HCM-ers: Introduce yourself or just say hi

Thank you, I appreciate that!

Hi every one nice to meet yall here.

I really enjoyed reading all the positive things you,ve done, probably bcuz after leaving corporate I followed a lot of these same steps. Very refreshing .

I started avoiding processed foods, sugar, flour, white rice. Bought a fit bit to keep track of my steps, and started walking on a treadmill, gradually increasing speed and incline. After retirement it was easier to eat right and exercise, and I focused on getting my 10,000 steps in. I now walk at a 7.5 incline at 3.0 miles per hour, do 30 min to 60 min on treadmill daily depending on how active I am, always try to get that 10,000 steps in. 3 months ago I started doing yoga on line, and presently am on a 30 day challenge with Adriene (who is my favorite so far) I've lost 30 lbs and now weigh 135. I'm 5'6". I have a horse and ride a lot, I have been told this is not a good idea due to Eliquis, but I've told my PCP and cardiologist that I understand the concern but I accept those risks as I'm no longer competing, I'm not doing high risk activities with the horses and my horse is very solid and well trained. Getting outside and riding has helped my sanity and I live in a rural area. I've been cooking and trying out healthier recipes and really watching that salt intake. I weight daily and have prn Lasix for 3 lb wt gain, but have not had to use it. I think that the daily weight and recording that weight has helped keep me on track more than anything as it keeps me accountable before things start to spiral. I also feel better than I did a year ago.

Hello @d1956 and @doug57 -- Welcome to the HCM group here on Mayo Clinic Connect. I would like to introduce you to some other members who have also been diagnosed with HCM, like @karukgirl @ronaldpetrovich @PatMattos @lisa7 @yurkosolhan @bbonchek @lailaamin @mosiac @rrowner2 @mbcube @debcrawford

@d1956 Retirement keeps one busy doesn't it? I'm glad that you took the time to introduce yourself. Can you tell us more about the lifestyle changes you made?
@doug57 Welcome also to MN and Mayo Clinic. How do you like living in the midwest? Do you have any questions about HCM Clinic at Mayo?

Hi, thought I would take a moment and introduce my self. I was a long time HCM patient at Johns Hopkins in Baltimore. Key people in that program left to go elsewhere about the same time I had to move away from Maryland. Now I make my home in St Cloud, MN and I am happy to be a recently established patient at the HCM clinic at the Mayo Clinic. I had a myectomy surgery in 2010 and also have an ICD.

Hi, I joined last year but have been slow about introducing myself. I'm 63 years old, diagnosed with HOCM May of last year. I retired the end of May, had it planned and notice given prior to diagnosis. i see cardiology every 6 months due to moderate to moderate to severe mitral valve prolapse and electrophysiology yearly since I had SVT when I was diagnosed. I've made some healthy lifestyle changes, and echocardiogram didn't show any changes in six months. Now that Cocid-19 is here I find I have more time to go to the forum, and find it helpful. Thank you for this online community.

Hello,
Thank you for your response! You are correct. It was super stressful making the decision to postpone. I was packed and as ready as I ever would be to go. That was Monday, here we are today Wednesday, and the White House is strongly urging all hospitals to cancel elective, non-emergent surgeries. So it was the right choice. Things change hourly it seems! I do feel like it was the right thing to do and listen to what the President is urging ALL Americans to do...to cancel all non-essential travel, stay home if you can, and not to lose hope or freak out. We will get through this.
I recognize that I would have been consuming a large amount of intensive services, using lots of PPE and taking up space that an unplanned critical patient may need. That is a greater cause.
The Mayo cardiologist I saw, Dr. Titus Evans, suggested to me that although I have a pretty big obstruction, that I am not critical, and to schedule as soon as was possible. I don't think anything has changed since he told me that in December, heart-wise, so I'm not afraid that postponing until July or August will risk my life. But I do think having open heart surgery during a Global Epidemic would!
As you mentioned, patients who've had surgery are more susceptible to infection. And it seems this is a highly contagious bugger.
I have not yet heard back from Dr. Dearani's scheduler, as he will be the "co-pilot" for my septal myectomy. Dr. Bagameri will be the pilot. This will happen when it happens. I'm so grateful to this community. Who but those who share this condition or have had surgery know what it's like?!
I feel like my issues are so insignificant compared to the suffering of others. It's easy to put things into prospective because this isn't all about me...this is an unheard of time in history. And we can and will overcome, it will take time and patience. I pray for the doctors, nurses, all healthcare workers, police, military, EMTs, all those who serve and protect us. Thank you for thinking of me.

Thank you kind Sir,
I feel better today about making the decision to postpone...it seems like things get a little worse everyday. Although the media appears to enjoy watching the panic in society. The world has gone mad! The sky is falling!
Hopefully when we get the official new date, there will be toilet paper available once again 🙂
I was more concerned about all the wineries being closed, so I stocked up on Chardonnay!
Thank you for your vote of confidence...I second guess myself all the time. It feels good to get confirmation. Meanwhile, the waiting game continues...

Hello @karukgirl,

At a time when life isn’t normal in any sense of the word, I think your decision to postpone the surgery is commendable. I can imagine it’s a hard choice, but look at it this way: you’ve taken significant steps towards “flattening the curve."
By following current guidelines, you are allowing doctors and your health care team to prioritize and make the best use of medical resources for the more critically ill patients, and you are reducing the risk of coronavirus spread––patients who’ve had surgery are more susceptible to infections.

Still, knowing you have a condition that needs to be fixed and can be fixed, but not at the time it was scheduled to be fixed, can be incredibly stressful! Have the doctors explained whether postponing the procedure will or will not affect the ultimate outcome?