New diagnosis difficult to accept/adapt

[neverhart]

I just finished a two day work up with Dr. Lever at the Cleveland Clinic. He was great. I have HOCM (2.2 cm, 44 yo). I have a birth defect with the angle of my heart wall and the papillary muscle that connects to my Mitral valve as well. Consequently when my pulse gets above 110, I have significant symptoms. Dr. Lever told me the toughest news of all.... stop my intensive exercising. This was devastating. I have enjoyed all forms of sports most of my life... football, wrestling, basketball, cross country skiing, aggressive down hill skiing, cross country skiing, bicycling (fast!), etc. I had hoped to continue this lifestyle into my 80's. What does one do with this? I have so much fun playing all of these activities. They are more fun to me than golf and bowling and chess. (I do like those activities too, just not as much). My doctor told me that surgery may help my symptoms. Have any of you had the surgery for the purpose of returning to aggressive exercise activities? Am I nuts?

Nathan

[Reenie]

Re: New diagnosis difficult to accept/adapt

Nathan, you aren't nuts but you do need to slow down a bit. The surgery won't be a green card to return to your prior activities. Even if your obstruction is relieved you still have HCM and are more prone to electical problems because of it. It won't be easy, but you will need to relearn how to entertain yourself. You can do less vigorous involvements with your sports such as coach or you can take a turn for something else and get more into golf, art, walking. Anything that won't be a stressor for the heart. I'm sorry you're having to deal and adapt to this. I'm glad you talked with Dr. Lever. He's a great guy and he'll give you valuable guidance.

[mbcube]

Re: New diagnosis difficult to accept/adapt

Nathan - I know what you must be thinking. I too was depressed to think about what my future life would be like. I'm at the gym every morning at 4 am & have gotten into a good routine in my life. I have not yet met an HCM doctor but I've met others (here on the site) who have had the surgery & they are still active. Maybe not to their prior levels, but they are active! and this gives me hope.
Discuss with your doctor, learn what is do-able, then get out there and do it. You might want to take a long hard look at why you like these activities, is it the competition? the adrenaline rush? the cold air? the outdoors? Somehow you'll figure out a way to enjoy the next 44 years.

[Cynaburst]

Re: New diagnosis difficult to accept/adapt

I have had a myectomy, and I am much more active than I was before the surgery because my symptoms have diminished. That being said, I was never into extreme sports, but I do go to the gym 5 times a week. I walk at a good clip, do light weights, bike, swim, etc. I just don't do marathons or sprints or play competitive sports. For me, it is fine, and it is better than before my surgery. I still don't feel able to be as active as a person my age who is a competitive athlete, but I can certainly keep up with the average moms at the gym.

[godmother]

Re: New diagnosis difficult to accept/adapt

Hi, Richard, who is fifteen and recently diagnosed with HCM is feeling the devastation of these restrictions also. He had an ICD implant three weeks ago, which has further restricted his movements ( as far as repetitive arm movement.)

As I have mentioned in other posts, he has played sports at the state level. Richard has been said to be one of the top athletic hopefuls in our area. He had to stop football (was being looked at for varsity in his first year) for his new high school, will not be trying out for his basketball team (expected to be the only freshman playing varsity), and can not play competitive sports with any of his friends. His athletic lifeline has been cut. His identity has been snatched. He struggles daily at school to figure out where he fits in now. He was also expecting an athletic scholarship to college.

I've just read your post to him. He totally relates to how you feel. I asked him if he had any advise. He asked me to mention that it was his understanding that just because you put in an ICD, or have an operation, it doesn't mean you should go back out and do all the old sports you use to.

Unfortunately, the ICD doesn't stop his blacking out. It will only be there for him if his pulse exceeds 214. A myectomy, even though he has 100 gradient with exercise, isn't needed at this time. He doesn't have any symptoms which warrants an operation. A myectomy gives relief from the symptoms of blockage, but does not change the state of the cells, which are in disarray.

Richard has already figured out that helping his football team with their drills, by throwing passes, is an activity that is safe to do. He also has been reminded that if he takes that to a competitive level (even in the backyard with friends) where he's quarterbacking with explosive movements, that he will and did experience dizzyness or blacking out. He also has been cleared to warm up with the varsity team for basketball this year. He is sorting all of this out right now. He won't do it perfectly, but, he fully understands that many young athletes never had the chance to feel devastated and frustrated in trying to redefine themselves.

[neverhart]

Thanks

Wow. These replies are all very helpful. Thanks Reenie, mbcube, cynaburst and Richard. To me, my post now seems reactionary. I feel like I am moving to a different place on this. What is really important to me? What are the trade-offs? When is compromise the right thing for me? These are the questions I engage without trepidation. Thanks for your support and input.

Nathan

[Sarah]

Re: New diagnosis difficult to accept/adapt

Dear Nathan,

You are absolutely not alone. Use the search function for the board (link is in red bar between New Posts and Quick Links) to find older threads about sports (you can search for basketball in particular or just "sports" or "exercise" or "activity", etc.) and you'll find some very in depth conversations about what we can and can't do and how we adapt and get through this.

My cousin is HUGE. a real bruiser. Every single person he meets says, "So, you play football?" And it kills him because he would LOVE to play football and can't. He's only 14, but larger than most grown men. I really feel for him.

Me: I'm a tiny girl who hates sports. But I feel your pain and I know that many HCMers are in the same boat on this topic.

The HCMA can give you a lot of support around this.

Hang in there. You don't have to learn to love golf--you may find things that make you happy that you never before thought about!

[neverhart]

thanks Sarah

Thanks Sarah. I will check out the search feature. This input has all been very helpful. I am encouraged.

[Sarah]

Re: New diagnosis difficult to accept/adapt

You're welcome.

Keep us posted!!!

S

[adpsmp]

Re: New diagnosis difficult to accept/adapt

Nathan - ya just never know. Today I posted news about an elite marathon runner dropping dead at mile 6 - We'll have to wait for the results of the autopsy to see what the cause of death was - but, one of the reasons I gave up "fun" exercise is because if it can happen to an elite athlete, what about us mortals?

How's your adjustment going?

Andy P

[neverhart]

Re: New diagnosis difficult to accept/adapt

Andy,

In regards to adjustment, good days and bad ones. I am realizing each new day about activities which I cannot do.... mowing the lawn. Raking leaves. Working on the family Christmas Tree farm. Wrestling with my kids... etc. Am I just supposed to sit and read books and watch TV? These are the tough questions. I know things could be so much worse, so to some extent, I remain thankful. Trying hard to avoid pitty parties.

Nathan

[mtlieb]

Re: New diagnosis difficult to accept/adapt

Nathan,

You're at least handling your diagnosis much better than I did. I was a basket-case and thought surely I was gonna die at any moment. Giving up the strenuous stuff is tough (I lost my whole career in the deal) but on the other hand don't just sit and read and watch tv either. You'll lose muscle tone and get fat like I did. I was afraid to do anything for fear of dropping over. With time (and it takes a lot) you'll find a suitable compromise.

I've started to do a lot more things I had previously thought were forbidden for us. I imagine some folks might cringe at some of these things, but I'm sure as heck not going to sit on my couch all the time feeling sorry for myself. That's no way to live a life. I'll never be 'that guy' I once was though. It's a tough pill to swallow, but we all gotta do it.

Hang in there, it gets better.

Jim

[cschlatt]

Re: New diagnosis difficult to accept/adapt

This has been the hardest part for me. I ran 2 miles a day and had always been really active in dance since the age of 4. I loved to push my body to the limit and released anger through exercise. (I could also eat anything I wanted). It has taken me a few years to accept it. I am now at a much better point and have realized what some of my other talents and interests are. I have to say that I'm also a much more focused, balanced person.

As far as my daily routine, I walk my dogs everyday and have begun yoga and soon meditation. I probably walk the dogs 1 or 2 miles.

There are still those days when I say to myself "I can't believe this happened to me". But I will have to admit that HCM has made me a much better person and I appreciate everyday.

Best to you,
Caroline

[mbcube]

Re: New diagnosis difficult to accept/adapt

My old cardiologist said I could "continue weightlifting, just don't strain or hold your breath & since my HCM hasn't killed me yet, its not likely to."
He's never had an HCM patient, mind you. I went to his Associate for surgery advice - His department's only done 12 Ablations & no Myectomys (I didn't even inquire about his experience personally).

I changed insurance & had to start back at the starting point & my new cardiologist who said "I hope you have your affairs in order as you have a high probability for sudden death. I know you’ve learned a lot over the internet & you’ve met with 2 cardiologists so far so I know this shouldn’t be news to you. I want to be sure that the others put in perspective just how serious this is. I’ve only have 2 patients with this in my twenty five years as a cardiologist and you’re the second patient. I am recommending you to UCLA and I am asking them to install an ICD (defib)”.

Then he said NO weightlifting, No cardio, No kickboxing, No ANYTHING until they check me out at UCLA. While this was not a suprise, I wasn't expecting it to be a complete shut-down of everything! Postings here (and emails) give me insight and hope once I get things "taken care of," that its not as bleak as I thought & I just have to learn & adapt.

[FunDave]

Re: New diagnosis difficult to accept/adapt

Nathan,

Being diagnosed is not easy. Before my diagnosis in February of this year, I was extremely active - beach volleyball on the weekends, weightlifting, and biking (I was actually in training for the 50-mile Rosarito to Ensenada Ride when diagnosed - that is a blast). And after every bike ride, drinking margarita's on the patio at Cantina Real in Hermosa Beach. I had zero symptoms, and still don't. I was diagnosed after my first stress EKG, which I took during my routine physical after turning 40 (I'm 41 now). The abnormalities there led to more testing and finally the diagnosis no one wants to hear.

I haven't handled it particularly well. My Cardiologist (not an HCM specialist, but very good) has me on a drug regimen (calcium-channel blocker, beta blocker) that has my resting heart rate down to about 45-50 bpm. I can now do cardio as long as I keep my heart rate below 130 bpm. The same elliptical workout that used to get my bpm up to about 142 now tops out at 90-95 due to the drugs. I still feel absolutely no symptoms - I did a 50 minute elliptical workout tonight. No shortness of breath, light-headedness, etc. Seriously thinking about doing the Rosarito to Ensenada in April, but then Shay goes and dies and makes me re-think it.

I haven't yet re-started a weight-training regimen. Some of the Doctors at the HCMA annual meeting said light weightlifting is fine - guidelines are you should be able to talk comfortably during the lift or you should be able to lift the weight continuously for 3 minutes. I'm looking forward to starting this up but want to visit Minneapolis or one of the other centers of excellence first just to make sure I don't end up like Shay (the marathoner). If you have the means and opportunity to attend the meeting this year, I highly recommend it. I learned a ton and met a lot of great people.

Overall, I'm not really afraid of death - what is much more scarier to me is not living life. I still haven't really figured out what the balance is for me. I'm single, with no children, and led a very active lifestyle before the diagnosis. It really did feel like my life was over when I was diagnosed.

I recently began seeing a Psychiatrist to help me handle this better. Though it's only been 3 sessions, I feel much better about where I am and hopeful that I will feel better about the future.

Hope this helps. You're certainly not alone in this.