“Road Bumps” aka “I have what?!” aka “How I spent my summer”

“Road Bumps” happen in the course of life.  You will be screaming along, enjoying life and SCREECH!  You have to slow down or stop to maneuver the “road bump.”

Our “road bump” started in the Bahamas in June, 2013.  I started to have chest pain (like someone was squeezing my heart) and feeling woozy.  It was pretty hot out, so we thought I might just be reacting to the heat and humidity.  We went into the Marsh Harbour Marina for a few days of R&R and AC.  I felt better, not 100% and the pain wasn’t gone, but better.  Good enough to get through the regatta and sail home.

I underwent tests on our return to Florida; they included a stress test, echocardiogram, and heart catheterization procedure.  My arteries were fine (good news!) but I had a “weak heart.”  I remember laying on the table after the procedure and my local cardiologist (let’s call him Dr. CardioLocal) telling me “you have a weak heart… if you drink alcohol, you will need to stop.”  Huh!?  Yep, alcohol will weaken an already weak heart.  I told him “If you want to see a grown man start laughing out loud, go tell my husband.  George will be so happy to have extra storage room on the boat since I won’t need to store wine anymore.”  George’s reaction?  Exactly what I predicated!   He laughed and made a comment about having more storage on the boat.

In our follow up visit with Dr. CardioLocal, he said my diagnosis was Idiopathic (meaning they don’t know what caused it) Dilated Cardiomyopathy.  Dr. CardioLocal gave me medication (Beta-Blocker and Ace Inhibitor) and said come back in six months.  He said statistically 25% get better, 50% stay the same and 25% get worse; go live your life as best you can.

Of course I got on the internet as soon as I got home to research the diagnosis.  We were very surprised to learn that at 53 years old, I had a progressive heart disease that is the leading cause of the need for a heart transplant and that some people die of sudden death because of the disease!   They don’t investigate to determine the cause because apparently the cause doesn’t change the treatment. The causes can include hereditary (not in my case probably), alcoholism or drug abuse (love my wine, but I am not an alcoholic) or a virus.  I did have the virus in December 2012, perhaps that was the culprit?

I was a dutiful patient, taking the meds, and living a pristine lifestyle.  It is easy to lead a pristine lifestyle when you are dizzy, feel like crap, and are tired all the time.  My hair was falling out in clumps, my skin was so dry it hurt and I was so cold I was wearing sweats on the boat in Florida in summer.  All, I believe, to be side effects of medicine which caused my blood pressure to go so low.

It was a difficult time for George and me.  I was mostly in bed, while he hovered over me and took care of me.  If I ever say I am really mad at my husband, just remind me of how he took such good care of me!

We talked about what this meant to our lifestyle… would we be able to continue to live on the boat and cruise?  Did we have to sell the boat and move back to the condo?  Did we really plan our cruising retirement for 12 years, only to have 4 months of cruising in the Bahamas?  Would my disease progressively get worse?

After ~six weeks Dr. CardioLocal finally took me off all meds because I just couldn’t tolerate them.  The medications drove my blood pressure way to low (79/59 low!)  Dr. CardioLocal said come back to see him at my already scheduled follow-up appointment (in 4 ½ months.)  What!?  I took that to mean they didn’t know what to do with me and it was time to find a new Cardiologist.

It took about a week for the medications to work their way out of my system… during that time, the dizziness was worse!  I spent a few more days in bed then started to finally feel better.  After about a week and a half I felt great!  The chest pains had stopped after I had started the medication.   No more symptoms!

At my Father’s prompting (he is a smart man) I went to Mayo Clinic for a second opinion.  George and I were on pins and needles as the Cardiologist (let’s call him Dr. CardioMayo) reviewed the test results from Dr. CardioLocal.  After a few minutes Dr. CardioMayo said “based on the test results that I see here I cannot give you the diagnosis of Cardiomyopathy.”  You could have knocked us over with a feather!  We reviewed the details with him:

  • Echocardiogram stated Ejection Fraction 60% (normal) – no one had told me the results of this test before this visit
  • Stress Test – “negative for ischemia” – what?!  My Primary doctor (let’s call him Dr. Primary) said it was “positive for ischemia”?
  • Hearth Catheritization stated Ejection Fraction 45-50% – Dr. CardioMayo explained that while this is lower than normal, the Echocardiogram is considered to be more accurate because your heart is in a stressful environment during a Heart Cath procedure

Dr. CardioMayo offered to redo the tests and look into it further, but because I was feeling great, George and I decided not to redo the tests.

We headed back to the hotel for breakfast and I celebrated with a glass of champagne!

So what does this really mean?  Am I fine?  What was wrong with me?  Should I go to my follow-up with Dr. CardioLocal in February?  Did Dr. Primary make a mistake when reading the results of the stress test?  If so, should I keep him as my Primary Dr.?

I have been with my Dr. Primary for many years and like and respect him.  I decided to make an appointment with my Dr. Primary and review the events with him and see if he could make any sense out of what happened.

I met with my Dr. Primary and we reviewed the results from the stress test and it was indeed “strongly suggestive of ischemia”… with the caveat that “due to a mitral valve issue I have had for years, false positives could be occurring.”  Apparently Dr. CardioMayo was reading an old stress test report from 2006!

Dr. Primary told me that based on the fact that I was feeling fine, he recommended that I not do anything.  He said it could have been a virus that my body was able to fight off over time.  But that I appeared to be fine at this time.

Ok, so, in a two month period of time I went from chest pain, to dire diagnosis, to fine!  I’ll take it!  I will take it as a blessing and move on with my life.  But I what did I learn from this experience?  I learned a lot!

I learned you must be your own health advocate, and if you are unable to be, ask someone with your best interest in mind to do it for you.

  • Have a good relationship with your Doctor – When Dr. CardioLocal said “take these medications and come back in six months” that should have been a red flag for me.  I was put on serious medications, I should have had a follow-up appointment with Dr. CardioLocal within 3 months or less.  Also when I started asking questions, after a few, he told me “too much information can be a bad thing…” another red flag!
  • See all of your test results for yourself – I should have had Dr. Primary & Dr. CardioLocal review all of my test results by showing me the results.  I would have seen that the Echocardiogram was reporting a normal Ejection Fraction and would have been able to question it.
  • Get a second opinion – If you are diagnosed with a disease that will be life altering, get a second opinion… maybe even a third. And get it from the best medical source you can find.  Going to the Mayo Clinic for a second opinion was a game changer for me, and ultimately led to the realization that I was fine.
  • Monitor your own vitals if it is important to your diagnosis – It was important that I bought a blood pressure monitor and kept track of my symptoms and blood pressure and called Dr. CardioLocal when my blood pressure was too low.
  • Gather Reliable Information about your condition – I am lucky, my sister is a nurse, and she was able to help me maneuver what the doctors were telling me.  But I also found several very reliable resources for information:
    • Healthtap.com – Once you sign up and have entered as much information as you care to share regarding your diagnosis, medical test results and medications; you can ask questions.  In a few hours you will get at least one answer, and maybe more, from REAL doctors!  You can also search previously answered questions regarding your area of interest.  And you can start a dialog with a Dr. via email for a relatively small fee.
    • Mayo Clinic.org – Mayo Clinic is not one of those sites where “anyone” can edit the information provided (like Wikipedia).  MayoClinic.org provides reliable information by medical professionals.
  • Consider alternative treatments – I have been seeing an herbalist for years for issues ranging from pain management to sinus infections.  I am one of those people that these alternative treatments seem to work well for.  My herbalist formulated a tea for me, along with a few other items that would support heart health, and my immune system.  Be sure to find someone that is qualified and well educated in their discipline.
  • Allow yourself to cry, being brave can be on the other side – I read somewhere that each tear we shed contains no less than thirty-eight toxic chemicals. So cry away your fear.  Allow the emotions, but try not to focus on the negative for too long.  When I find myself focusing on the negatives I repeat “Blessings, Blessing, Blessings” which makes me focus on the blessings in my life.

Well, that really wasn’t the way I wanted to spend my summer, but George and I have regrouped and are planning to take off on Stormy Monday again in January for the Exumas, Bahamas.  We are sincerely grateful that it all turned out to be just another “road bump” and are ready to resume our cruising lifestyle.

Grateful for it all

3 thoughts on ““Road Bumps” aka “I have what?!” aka “How I spent my summer”

  1. Rudi

    “Blessings, blessings, blessings” . . . Amen!!!!! Great & useful information well documented. I agree with your advice “Be your own health advocate” and/or “Heal thyself Physician!!” Love you, Rudi

     
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  2. Scott Lee

    Hey Susan, I noticed you were in Charlotte, NC recently, next time send me an email and plan on you and George to visit us — we live at Lake Norman just a little north of Charlotte. Your self analysis of your illness and advice are golden, what great insight for many others to follow in case of illness. Blessings and Happy Cruising! Scott Lee

     
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  3. Kat Robertson

    Susan, thank you for detailing your experience; your wise advice is appreciated. I am not a great fan of the medical professionals in this country and I too have experienced issues with my heart. I am definitely following your lead, conducting my own research so I will have questions for the local doctor I see. I hope to gain a clearer insight about what’s going on with my heart. So happy to hear that your sailing plans will not be thwarted! Abundant Blessings to you and George! Jörn and I are really looking forward to driving away from Savannah cold and visiting you!

     
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