Is this HCM? Needing Some Opinions

[JillC]

Hello Jen, It sounds like you have felt in distress, breathingwise for quite a long time. The most important thing to do is to see a cardiologist that has a wide base of knowledge including HCM. The U.K. Has a Cardiomyopathy association with a phone line that is staffed by registered nurses trained in cardiomyopathies of all kind: Cardiomyopathy.org phone for the help line is 0800 018 1824.
Also, shortness of breath can be caused by lung issues as well as heart issues. An Exercise VO2 study can help distinguish between lung, heart, and deconditioning issues and could be very helpful. It sounds like that might be what you are scheduled to have soon. Make a list of questions to ask your doctor and be sure you get the answers you need.

[jenmaireee]

Hello people, I am a 20 year old female living in England. I am currently being reviewed by a Cardiologist on the NHS and I am looking for some opinions here, so I hope nobody minds me posting!




I have experienced severe exercise intolerance since I was around 11 years old. At least, that’s when I can remember it starting from, perhaps it was earlier. Within a minute or so of cardio (running, jogging, uphill walking, rowing etc.) I have always become very short of breath. Completely and utterly out of breath. In school I have always been at the back of the class in PE (gym class), especially in things like cross country. Miles behind other people in any class I have ever participated in, with overweight people, smokers and seniors always fine whilst I’m totally struggling. I have also experienced palpitations for a lot of my life, especially when I lie down I can feel them in my throat now and again. My resting heart rate is low in the 50’s or 60’s and I can’t feel a racing heart or palpitations in a row. I’m also fatigued most of the time but I’ve recently been given iron for very low iron levels that have only developed recently.




I have had two echocardiograms done and the last one I had done I got given the results. Both were said to look fine and my results are as follows:




IVSd - 0.84cm

LVIDd - 4.60cm

LVPWd - 0.79cm

IVSs - 0.92cm

LVIDs - 2.84cm

LVPWs - 1.09cm

EDV (Teich) - 97.24ml

ESV (Teich) - 30.66ml

EF (Teich) - 68.46%

%FS - 38.18%

SV (Teich) - 66.58ml

Ao Diam - 2.38cm

LA Diam - 3.18cm

LA/Ao - 1.33




DOPPLER




LVOT Vmax - 1.20m/s

LVOT Vmean - 0.81m/s

LVOT maxPG - 5.77mmHg

LVOT meanPG - 2.98 mmHg

LVOT Env. Ti - 289.52 ms

LVOT VTI - 23.41cm

HR - 207.24 BPM

AV Vmax - 1.43m/s

AV maxPG - 8.13mmHg

RVOT Vmax - 0.95m/s

RVOT maxPG - 3.64mmHg

PV Vmax - 0.73m/s

PV maxPG - 2.11mmHg

TR Vmax - 1.89m/s

TR maxPG - 14.23mmHg




Other than this, trivial mitral valve thickening was noticed only with “fully functional” valve leaflets. Sinus tachycardia apparently caused summation of the mortal inflow pattern as well. This echocardiogram was done approximately 15 minutes after a stress ECG which was also normal with no arrhythmias present. However the amount of time I could run for was limited and I was told I was just deconditioned which I know isn’t true. I have participated in dance since I was two years old and I even noticed in my classes that I was getting more short of breath than everybody else. I stopped dancing a few years back because of moving house. Anyhow, my point is that I’ve tried to be active but my stamina has never improved and never got drastically worse. It is the same as it was 10 years ago with absolutely no improvement. Another note would be that no heart murmurs were heard but I can feel a buzzing over the left side of my neck near my collarbone that feels different to all my other pulses. All of my ECG’s have come back fine.




I have been scheduled for a cardiopulmonary test and a tilt table test. Hopefully something will come of those but I wanted peoples opinions on this potentially being Hypertrophic Cardiomyopathy. What are the chances and does this seem likely? It’s stressing me out as exercise intolerance seems to be a running theme. I’m scared and I want to enjoy my upcoming holidays. As far as I’m aware I have no obvious family history of HCM. However, my father had open heart surgery last year for aortic regurgitation and a triple bypass. He is in his late 70’s. He had a heart murmur since he was in his 40’s from the aortic valve and he’s had high blood pressure most of his life; extremely high. My half brother on my fathers side of the family had a random batch of endocarditis with no obvious cause. It nearly killed him. He’s in his 50’s. He had many tests including an MRI and they don’t know what caused it at all. My grandad died at 66 suddenly of a “massive heart attack” and my aunt died in her 70’s of heart related problems. My cousin died in her 30’s very suddenly and she used to get seizures as well. I have three other half siblings who are in their 40’s and 50’s and seem fine at the moment heart wise. I am also the oldest full sibling of five. The four younger ones seem fine and my younger brother competes professionally with martial arts. I seem to be the only one in my entire family that has this awful struggle with exercise, stamina and exertions shortness of breath (stairs, hills, cardio etc.).




Thank you for you input in advance everybody, I’m losing my mind a little here and I need some opinions.




Ken