I'm scared

It is scary! So don’t beat yourself up for what you feel.

I was misdiagnosed for decades. For decades I was afraid I was going to drop dead if I exercised because my heart rate would go through the roof and I would get out of breath so quickly. Consequently, I became overweight, and out of shape because I needed to exercise. Doctors told me exercise, you won’t drop dead. I was put on a calcium blocker which was supposed to help me. It didn’t. Tests showed my heart wall was thickening. The doctors attributed it to high blood pressure, which I didn’t have.

Last year, I was finally diagnosed with HOCM. I was told about Camzyos and open heart surgery. I was scared! I am still scared! But, I want to live! So, with the encouragement and feedback of this group, and my specialist cardologist recommendation, I decided to try Camzyos. I have been on it for 9 weeks. It is not working as well for me as some of the other people in this group who are having excellent results. It’s been frustrating. But, I am doing what I have to do to live a better quality of life. I believe you can do it too! We are here to support you.

I completely understand, I’ve had a murmur and issues with getting short of breath pretty much all of my life, everyone constantly brushed it under the rug, when I was young I was told I would outgrow it and then as an adult several cardiologists just kind of blew me off and then one day my pcp got frustrated and demanded an echo and then walked to the floor of the hospital I was working at and told me what I had, she said she didn’t know much about it and referred me to a new cardiologist that had new recommendations every time I saw him until finally I went to someone new that I researched, after that he did an echo and realized the extent of the issues. I kept acting like it wasn’t that big of a deal until recently when my heart started beating out of whack and I got scared. I went to my cardiologist and he sent me to a new dr that is 6hrs away, I’m at the beginning of my actual treatment journey for hocm, I am very much like you said, I knew it was there, but when I went to this new dr he explained the extent of how bad it is and I became horrified. I am currently on week 5 of camzyos, I had my first echo and there was a slight improvement so that was hopeful, but my dr told me that I am going to need surgery, I am scared about it, but I listen to the encouragement and others stories about how their experience with surgery has gone and it makes me feel hopeful! I’m in this boat with you, I’m 45 and I look at my family and get so upset with how I’ve handled things, but we have got this! I feel like the absolute most important thing is to have a team behind you that are knowledgeable about hocm and that you trust, it isn’t a very well known issue so you wanna make sure that you get a team together that you have faith in. If you ever need anything just say the word, we are all in this boat together in various stages of our journey, it is scary, but it is doable.

Thank you so much for your response! We are so strong! I had the opportunity for gastric bypass but lost to much weight for insurance to pay. That was another other scary thought also. I should have done it instead of listening to everyone else's opinion but I didn't so gotta move with the best. Good luck with everything!

Thank you. Brought tears to my eyes. I'm so guilty for mistreating my body. I was a closet smoker off and on too. But we can't beat ourselves up. What's done is done and now we just have to do better and move forward. Prayers for you and your family. I'm glad to hear the positive results of Camyzos. I am started to feel relived about it.

I was diagnosed 12 years ago after I had triple bypass and Carotid bypass. I was 80%,85 % and 95 % blocked in my heart arteries and %98 blocked in my carotid. My Ef was 44. After Surgery they put me on beta blocker(Metoprolol) after three weeks my EF went to 32. My cardiologist said I needed a defibrillator so he put one in. I told the cardiologist it was the beta blocker and he said no. I refused to take it anymore and went to physical therapy for my heart. After 10 weeks of therapy it started coming back. I had gone to 20% but was back to 38%. I am now 55%EF. They told my family I wouldn’t make it , but if I survived the carotid then they would do the bypass three days after. I was 66yrs old . I am now 78! Mayo Clinic is awesome so you are in good hands! I don’t know if you are religious or not but put your hands in God and let him and your Doctors do their job. God works thru the skill of the doctors. If I can do it at age 66 you can too. Then after you recover only strength in your self will get you thru. I will be praying for you.

Amen! I absolutely believe in prayer and God. Thanks for sharing your story. I'll put you in my prayers. ♥ Please pray this medicine helps and if I do eventually go to Mayo clinic, I find resources to help pay for travel etc. as well as good surgery.

Do get an appointment with the Mayo clinic and hear what they have to say to you. You may learn about other options besides surgery. Before I started Camzyos, I was on Disopyramide for 7 years and it changed my life. It is a drug given to patients with HCM. I am currently on Camzyos to see if it is a better option for me, but it hasn't been a big change for me. I am a patient at the University of Washington with an amazing Cardiologist who tells me there are so many drug options before surgery. May you find encouragement on this blog and at Mayo clinic! I am a teacher and my heart goes out to you worried about your son! Keep the faith, mama!

Hi Rhonda-I was scared too. I was feeling so scared because I have always been active and then my HCM got so bad that I couldn't walk even a few feet without getting winded. My family and friends were also scared and we all felt helpless until my cardiologist learned about Camzyos. All of the warnings and possible side effects were also very scary, but after doing a lot of research and finding this group, I decided to give it a try. It has been a miracle for me. It started working immediately for me. I feel totally normal, and am back to doing all of the activities I love doing. I started March 31st. I have also lost 13 1/2 pounds now that I have my active life back. There is hope! 🙂

I work 50 hours per week and take Camzyos I am 58 years old My doctor recommended the medicene over heart surgery because of the complications and the rehab needed after surgery the hardest part is that I am so tired and unmotivated its hard to get anything done

Good morning Whidbey-I am a teacher too! I teach 4th grade. We go back Monday, and the kids come the 21st. Have you started school yet? I hope you have a great school year! 🙂