HCM-ers: Introduce yourself or just say hi

Hi @lopezland, You've been diagnosed with HCM. Seeking all that you can about how to take care of yourself is important.
You will see that I moved your post to a discussion you have previously commented in. I did this so that you can connect with and get the opinion from other people who have your same condition.
@lopezland, have you tried any adjustments to your diet yet? Can you share what you have tried?

If you have been diagnosed with hypertrophic cardiomyopathy could you explain any changes you had to make in your diet or lifestyle? Does anything you do or eat make hypertrophic cardiomyopathy worse/better?

My son is 15 And was recently diagnosed . He has an mri scheduled to help determine more things but could anyone give information as to what things need to be changed etc. He is on a No activity restriction until his mri; what about his diet. He has no symptoms.

Hi, @colleenyoung. As you know, I have been around the block for a while with this. Now I know that I have at least twenty-four genes that relate to cardiomyopathy, dilated and otherwise. Anyone with any serious issues in this area should invest in a whole genome analysis by Nebula or Sequencing or other Genetics group, and learn your own list. Then take it to a geneticist for further interpretation. Frankly, that is the surest way to knowing whether yours is genetic, disease or something else.

Thanks for sharing and I was scheduled for surgery last month, but it had to be postponed for a few months. Dr Schaff actually called me to talk to me about this! I was very impressed and feel blessed to have him as my surgeon! Thanks again for sharing! I appreciate it very much!

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. 🙂

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!

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.

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!

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!