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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: Nov 28 11:57am | Replies (877)Comment receiving replies
Hi Janet - I to understand what you are going through. I was playing tennis and out of nowhere I couldn't catch my breath. It took a couple of hours to completely recover. I went to the cardiologist many times, I went to pulmonary doctors, etc. It took many years to diagnose what I had. I was put on medication that did not work. I was in stage 4 of heart failure. I couldn't walk across the room without getting out of breath. I finally found a cardiologist that had a gut feeling I had HOCM. I was hard to diagnose for the tests showed nothing. My cardiologist suggested I go to the Mayo Clinic for confirmation. I went to Rochester, Minnesota. They finally diagnosed it and I had a septal myectomy with Dr. Hertzell Schaff on October 1, 2019 The reason I decided to have it at the Mayo in Rochester is they do 200 to 250 of these surgeries a year. The care at the Mayo Clinic was fabulous. I cannot say enough about the Mayo . I could feel a difference the first day. I could finally breathe. The post op is not easy but well worth it. I read a lot of stories on this website and got a lot of insight on things to do. A necessity for me was a recliner for I could not sleep in bed for quite some time. I also had issues with my back. The pain was so intense and I did take pain medication and had several massages through my hospital. I can say with all the post op issues I would do this again in a heartbeat. I now play tennis, pickleball and have no after effects. I had the surgery when I was 72. I am living a normal life again. I hope that helps and good luck to you.
Linda
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Linda, thanks for your reply and that is scary that you were so hard to diagnose. I had no previous symptoms and collapsed outside of our house. Luckily, my husband heard someone at the door (I was trying to get back inside as I knew I was going to be sick-I didn't realize that anything else was wrong with me) when I passed out. A lady was driving by and saw me laying on the ground and got parked and came over. The angels were watching over me! Dr. Schaff is going to be my surgeon too. I was scheduled to get this procedure done last month, but there was a very real concern about blood clots since I'd only been on my antiplatelet 2.5 months and they wanted me on this for 6 months since I will have to go off this for several days before the surgery. I'm delighted to hear you felt the difference on day 1 - this is my hope too. I have read quite a bit about Mayo Clinic and Dr. Schaff felt I was an ideal candidate for this and he feels confident that he can help. It sounds like the recovery will be a bit daunting, but my husband calls me a "warrior", so I hope I can live up to that nickname. I do have a very nice recliner and have looked at possibly getting a device to lift up the chair to help with getting up. I had read where someone else said massages and/or a chiropractor can help. This is on my list of questions to ask the staff! My local hospital's Cardio Rehab staff is very curious as they haven't had the opportunity to work with anyone who has had this surgery and I know the Mayo staff will give me a plan for my rehab after the surgery. They have all commented that I really push myself (within reason) and have said I am way ahead of most of their patients. So fingers crossed I will be able to get back to life a little later on this year. Thanks for your positive comments and suggestions. I really do appreciate it very much! Keep on with all your activities! Stay safe!