Bodybuilding and HCM

[harryandleanne]

Hi everyone

What a great site this is. My boyfriend (Harry- 54 years old - diagnosed 11 years ago - 2 direct family members passed away from HOCM) has HOCM and is going to have a myectomy in approximately 5 weeks time. He has been bodybuilding (contrary to what he has been advised to do - apparently weight lifting is very bad for this condition ) and keeping himself in shape for 20 years. What he is wondering is .....is there anybody else out there who bodybuilds and has had a myectomy and what was the capacity for exercise after the operation. Harry suffers from extreme breathlessness during particular exercises (ie leg work) so limits himself on what he can do, but still pushes himself to get results (within his limitations). Hope this makes sense and someone has had similar experience. Also would like general information on how long under for the procedure, recovery time etc.

Thanks
Harry and Leanne

[Reenie]

Hello and welcome to the HMCA. As you already know, bodybuilding and weightlifting are contraindicated in HCM. I'm not aware of any of our members who are bodybuilders, especially those who have had or need myectomies. Does he have an implanted cardiodefibrillator? With 2 family members who have suffered sudden cardiac death he most likely qualifies. I hope that we can help you with your questions. Please refer to our search engine where you can find a lot of information on others' experiences. You might want to also look at progers's experiences as he just underwent myectomy in Melbourne 2 weeks ago. He had some unexpected complications that are very unusual, but I'm sure he would talk to you if you are interested. I'm sure others will join in this conversation soon. Best of luck.

Reenie

[harryandleanne]

Hi Reenie
thanks for the quick reply. Harry has had 2 defibs in, one got infected and the other one was kicked out f his chest by his 18 month old neice and for some reason "they" can't put one back in. He's an interesting case becuase he was told to give up gym work 11 years ago and was not expected to live more than five years after diagnosis. He's now been told to keep doing what he's doing, because it seems to be keepinghim alive. He looks a picture of health and people can't believe he has a heart problem (I, of course know to well he has as I'm with him on the bad days). He was first advised to have a heart transplant but is going with the myectomy option, its great to read the experiences of others as most seem very positive. What's the average time a myectomy takes (ie how long are people usually under the GA?). Not sure why he wants to know this, I think its because anaesthetic makes him very ill.

Thanks
Leanne (on behalf of Harry)

[progers]

Hi Harry and Leanne,

Sent you guys an PM but forgot to mention a couple of things. I was told that my surgery would take around 3 hours, but it ended up being 6. So I was under GA for quite a long time - plus I had to go back in for surgery a second time. Second is that the recovery period varies, but I have been told I cannot go surfing for around 3 months. I also plan on being off work for 6 weeks (i.e. around 4 more weeks). But I am still very weak right now so its hard to tell.

There is no doubt about it - the myectomy is a big operation. But there are people out there who seem to sail through it for some reason (look at past posts to the Board). I am only 35 and fit, but I've had so many complications and this has made my recovery very difficult.

Where do you guys live and who recommended Harry have a myectomy?

Cheers,

Paul

[harryandleanne]

Hi there Paul

So sorry to hear about your complications, but yes, no surgery carries a guarantee and anything can happen....really just getting a general idea.

Harry and I live in Adelaide and Harry's cardiologist recommended the myectomy as Harry has been going downhill badly in the last year , mostly his breathing, but more lately quite severe probs with nausea. He's such a fit and positive person, nobody ever believes he is sick (I notice thisis a common theme amongst people with HCM - its hard for people to beleive what they can't see. We were recently in Emergency and one of the doctors was almost rolling his eyes and smirking......grrrrrrr (once in the cardio ward people understand).

Please stay in touch Paul and let us know how you are going.

Our thoughts are with you, and positive ones at that

Leanne

[progers]

Hi Leanne,

Nice to hear from you. I was the same - people would look at me and couldn't believe I had such a serious heart condition. I'm pretty young (35), surf all the time and used to work out, but had to give up working out with weights because of the same kind of problems Harry is having.

Where exactly is Harry having a myectomy? I assume you are aware that the expert consensus is that patients should only have the surgery done at an experienced centre? Peter Skillington in Melbourne is the only surgeon I know of in Australia who has any experience doing this surgery at it is so rarely done.

If you need any advice on all this let me know. Hopefully I will start feeling better soon - its been slow going so far, but people tell me that I am only 16 days since the surgery and should give myself a chance.

I would also contact the HCMA for more information if you need. They (and Lisa Salberg the President of the association) are THE best source of information anywhere. Lisa in particular is not a doctor, but probably knows more about HCM and HOCM than most cardiologists. The average cardiologist does not see that many HCM patients!

Good luck again with everthing. Believe me I know what Harry is going through.

Paul

[harryandleanne]

Hi again Paul

Harry is having his appointment on April 21 with his cardiologist to discuss the details. I suspect the person you mentioned may be the guy doing it, as the cardiologist said there is only guy who can do this op.

I am going with Harry to his appointment. We have only been going out for approximately one year and in the past Harry has buried his head in the sand over his condition. Old bossy britches here is making him learn more about his condition and the wonderful thing is, at least now he does have some hope. He had always beleived he was just waiting for "the inevitable". All I know is that Harry's form of HOCM is considered rare and in the past he was considered inoperable and told transplant would be the only option for him. When you all talk about gradients, I don't know what that means, but I hope to find out when we go to the appointment together. I have tried to learn as much as I can.

Harry asked me to thank you Paul adn would like to stay in touch with you. He's not very computer literate but while he's in recovery, he will be staying at my place so will have access to my computer, perhaps you could chat to each other. Harry is very much looking forward to the procedure, anything to relieve his breathing problems, if nothing else.

Thanks for everything Paul

Leanne

[Reenie]

Hi Leanne. I think maybe you should also send Kelly or Lisa (on the first page of the memberlist) your address and they can send you an information packet on HCM. It will help both of you better understand what he's up against. Gradient is a term that refers to the pressures in the heart due to the obstruction and the blood being unable to flow properly. I think if you can make a call to the US and speak with Lisa you would gain a great deal of information. I understand the problems with time differences and such, but I think it would be worth your while. There are so many things you should know before you proceed. Make a detailed list of questions you want to ask the doctor when you go and keep it in your purse so you don't forget it. We're glad to have you here.

Reenie

[harryandleanne]

Thanks Paul and reenie I am learning a bit more every day thanks to this site, and what I learn I pass on to Harry. Have others found some doctors and nursing staff very patronising? Most are really good but we've come across a few who make us feel like we are wasting their time, a tad frustrating. I guess its because they don't understand the condition. Paul do you have to stay on all your medications after you've recovered or do they hope to get you off of them. The Warfarin is probably the worst one Harry takes and he's hoping he can stop it after the op. It must be such a struggle to hold down a full time job Paul, I don't know how you do it.

Anyway here's me signing out for the night

CHeers All!!!!
Leanne

[Reenie]

You're very much right when you say some doctors seem patronizing to HCM patients. It's unfortunate, but since they can't see the problem like you can a broken arm, they don't realize the complications and symptoms some patients have from HCM. I think most people who have undergone a myectomy reduce their medications, but I think most still take some type of meds.

I have a few questions for you. What does Harry take warfarin for? Why did they tell him he was inoperable and could only have a heart transplant? Does he have an obstruction?

Reenie

[harryandleanne]

Hi Rennie

Harry's on a few medications, the ones I know of are Warfarin, Atacand, Aratac, Rani 2. The Warfarin is to thin the blood. (his blood is like water) When Harry was diagnosed, he was told by a rather charming cardiologist "you are going to die" and until very recently Harry was lead to believe it was a matter of waiting until the blood supply to his heart was completely obstructed, have a massive heart attack and die. Thankfully he has a great cardiologist now. Yes, he has obstructive HCM. Until I have been to his appointment with him, I know very little of the "mechanics" of his problem and why he was considered inoperable. Before I went out with Harry I had to really think about whether I could get involved with someone with a problem of his magnitude because at the time, we believed there was no hope for him. As I got to know him more, and realised how well he had coped with his problem and what a truly great guy he was, I was hooked lol and every minute I spend with him is more than "worth it". In the past he has lost relationships because of his condition and the way it controls his life, their loss, my gain

Leanne

[Linda]

Leanne and Harry, Welcome. Glad you've found us and delighted you've found each other! Wishing you the best as you move forward thru this next big step. Linda

[Burton Borrok]

Leanne,
You’ve got class lady. I think Harry is the lucky one.

No, let me take that back, I think you both are very, very lucky to have found each other, and you both demonstrate a world of class. I look forward to you guys gaining control over all the problems and living long happy lives together.

I am also very glad you found this site and us. You really cheer me up when I start to see too many dark clouds and I’m sure you do the same for many others. Anything we can help you understand or explain, well you just post away. You’re our friends next door – even if you’re half a world away.

Now let’s all go looking for that brighter tomorrow that’s out there someplace just waiting for us.
Burt

[harryandleanne]

Thank you Burt and Linda

Burt, what a co-incidence on the timliness of your post. I had been talking about you to Harry on our walk the night before. He had asked me in the past why I thoughht it had taken so long for him to be diagnosed (he's 54 now and was diagnosed when he was 43). I told him about your situation (displaying classic HCM symptoms and not being diagnosed until you were 71). He remembers going to a doctor as a teen saying he was always short of breath and the doctor saying "there's no such thing as being short of breath".

As much as technology drives us nuts at times, how good is it, to have a wealth of information at your fingertips, not to mention the support/encouragement/advice of people who are going through or supporting someone through this. Its sites like this, that make the net a wonderful place to be.

Leanne

PS I hope Paul is doing ok, anyone heard?

[Reenie]

I'm glad you're here with us and we can help you through this journey. It seems you were both waiting on one another. I'm pushed for time right now but I want you to know you're in my thoughts as you go through these hard times.

Reenie