Arlene's Journal

Hello again I haven’t posted in several years. I am approaching my 7 year anniversary of AVR on January 17, 2020. When I went for my yearly stress echocardiogram in 2023 I was diagnosed with hypertrophic cardiomyopathy. I was surprised as I didn’t have any symptoms. Over the next two years things progressed, and I was diagnosed with obstructive hypertrophic cardiomyopathy. I was sent to cardiologist who specialized in HCM. I had a more in-depth stress echo in which they found something new what they believe to be a sub aortic membrane. I had a TEE which confirmed that I do have a sub aortic membrane which has severe stenosis in it. My team of cardiologist presented my case to a surgeon. They are recommending I have open heart to remove the subaortic membrane. Thin the lining of my left ventricle and replace my aortic valve again. I am symptomatic at this time. I’m just wondering if there are any others who have had this experience or have had a sub aortic membrane? Also those who have had to have re-operations how well did you recover the second time ? I meet with the surgeon on 12 January?

Wow I am so thankful to be doing so well. I am feeling so good. I still have to be careful how much I pick up at times but it just is uncomfortable not really painful. Oh and to be able to sleep again at night and not need naps. I have not had complications at all with my heart. I am only on an 81 mg aspirin a day no more beta blocker. My blood pressure was a little high when I first went off it 2 moths ago but has stabilized in normal range. I have just started cardiac rehab because of the COVID-19. Seems to be very easy right now but my cardiologist wanted me to go so I will. The only issue I am having is I had an iv inflate and my right forearm is very sore and weak. We are starting with very light weights at cardiac rehab to try and build that back up. I am making a lot of jams and jellies this time of year and even stirring the jam hurts my arm. I would like to be able to pick my canners off the stove but that is a minor issue compared to all the other activities I am able to do now. They tell me I will even feel better in another six months I can’t imagine feeling any better than I do now. I had a six month echo and everything looks great. For those in the waiting room I remember how hard the waiting was and I can’t imagine how much more stressful it must be with all the Covid-19 issues but know you are be thought of and prayed for.

It’s been four weeks since my AVR. I am recovery well. The pain is much less which I am grateful for. I am able to sleep in my bed. I wake up a lot but fall right back to sleep. I am walking and can walk for 20 min at a time now. I go to the cardiologist March 3rd and hopefully will start cardiac rehab soon after. I am also able to do some cooking which I love to do. We are excited about the arrival of our forth grandchild this August it is something to look forward to.

It’s been two weeks since my AVR. I am amazed and thankful for what our bodies can do. I was able to walk to the edge of the lawn and look out at our back forty and watch the sunset last night. One of my favorite places. I used guided imagery before and after surgery and our back forty is my special place. In the summer we harvest hay from it but we also watch the birds, butterflies, deer, turkeys, and fox. In the winter we sled and snow shoe. I am sore but compared to two weeks ago or a week ago so much better. I am only taking Tylenol when needed like yesterday when I sneezed four times ouch. I loved hearing the doctor say, “ no more heart murmur” when she listened to my heart. I have never not had one. I have had only minor issues such as thrush from the antibiotics they give you and feeling light headed when taking a shower. I take lots of short walks that add up to a mile. I was very symptomatic before surgery and I already notice a difference walking and going upstairs I am no longer short of breath. My husband and family have been wonderful. My husband went back to work after being off two weeks with me. I am very grateful for this website also. The support here is wonderful because as much as those around encourage us, being able to connect with those who have or are going through the same or similar health issues is extremely helpful. Thank you Adam for creating this website and for all those who post.

Everything is going well since my AVR Friday. Missing my grandsons and today is one of their birthdays. I am making good progress with recovery. Nausea and light headed some but sleeping well now. Last 24 hours getting narcotics now only Tylenol and a form of Motrin

We will be ringing in the new year with hope and peace. After getting a second opinion from a local cardiologist and one from the Cleveland heart clinic I am moving forward with surgery. They both agreed that my bicuspid aortic valve has severe aortic stenosis and needs to be replaced. I am on the surgery schedule with Dr. Vargo at the Cleveland Clinic on January 17, 2020. I feel good and at peace with this decision. Next will be deciding which valve.

I am so frustrated right now. I had a heart catherization done today and encountered a doctor that was not nice. He told me before we went in for the procedure that he didn’t feel the echocardiogram was accurate that I have severe aortic stenosis. When he was done he told me I have a bicuspid aortic valve with some stenosis, mild stenosis in my pulmonary valve, and mild regurgitation in my mitral valve and I do not need surgery. My symptoms have nothing to do with my heart.