HCM-ers: Introduce yourself or just say hi

I'm Janet and was diagnosed with HOCM in December 2020 after passing out. Medications haven't helped with chest discomfort/pain and I am looking at having a septal myectomy in a few months (due to not being on my antiplatelet medication for at least 6 months as I had a stent placement at the same time). I want to hear about the experiences from others who have had this condition and what worked or didn't work for them. Thanks to all who are part of this group and willing to share their experiences.

Hi Janet- I understand what you are going through. I am 70 now (my HCM was diagnosed when I was 65) and I had originally gone to Mayo for an evaluation in the spring of 2019, was told my HOCM was stable and come back in 5 years. I then had the opportunity to have a consultation at Cleveland Clinic in November 2019, was told things were still ok, come back in 6 months for a follow up, modify my lifestyle, continue on my medications, and things looked stable. Well that changed dramatically and things got much more involved quickly and I became more symptomatic by January 2020 so I went back to CC to get checked out in early Feb 2020. That led me to have a septal myectomy at the end of February 2020 at CC due to the severe obstruction. What I learned is that things can change very quickly from being controlled to needing more involved treatment. This is serious condition that needs attention and proper follow up. It is important to be your own advocate and be pro-active and mindful with your health. It is a long road to recovery but is well worth it. My main issue now is controlling my blood pressure which has been challenging and has meant lots of medications and lifestyle changes. Remember that everyone is very different with HOCM. FYI I went to Cleveland because it is more convenient for us (we live in southern Indiana) and have family and friends there which is a big help. Mayo is an amazing place for heart care.
Keep in touch, take care and good luck.
Barb

My husband was diagnosed with HCM at the age of 43, he checked in regularly with a cardiologist and took the same meds for many years. We traveled adventurously and in 2017 climbed a volcano to visit the gorillas in Rwanda at 73. In March of 2018 he collapsed at home and had a defibrillator/pacemaker implanted, his HCM obstruction was now impacting his life, syncope often, to the point he was not allowed to go off by himself ( we live in the back country of San Diego. He had a septal myectomy at Mayo in Rochester on October 4 2018 and is back to normal ( whatever normal is) 2019 we took a month long vacation to India. We were thrilled with care he had at Mayo and the continuing care from a young cardiologist. Hope this helps

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

Hi Barb, thanks for your reply and story! I'm sorry to hear though you are having troubles with your blood pressure - hopefully you will find a solution. I had an ICD implanted at the time I was admitted to the hospital and while I wasn't on any medications, I am now on several and I do not tolerate medicines very well and have had several changes over the last 3 months and very possibly will have several more. I understand the seriousness of my condition and have been my own advocate for the last 7 years. I read way too much, keep excellent records of my visits, always have a list of questions and keep digging or asking until I get answers! I was scheduled for my septal myectomy last month until they discovered the antiplatelet issue and the potential risk of blood clots with having to go off Brilinta for several days. I am very impressed with the Mayo Clinic staff so far and am looking forward to this surgery in the hopes that I can live and not just exist. Thanks again for responding! I appreciate it! You take care as well and I'm sure you will be hearing "the rest of the story" in a few more months! Janet

Thanks so much for your reply and story! That is so inspiring to hear how your husband has been able to live a mostly "normal" life. I had an ICD implanted when I was admitted to the hospital, but no pacemaker issues for me - I'm glad. Your travels sound amazing and keep on having those adventures! I tell my grandkids I'm going to live to be 100! My husband and I are planning some trips (starting in 2022) where we will be hiking the mountains (in the United States for now). It was going to be this year, but that had to get postponed - for now we will be hiking the trout streams in Northeast Iowa and Southeast Minnesota! I've been impressed too with the staff at Mayo! Thank you again for taking the time to let me know there can be life after HCM! Take care and safe future travels!

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!

If you read the reviews on Dr. Schaff it says he has zero patients returning to the hospital. He is probably the best surgeon in the country for this surgery. When my grown children were flying up to Rochester they sat next to a Fellow or Resident at the Mayo Clinic. They had a conversation with her and told her about my surgery. When they told her who the surgeon was she waved her hand and said "Piece of Cake, you don't get a better surgeon". You will be just fine with him and his team.

I saw that too! Also one of my Rehab nurses has a cousin who just retired from the Cardio Department at Mayo and she said he is the best! I will be in good hands with all the staff! Thanks for passing this on!

I just noticed this conversation from an email and decided to pop in on it. Dr Schaff was my surgeon for Septal myectomy 2 years ago come June. Not only is he the best but the entire heart center staff is TOP of the line. I heard he was training so he could retire and to that I can only say PRAISE GOD he hadn't retired before doing my surgery. It's CRUCIAL that kind of surgery is NOT done at any run of the mile hospital. The mortality rate is shocking. One doctor actually told me not even to go to any MAYO...make sure it's Rochester.............BECAUSE of Dr Schaff! I'm sorry I didn't get in on the beginning of this but who is having the surgery, you're in good hands if you go there.. If you already had it...you already KNOW it. 🙂