Pamela's Journal

Cindra Tiesi  Hi Pamela! I was so surprise to see someone from Burbank! So I wanted to send you a note right away. I live in N. Hollywood. I still need to finish up my member profile, but I had a TAVR - an aortic valve replacement, late March, 2023. I currently have an ascending aorta aneurysm, which is being watched. Anyway, it was great "meeting" you! ~ Cindra

Fidel Martínez Ruiz  Hey Pamela, just when getting up in the morning here I´ve read your story. I had my mitral valve replaced 2 years ago, and now my heart rate is between 55 to 80 when I´m sitting or doing houseworks , up to 125 when I´m in fast or athletic walking, but it drops to 48 or even less when I´m lying in bed. Then, 50 bpm doesn´t seem extremely slow .

Pamela Rubino   Hello Fidel, 
I’m so glad you’re doing well after your valve replacement surgery. If I felt fine, I wouldn’t be concerned about my low BPM, but the bouts of extreme fatigue are what concern me the most. 

Thomas Brusstar  Hi, Pamela.  I agree with you that the low heart rate doesn't seem like a problem.  Mine has always been kind of low, and at rest mine will still dip below 50.

The extreme fatigue seems like a bigger red flag.

I had a mitral valve repair in 2018.  I had MVP that doctors could hear forever (first identified when I was 20), but it got worse and then it went "flail" with several broken chordae in 2017.  After a slow diagnosis (a failing mitral valve can feel a lot like pneumonia -- shortness of breath, wet cough), I got a repair.   My valve still doesn't leak much after 7 years, so my repair was great.

I think a few failed chordae just increase the stress on the remaining ones, and I think your cardiologist will agree that the risk of the valve going "flail" is not something you should take.  You are still young (my age!) so you would recover perfectly from a valve repair, and then it would never need repair again.  If you wait until more chordae break and you need surgery urgently, you will also be older and a weaker patient.

My MVP surgery involved basically resecting the middle leaflet of one side of the valve (very common), and it was the chordae to the leaflet they removed that were broken in the first place.  So they didn't put any artificial chordae into my heart.  Your surgeon might find that your broke chordae are also the ones to the floppy valve leaflet, so you don't need fake chordae.

So obviously I'm not your doctor, but you should definitely see a cardiologist.  I wish I'd seen one earlier!  (My primary care people were happy to give me antibiotics for pneumonia when I needed hear surgery!)  My valve was such an obvious candidate for a textbook mitral repair that I saw a cardiologist for the first time, he looked at the external echo (trans-thoracic) and got me a meeting with the surgeon (who had a cancellation) an hour later, and the surgeon took one look and said I need to get on his calendar.  He didn't need a trans-esophageal echo to diagnose this, and said it was just an easy one but needed doing sooner rather than later.

Your cardiologist might tell you to get ahead of this structural problem, which is now symptomatic for you (fatigue).  I would just tell you the surgery is not as scary as it sounds, and you will be energized by how quickly you heal.

Pamela Rubino   Hello Thomas, 
Appreciate your detailed message. Very glad to hear that your repair was successful. From what I recall, I have 2 broken chordae (one on each valve). I’m not sure if they are completely torn or just stretched.

 Fortunately, I do not have pulmonary hypertension, and I rarely get short of breath. The only time I might get short of breath is if I’m going up a very long flight of stairs. I’ve always lived an active lifestyle and stay fairly fit.

 I’ve never had such a low heart rate, even while resting. I agree with you, I feel as if I need to get the surgery sooner than later. I don’t want to wait for more chordae to rupture. 

When I mentioned the low heart rate to my cardiologist, he did not seem concerned whatsoever, but at that time I was not experiencing the extreme bouts of fatigue. 
He’s always very positive but rather blasé about my MVP. I’m planning to get a second opinion. Thank you again for your input. 

Thomas Brusstar  Oh, that's actually good that you do not have pulmonary hypertension.  I now know that I  had bad PH by the time my valve was failing.  You'll do great.

John Cook  I think they generally don’t worry about bradycardia unless you have symptoms.  I’ve been in the mid-50s for resting heart rate and high 40s while sleeping.

Fatigue is a symptom. Tachycardia also isn’t good, especially if it’s v-tach.

I think you are right to get to a cardiologist.

DeLois Tweedy  Pretty lady! Sorry you are having issues with finding a doctor, but I feel you are doing the right thing in looking for another cardiologist. Sometimes second opinions are wise. Best of luck to you.

Greg Lewis  If it were me, I would get at least 2 more opinions. I say this because, I would firstly want to be very certain that surgery is the only option, or does it really need to be done at all, at this stage. At least one of those opinions should be from a surgeon. Good luck with this!

Pamela Rubino   Thank you for the well-wishes! I was recently diagnosed with grade B Esophagitis which may explain the pain in my upper chest. I'll be getting an echocardiogram in the next month.  Echocardiograms have always been nerve-racking experiences for me.  I'll post updates after my Echocardiogram. I really appreciate this site! I don't feel so alone anymore.