HCM-ers: Introduce yourself or just say hi

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

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

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 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

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.

Thank you
I would like to be part of this group

Thank you, Colleen! I can't tell you how valuable it was for me to be able to read about others stories, symptoms and experiences. If even one thing I mentioned can help someone else, I am beyond grateful. I am also grateful for my heart-shaped pillow. It's a great souvenir and reminder of how much stronger we are than we believe. It came in handy to 'prop' my arms up during recovery. Your shoulders and neck are 'wound up" so tight you can't relax them for some time. I am at just past the 6 week mark and still use my pillow while I watch TV at night. Thank you for your kind response. I hope I could help another HOCM person. I'm still so impressed how amazing Mayo Clinic is. World Famous for all the good reasons!

So helpful, @karukgirl. Thanks for reporting from the front lines of a HCM survivor. It truly is helpful for those who are newly diagnosed to learn from people who have been there.

And just how grateful were you for your heart-shaped pillow?

Hello fellow HOCM folks. It's been six weeks since my surgery at St.Mary's in Rochester. First, I survived! Second I made it home safe. All the things that happened in between were either unexpected (like seeing 'stars' after surgery for weeks) or expected (like the pain)
The unexpected may have happened to others who had surgery, but for those whose surgery maybe coming up, I would like to share them just so you too can be prepared. You have to know that with surgery of this magnitude, pain will be there. So plan for that. I only had half of one half of a pain pill the entire 5 day stay, and the rest of the time I got plain Tylenol. Which didn't do much for me. The five days feel as though time is crawling...but it also went quickly. I won't bore you with each day's progress...but the day I got the chest tubes out was a milestone! And the next day the wound vac came off was good too. You feel so free! So, the strange things I was not expecting: Stars. I would see stars through out the day. I still do, but not as much as right after surgery. I also get 'ocular migraines' and these came on with a vengeance. The PA said it was probably due to anesthesia. In fact, most everything that didn't make sense was blamed on anesthesia. Then there was the pain in my clavicles. Ouch. They hurt so much. It all goes along with having your chest opened. A lot of torque is placed in certain areas, like between your shoulders and your upper chest. The nursing care is beyond care. These people are stellar! They could not be any finer as human beings. In fact everyone I had contact with, from housekeeping to the surgeon were wonderful, caring, compassionate people. I was not prepared for ICU. I don't want to scare anyone who may have surgery coming up, but it was intense. Hence the name, Intensive Care Unit. We stayed at the Courtyard Marriot which is directly across the street from the front entrance of St. Mary's. I highly recommend them. There are other places along 2nd street, but none this close and seriously across from the main entrance. For your support person, this is a good place too. Talk about convenience. There are so many little details I could share, but I fear my post would be too much for the board to handle! There is a McDonald's next door to the hotel for weak moments. There is a wonderful healthy grocery store called Fresh Thyme that is within walking distance and carries water, healthy foods and snacks and wine! Random thoughts: I was very happy with my Old Navy wide leg linen pants. Easy on, easy off, didn't wrinkle. I was very very happy with my 'lounging' bras from Marshalls. Easy on. Easy off. For me, I wanted the support but nothing with wires, hooks, lace. Nothing. Just support. I was very happy I took slip on shoes. I was able to pull shirts on over my head...but it does hurt. I managed to pull on a dress too. We walked to St. Mary's, where you are screened everyday for Covid, got our day of the week sticker, and then we were able to board the free shuttle to downtown at the Gonda and walk where ever we needed. Including our last day there when we went to Chester's. Best place! Yum! Your appetite is stressed, things taste funny or strong, but it all comes back. You hurt. It takes several weeks to move with ease. That is coming along. I started cardiac rehab at the end of three weeks. Early but doable. I started driving at the end of three weeks also. Not advised, but I had too. It was important. Sadly, three days after I got home, my sweet, WWII daddy died. So the stress piled on top of stress. But four weeks later, I still grieve and know that stress management is important. Be kind to yourself. Take each day as a gift, but go slow. Don't over do it. Easy to say. Hard to follow my own advice. I was out walking three miles each day as soon as I could. These are just some random thoughts, thrown out to those who may be on the surgery schedule. There is NO finer place than the Mayo Clinic. You are in the best hands ever. This is your life. It's hopefully a one time surgery for you...so you deserve the best. Thanks for letting me post this. Reporting live from the smoke-filled skies of Northern California, this is a survivor!

Thank you.