HCM-ers: Introduce yourself or just say hi

Hello, my name is Valleri. I'm 73 years old. My GP heard I had a heart murmur for the first time a year ago. He ordered an echo for me in order to rule out anything serious going on. Unfortunately, it showed I had HCM, so I was referred to a cardiologist. He started me on Metoprolol 25 mg, which was later doubled to 50 mg. I haven't noticed any changes (good or bad) with my symptoms, yet. In a way, I was happy to know there was a reason I was having periods of breathlessness once in a while and increased tiredness.

I'm a vegetarian, so I eat a fairly healthy diet, other than I do eat and drink some dairy. I drink 1–2 quarts of water a day, and some coffee every morning. In addition to the echo, I also had a cardiac MRI, which confirmed my HMC. I was riding my exercise bike 20 minutes, 5–6 times a week ... until I couldn't. I'm a former smoker of 1/2 pack a day for 30 years until 2017.

Over the past year, my episodes of breathlessness have become more severe, and they happen more often. I now go through periods of gasping for air for 30–45 minutes, with dizziness, and my pulse rate jumps up to 100+. Nothing helps when that happens, other than lying flat on my back. (Is that weird?) Supplemental oxygen doesn't help, nor does sitting. That is followed by an hour or two of dizziness and shaking like a leaf.

My mother died from cardiac arrest when she was 54, and I am the only person still alive in my family.

My cardiologist also recommended I see a doctor three hours from me to find out if I would qualify for the mavacamten study. Unfortunately, I don't have transportation, and there aren't any shuttles between where I live and the hospital three hours from me. I'm still trying to work something out, though. If I can get that figured out, then I can see if my insurances will cover much of the $87,000 the prescription costs per year. (gasp) There isn't a Mayo Clinic in the state where I live.

I think that covers everything.

Hello, my name is Valleri. I'm 73 years old. My GP heard I had a heart murmur for the first time a year ago. He ordered an echo for me in order to rule out anything serious going on. Unfortunately, it showed I had HCM, so I was referred to a cardiologist. He started me on Metoprolol 25 mg, which was later doubled to 50 mg. I haven't noticed any changes (good or bad) with my symptoms, yet. In a way, I was happy to know there was a reason I was having periods of breathlessness once in a while and increased tiredness.

I'm a vegetarian, so I eat a fairly healthy diet, other than I do eat and drink some dairy. I drink 1–2 quarts of water a day, and some coffee every morning. In addition to the echo, I also had a cardiac MRI, which confirmed my HMC. I was riding my exercise bike 20 minutes, 5–6 times a week ... until I couldn't. I'm a former smoker of 1/2 pack a day for 30 years until 2017.

Over the past year, my episodes of breathlessness have become more severe, and they happen more often. I now go through periods of gasping for air for 30–45 minutes, with dizziness, and my pulse rate jumps up to 100+. Nothing helps when that happens, other than lying flat on my back. (Is that weird?) Supplemental oxygen doesn't help, nor does sitting. That is followed by an hour or two of dizziness and shaking like a leaf.

My mother died from cardiac arrest when she was 54, and I am the only person still alive in my family.

My cardiologist also recommended I see a doctor three hours from me to find out if I would qualify for the mavacamten study. Unfortunately, I don't have transportation, and there aren't any shuttles between where I live and the hospital three hours from me. I'm still trying to work something out, though. If I can get that figured out, then I can see if my insurances will cover much of the $87,000 the prescription costs per year. (gasp) There isn't a Mayo Clinic in the state where I live.

I think that covers everything.

Hello, my name is Valleri. I'm 73 years old. My GP heard I had a heart murmur for the first time a year ago. He ordered an echo for me in order to rule out anything serious going on. Unfortunately, it showed I had HCM, so I was referred to a cardiologist. He started me on Metoprolol 25 mg, which was later doubled to 50 mg. I haven't noticed any changes (good or bad) with my symptoms, yet. In a way, I was happy to know there was a reason I was having periods of breathlessness once in a while and increased tiredness.

I'm a vegetarian, so I eat a fairly healthy diet, other than I do eat and drink some dairy. I drink 1–2 quarts of water a day, and some coffee every morning. In addition to the echo, I also had a cardiac MRI, which confirmed my HMC. I was riding my exercise bike 20 minutes, 5–6 times a week ... until I couldn't. I'm a former smoker of 1/2 pack a day for 30 years until 2017.

Over the past year, my episodes of breathlessness have become more severe, and they happen more often. I now go through periods of gasping for air for 30–45 minutes, with dizziness, and my pulse rate jumps up to 100+. Nothing helps when that happens, other than lying flat on my back. (Is that weird?) Supplemental oxygen doesn't help, nor does sitting. That is followed by an hour or two of dizziness and shaking like a leaf.

My mother died from cardiac arrest when she was 54, and I am the only person still alive in my family.

My cardiologist also recommended I see a doctor three hours from me to find out if I would qualify for the mavacamten study. Unfortunately, I don't have transportation, and there aren't any shuttles between where I live and the hospital three hours from me. I'm still trying to work something out, though. If I can get that figured out, then I can see if my insurances will cover much of the $87,000 the prescription costs per year. (gasp) There isn't a Mayo Clinic in the state where I live.

I think that covers everything.

Hello, my name is Leonardo Guerra, I am 80 years old, and I live in South Texas, about 20 miles from the infamous Rio Grande Valley River where the river separates Mexico and the USA. The government has a wall built from Brownsville, Texas to El Paso, Texas so the illegal immigrants cannot cross from Mexico to the USA. However, the illegal immigrants still find a way to get across to the USA and I sure don't know how they do it.

Changing the subject, I have been diagnosed to have heart disease, congestive heart failure, coronary disease, 2 upper chamber heart valves that do not close properly and are leaking blood, blood pooling, AFIB, low heart rate in the 40s, sleep apnea and severe pulmonary hypertension which causes me to have exhaustion, tiredness and shortness of breath. I have had 3 cauterizations to determine vein blockage, 2 cardioversions to get my heart back to normal rhythm, 2 Ablations to eliminate AFIB, and the last procedure on July 15th was Cardio Cauterization. I have a 20 to 30 percent blockage on my coronary arteries and my Cardiologist said it was not significant and nothing to worry about. But he is very concerned on my severe pulmonary hypertension which unfortunately there is no cure for it.

Unfortunately, the procedures for my AFIB I have had worked for about 2 to 3 months and eliminated my AFIB, but my AFIB returned, and I have the same symptoms as before. I am very disappointed of having to go through all of these procedures to no avail, but I gave it a try but did not work out for me.

As for the pulmonary hypertension, my Cardiologist has me on diuretic medications daily but he wants to double my dosage so my body can secrete more fluids from my lungs and body. However, these diuretic medications affect my kidneys, and I am now on stage 3 of chronic kidney disease. So, if I double my dosage of diuretic medications, they will make my kidneys worse and the last thing I don't want is to wind up on dialysis.

So even though my Cardiologist prescribes a double dosage of diuretic meds, I am not going to take them and will take my chances with the pulmonary hypertension. He needs to get clearance first from my Kidney Specialist first and I have left a message to my Kidney Specialist that I am opposed to taking anymore diuretic medications.

My brother is surprised that I am still alive and walking, but I tell him that I have left everything in God's Hands and only God will decide how much time I have left. I am doing my part, and I am not giving up and will still continue to go to my follow-up visits with my doctors and Specialists.

Well, I guess I have said enough, and I am rather tired, so I am going to my recliner and rest as much as I can.

Thank you and God Bless.

Hi,
My surgery is September 26th.

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