Hcm and swelling
My people, I was diagnosed with hcm at 25, 33mm normal gradient and EF but significant fibrosis. I was asymptomatic until 39, I’m 41 now. Actually that’s not true, I got dizzy upon standing and felt my heart pounding almost all the time but I thought everyone did.
Around 39 I started having mild swelling in my lower legs from time to time- usually when I didn’t get enough sleep and had to be standing all day. It’s gotten worse over the last year. My dr put me on 20mg lasix which helped for a bit. Then suddenly my gradient went from 24 to 59. For some reason I wasn’t started on mavacamten right away but my dr (who is the head of a center of excellence hcm program) added metoprolol and jardiance and upped the lasix to 40mg.
After this, I was randomly hospitalized because I got a piece of food stuck in my throat, could not swallow it. Embarrassing but labs showed my potassium was very low. I mentioned it to my dr, and asked if we should be monitoring my electrolytes. I was brushed aside.
About a month later while standing in my mothers kitchen I passed out and had an episode of convulsive syncope- where you pass out and look like you’re having a seizure. I was terrified, thought I had just lucked out ( I had a defibrillator but the explant warning went off a week before my 75yo mother had a liver transplant, I couldn’t leave her side for literally almost a year because there was no one else to care for her. my drs warned me my defib likely wouldn’t be avle to provide ample therapy if I had an event so I was basically without backup ay this time)
I went to a different hospital than the one my usual drs were at and learned ny gradient had jumped to almost 150. I also learned that my potassium was once again extremely low and that it was due to the lasix. Apparently in hcm, you have to be really careful with diuretics because they reduce blood volume which affects how hard the heart has to work to get blood where it needs to go and this worsens obstruction.
My dr insisted I be seen by a neurologist because I must have a seizure condition. This was ruled out. I was put on mavacamten, gradient came down to 20, ef 60.
I’m only on 20mg of lasix now and I end up with swelling every day. Despite the mavacamten eliminating shortness of breath, chest pain and palpitations, the swelling and fluid are preventing me from living my life. I can’t not wear compression socks, it’s about to be 90-100 degrees daily. I can’t wear shoes comfortably, i can’t button pants or tops anymore due to fluid in my abdomen so I’m just no longer wearing any thing but sweatpants and never leaving the house. My feet and ankles and shins and knees are in pain if I have to stand for more than a couple hours. I walk in my house and up and down the stairs (I make myself do 50-100 flights of stairs a day) I’m 5’3” about 155lbs.
Why isn’t my dr taking this seriously? What can I do? If this is the best it’s going to get.. I’ll be looking into death with dignity.
Oh eta: I’ve tried spiro, worst 3 months of my life. And I just had my transvenous icd removed and got an s-icd implanted at the beginning of April.