.  A tube was run through my groin up into my heart to detect any blockage.  There was no blockage.  At the same time, they would do a transesophageal echocardiogram (TEE). 

The TEE involved spraying my throat with anaesthetics, a sedative that kept me barely awake and not remembering the actual procedure, and running a tube down my throat.  I remember the tube, and I hope to never do this procedure again.

The final heart diagnosis is dilated cardiomyopathy.  My left ventricle has more space in the chamber than it should.  The walls are stretched and thinned out.  My mitral valve is allowing some blood to go back in the left atrium (regurgitation).  The valve problem likely was caused by the stretching of the ventricular walls.

The cause of my condition is unknown.  My blood pressure has always been good and on the low side.  We don’t know when it began.  Often there are no symptoms in the beginning.  See my next post regarding symptoms.

 Ejection fraction is a measurement of how much blood the left ventricle pumps out with each contraction.  An ejection fraction (EF) of 60 percent means that 60 percent of the total amount of blood in the left ventricle is pushed out with each heartbeat.  A normal range is 55-60. 

 A measurement under 40 may be evidence of heart failure or cardiomyopathy. 

My EF was 15 percent early in the hospital stay.  (I don’t know what it is as of today.  I will find out on 2/14 when I have another echocardiogram.  Barnes Hospital can do it without sticking a tube down my esophagus.)


Additional Procedures and a Second Hospital

The pain in my shoulder and shoulder blade made sense with the fluid in my right lung.  It did not explain the pain in my rib cage that was now present in the front as well as the back.  Tests revealed fluid around my liver.  There was a concern about my gall bladder.  A diagnostic showed that my gall bladder and liver functions were normal.   The fluid was a byproduct of my weak heart. 

 All this time, my blood pressure has been low. 

 About a pint of infected fluid was removed from my right lung through a needle guided by CT scan. The fluid had formed pockets, though, and they could not remove all of it.

A drainage tube was recommended to remove the remaining fluid.  Alton did not have the specialists to perform the procedure to install the tube.  On New Year’s Day I was transported to Barnes-Jewish Hospital in St. Louis.  After I arrived, their team did not believe a drainage tube was the next step.  The pneumonia was nearly gone.  The fluid was there due to my weak heart, and water pills (diuretics) would remove it.  We needed to focus on how to proceed with my heart issue.

The Treatment Plan and Going Home

 Both the cardiologist working with Alton and the one working with Barnes recommended medications to strengthen my heart.  We will try that first for awhile and see if it works.  I was on these medications while at the hospitals.

I was released on January 2, 2014, the 9th day from the first day I went to the hospital.

I was sent home with a Zoll LifeVest, a wearable defibrillator.  It is slightly larger than a bra, with electrodes and sensors that connect to a defibrillator that I must carry on a strap or hook to a belt.  I must wear it for 12 weeks.

I have been on medical leave from my office job and hope to return to work on March 3rd

 ***In my next post, I will share symptoms of the heart problem that I experienced much earlier I (months and years ago), and how I was misdiagnosed as having asthma.