My Septal Myectomy Speech from 2023

My name is Jean Ferrante.  I am 57 years old.  I am a heart warrior.

On February 14, 2018 (aka Valentine’s Day), I was officially diagnosed with Hypertrophic Obstructive Cardiomyopathy.  Those are some big words!  They refer to it as HOCM, but me?  I like to say the big words.  It makes me sound smart!  On that day, I joked with my cardiologist telling her that I thought it was quite funny that I was meeting a heart doctor on a “heart” holiday.  She did not laugh.  But having it on the 14th, made it very easy for me to remember the date of our first visit!  Back then, my symptoms were mild and completely under control with two medications.  Fast forward to May 18, 2022, 4 years later.  On that day, my cardiologist told me that sadly, my HOCM had progressed, and that I was too sick for her to care for anymore.  My symptoms were out of her wheelhouse.  Talk about a letdown.  My heart doctor broke up with me!  And the next step would be for me to go to a HOCM Specialist.  In Oakland.  Oakland – where getting from point A to point B is almost impossible. 

On May 27, 2022 (The Friday before the big Memorial Day holiday weekend), I met my HOCM Specialist.  I will not say his name or stand here in front of all of you and throw that HOCM Specialist under the bus, but what I will say is this. He never gave me eye contact.  In fact, there was actually a brief moment during that appointment, when I actually thought he might have been sight impaired.  At any rate, full sight or sight impaired, we did not vibe.   He told me that I was the sickest patient he had ever seen in his 31 years of practicing!  He also said it was imperative that I have a surgery called a Septal Myectomy at the Cleveland Clinic or I would be dead before the end of the calendar year.  There were no doctors that performed the surgery I so desperately needed in the City of Pittsburgh.  This information did not sit well with me.  How could I live in the City of Pittsburgh where we have all of these amazing surgeons and hospitals and none of them performed the specific surgery that I needed.  I went to my only friend on most days, Google.  Google and I have been together for quite some time now.  He always has time for me!  (Pause for laughter.)  Google told me that there were several doctors that performed that surgery.  The one that impressed me the most was Dr. Pietro Bajona.  The layers of his specificity in HOCM and Septal Myectomy surgeries were the exact surgeries that I needed.  Enter Kathleen Ridgeway, the Coordinator of the HOCM Clinic at Allegheny General Hospital.  Kathy walked me through what their team would do for me.  Sadly, I had to wait 3 months because my “specialist” was with UPMC and I had to switch to Highmark insurance.  But do you know what?  Even though I wasn’t an official Highmark patient yet, Kathy sent me a packet of information on HOCM and AGH.  What to expect.  How to prepare.  Anything and everything I needed to know about HOCM.  She also checked in with me several times over those 3 months.  Have you ever heard of someone like that?  I have not. Highmark employee checking in with a UPMC patient.  Question: Can’t we all just get along and work in tandem?  It is the patient that suffers when we don’t work together as a team.

September 28, 2022.  I drove to Allegheny General Hospital to meet Drs. Murali and Bajona.  I may or may not have cried underneath my mask whenever they told me how sick I was AND if I waited too long, they would not be able to help me.  They also said I would probably die if I didn’t have the surgery before the end of the year!  I can’t hear that sentence enough!  I mean, I guess deep down inside, I knew it was not normal to have such severe shortness of breath (which they abbreviate as SOB) but as women, sometimes we tend to ignore the signs.  They scheduled my Septal Myectomy surgery for November 2, 2022.  They did tell me that they might have to replace my mitral valve as well, but they wouldn’t know until they opened me up.  I went back to my good friend, Google.  I looked up the surgery on YouTube.  BIG MISTAKE.  Don’t do it!

My life has never been the same since that day.  That surgery literally saved my life!  It wasn’t a 1-2-3 re-set.  There was no Control + Alt + Delete.  And, there were several complications, but no mistakes were made.  Nothing was done wrong on their part!  I had a severe reaction to some of the medications.  My ankles swelled to the girth of my thighs and my feet looked like the jolly green giant’s feet, but other than that …it was smooth sailing.  (Pause for laughter.)

The team at AGH immediately addressed those issues.  We had several different cocktails of medication to get rid of the swelling and I must admit, I wasn’t the happiest patient during that time in my life.  I kept telling them. “Guys!  I’m fat.  And right now, I look 3 times as fat as I was on November 1st. You have no idea how much this is triggering me!”

Full Disclosure: I may have sent pictures.  Of my side profile.  Without underwear on.  I’m sure they are on the internet somewhere!

I go in for my 1-month follow-up appointment.  I drove myself and just thought it would be hello,  how are you, height, weight, blood pressure, 02 level check, blood work, nice to see you again, good-bye.  Nope. My heart went into atrial fibrillation which doesn’t sound like a big deal, but when it happens, you literally feel like you are having a heart attack.  I thought for sure I was going to die the first night of that 2nd re-admission.  But again, the nursing staff on 12A (they know who they are special hello to Liz!  Hey girl!), took care of me and all of my idiosyncrasies.  Am I someone that asks a lot of questions?  Yes.  Do I question every medication you are giving to me and its potential side effects?  Also, yes.  Do I keep that small red notebook with me at all times? You betcha!  Knowledge is power. 

I go in for my 3-months follow-up visit. You would think I would have learned from follow-up 1 to pack a bag “just in case” …but I didn’t.  Admission #3 because I had fluid in the sac around my heart called the pericardium.  I had to go in for another surgery.  This surgery is called a pericardial window.  Literally.  I sat in that office and thought “HOW THE EFF COULD I FORGET TO PACK A BAG?”  Silver lining, I had all of the same nurses from admission 1 and 2.  I’m literally a VIP at AGH at this point.  The one transportation employee said to me “How do you know everyone on this floor?”  I was like “I’m a VIP here.” 

That surgery went off without any problems.  Short and sweet.  My only complaint was that I had to carry this suitcase around.  This suitcase was keeping all the drained fluid from my heart.  They had to monitor how much fluid was coming out of my heart.  I had a catheter in my heart with a tube connected to the suitcase!  Kind of annoying, if you really want to know the truth!  It kept falling over.  I kept thinking “We can clone sheep, but we can’t get an apparatus to keep standing up that is holding someone’s gross fluid?”  They drained 3 liters of fluid out of my heart.  THREE LITERS! 

Once that surgery was performed, honestly, I was like a new person.  I couldn’t believe how much better I felt.  Walking the halls was absolutely no problem.  And now, 10 months post-op, I’m working out like a true athlete.  Okay that last sentence was a complete lie. I’m working out to the best of my ability, and I love it.

My name is Jean Ferrante.  I am a heart warrior.