how much is too much?

[ChristineBP]

I'm new to this web site, and not very good with computers. I'm a runner in fact just yesterday I ran a 10 mile race in my hometown. It took me 1hr and 52mins. Of course I want to go faster, but I just can't. I had surgery 16 yrs ago at the Mayo clinic, I had my mitral and aortic valves replaced and my tricuspid repaired. I'm 29 yrs old I'll be 30 in Feb and I know I am soooo lucky. I'm a slow runner and I've been reading how fast some of you can run, wow!!!! I know I'm in heart failure right now but I refuse to give in to it. I see the doctor twice a year (once in june and again in dec) and I know I need to be carefull. I have heart rate monitors and blood pressure monitors and I take beta blockers and all of that good stuff. I love running and I love running races, I push myself soooooo hard. But I don't want to hurt myself. My doctors don't run, I don't think they work out (they don't look it). They tell me do as they say not as they do. I can understand that, But I don't think they even try to understand me. I just don't want to push to hard and not push at all. When do you say when?????

 

[Christina L]

All I know is that I wish

All I know is that I wish

I had your moxie! You are amazing and I admire you for what you are doing. However, that said, I would caution you a bit, but there are others on the board who run and exercise with their valves, and they would be able to advise you better.

I am kind of a "slug" myself - just walking on my treadmill and walking the dog.

Hope you will get some good advice here - know you will!

Christina L

 

[geebee]

I would like to welcome you.

As far as your questions - they prompt a few of my own. First, how do you know you are in heart failure? Do you have echo or cath results that you can share with us? Without knowing "numbers" it is difficult to say what you should or should not be doing.

Does running cause you discomfort? If your doctors know you run and tell you it is OK, then maybe it is. Exercise is important to a healthy heart but, if you have heart conditions where a higher BP is a problem, you may need to limit it.

If you can share some test results, we can help you further.

 

[ChristineBP]

To GeeBee

To GeeBee

Well, here is a little background on myself- I was a healthy child up to the age of 12. I had colds and ear infections and so on. The one problem I had was strept throat. When I was 13 my infection (strept throat) went undetected for a few months. From that it developed into rhumatic fever, (please forgive my very poor spelling) and then into congestive heart failure. My heart was twice as large as it should have been and I had fluid in and around my lungs. At that time I had mitral valve prolalpsy(once again sorry for my bad spelling) and more problems with the other two valves. My doctors at the reading hospital were not sure how to handle my case so they sent me to the mayo clinic in Minn. I had my mitral and aortic valves replaced and my tricuspid repaired. I've lead a pretty normal life, just going for pro-times. Just recently my doctors told me I would need to have my valves replaced, now instead of the valves being leaky the valves are not letting enough blood through. Stenois - if I spelled it right- the pressure in my heart is very very high, so now I'm on beta- blockers. I go for stress tests and ultra sounds twice a year but I don't have numbers. Last year my doctor told me 20 years is a good life span for my type of valve, I'm now at 16yrs, I can't play dumb. I know what is going to happen, when I first had my open heart the doctors told us (meaning my parents and myself) they would last forever. Now they know that's not true, which I understand. They want them to last forever but don't-they just didn't know that back in 1989 and that isn't anybody's fault. That's just a little about me!!!! What about you and or any one else!!!!!!!!!!!!

 

[OldManEmu]

Christine welcome aboard. By what you describe and the age you were when you received the valves the problem may be more related to the valves being of a size more suited to a 13 year old than a 29 year old. Often valves implanted in children have to be replaced when they grow into adults as they do not allow sufficit flow to service the needs of an adult body. As the pressures are very high I would suggest that strenuous exercise probably should be avoided until the valve issue is resolved. Hopefully you can get the valve problem resolved before the heart failure becomes permanent if it isn't already so.

 

[Curtsmum]

Forgive me if iam wrong but i have been told at 13 they can use adult size valves. That is why they wanted to wait untill Curtis was 13 before doing his surgery, he also has mitral stenosis.We was told his needs fixing within twelve months that will bring us to march. He is not on any medication what so ever. We was told he could carry on with normal activity, if only they knew how wild he is, he is none stop runs round like a wild animal constantly. Anyway sorry to waffle on. If the doctors say its ok, then it probably is, you may have to judge yourself when you have done too much. Curtis as 17 days left for his check up, then we should find out his fate, it almost feels like the christmas count down. Sorry didn't mean to waffle on so much about my problems. I wish you the best of luck for your next appointment in december, take care and take it nice and slow and easy untill you find out more.Paula x

 

[msiwik]

Welcome Runner!

Welcome Runner!

I see the doctor twice a year (once in june and again in dec) and I know I need to be carefull. I have heart rate monitors and blood pressure monitors and I take beta blockers and all of that good stuff. I love running and I love running races, I push myself soooooo hard. But I don't want to hurt myself. My doctors don't run, I don't think they work out (they don't look it). They tell me do as they say not as they do. I can understand that, But I don't think they even try to understand me. I just don't want to push to hard and not push at all. When do you say when?????

Hi Christine: Welcome! I marvel at your spirit and tenacity. There are some members to the site that understand and can help acclimate you to the literature/information about what you can do athletically in your situation. If I recall correctly, there was a medical conference several years ago that prescribed with precision what you could do with certain heart conditions. Hopefully, somebody will post a link to it. And for the doctors, their lack of knowledge/participation in our sports is a source of frustration. Keep us posted. Mark

 

[BillCobit]

If I recall correctly, there was a medical conference several years ago that prescribed with precision what you could do with certain heart conditions. Hopefully, somebody will post a link to it.

Ya mean this one?

http://www.acc.org/clinical/bethesda/beth36/index.pdf

 

[msiwik]

Thanks Bill

Thanks Bill

Ya mean this one?

http://www.acc.org/clinical/bethesda/beth36/index.pdf

That's it - now I have it bookmarked! Hope you are well Bill. I have made some adjustments, limiting my "hard" running to every other day and the early signs are good. I think there is a chance I can start dipping below 10:00 min. by Christmas. I also no longer use the word "training," opting instead for recovery at least until next May. Regards.

 

[Curtsmum]

Ya mean this one?

Well, i can't get it to work, clicked on mitral stenosis and i wont do anything? then again could be me, im no computer wizz

 

[geebee]

I would only be guessing at what is causing the stenosis. Maybe the theory that the St. Jude valves are too small for your current needs is correct. As you have learned there are things that are learned every day in the heart surgery world. Today they may use larger than needed valves for a 13 year-old so they will function in an adult. Again, I am just guessing.

If you heart is not pumping the blood properly, I would be cautious with heavy aerobic exercising. I think running might be OK if you do not push for a 4 minute mile. Your cardio will still be the best person to discuss your limitations.

Do you know when they are planning on replacing your valves again?

 

[LLJ]

Welcome! Here I go with my two cents. If you are truely in heart failure you need to see your doctor. Learn your numbers,research what they mean and know you can always come here for informed and encouraging info. Running is admirable and we all (runners,bikers and swimmers) understand the mental strength it takes to push when your body is refusing.....BUT do not push your body to prove something to your mind!. You are so young with so many races ahead of you. Please seek an opinion you trust. I'm sure there are some members from your area who can reccomend a good Doc/surgeon. Please take care of yourself and realize your personal best is yet to come.Hey valvers: got any names for our new friend???
Laura

 

[ChristineBP]

It is so nice to hear from so many different people who have the same questions and problems that I do. Sometimes I think that because I'm younger that I do not need to take precautions. That is very silly of me and I know it. On the other hand I wonder if my doctor is truly taking the time to see if we are treating me as a patient or am I more of a bother. I know he has other people to take care of and he is my 3rd heart doctor (my others retired) and he is younger then my other doctors. I guess I'm more demanding as a patient. I question his actions and want to know why and how things are going and he is very up front with me. Telling me he is not sure and just to be careful. Sometimes that is not enuff, I want things to be explained to me. Thankyou to every one-it is so nice to be able to talk and for me learn about all the great people who are facing problems just like mine. I promise to take it easy, I didn't go to the gym today so that makes 2 days in a row that I did not go. That does not happen often. Hope everyone is havng lots of good times and smiles!!!!!!!

 

[M&M]

Hi ChristineBP, welcome to the board. I happen to stop in on the board and I saw your post. I think you want your doctor to give you some guidance on running and what is the max you can do and still be relatively safe. I've often wondered that myself as a runner with heart problems. I've run many races and I've at times challenged myself beyond what any doctor could comprehend.

I recently asked my CHF specialist if racing was pushing my heart to much. Would it do more harm. He said: I don't know - we don't have many studies done with a person in my medical condition exercising at this capacity. I guess I'm a case study of 1. For me - I have a Heart Attack, ICD, mechanical mitral valve and now congestive heart failure. He thinks its amazing that I run at all. Or that I'm able to run at all. He does encourage exercise. But 2 miles for me is not the same exertion for others. I've been running for 10 years. So, I don't think the pace or distance is relative - I think over time I've learned I exert myself 'harder' at times and I need to back off. Of course that's hard to do in a race somedays. I don't really 'race' anymore. I go and participate and see my friends.. This year I've only done about 15 races. I've slowed down tremendously. I'm rather scared as to whether I should do races. But I'm in pretty good physical condition. Since I have days where its all I can do to get out of bed I'm not sure that I might be doing to much - even though I felt good at the time.. So, I'm trying to 'pace' my energy.. CHF is very up and down.

I can't tell you what's right for you. I can say if you have to 'ask' is it ok to do this - then maybe your alittle concerned that you might be doing to much. No doctor is going to give you permission. They just don't know and yet I don't think they want to say - yes or no. I have read somewhere that 'competitive' exercise is not recommended for cardiac patients.

Good Luck and happy trails..
Marilyn (runner) presently a walker/jogger and very pleased to still be at the races..