New to list, questions re; mech valve

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S

stevewbme

Hi,
New to this forum, I just posted a thread to the Coumadin forum and I also have some questions for this group. I am 48, had a Ross Procedure in Jan 99'. My aortic valve is failing and will have to have it replaced sometime in the next six months.

It seems that my only option is a mechanical valve. How bad is it to have this? I have an "active" lifestyle, sailing, travel and love biking. Will I have to give this up?

How loud is the valve noise? I am a little neurotic and worry that the clicking will keep me up at night. Is this crazy or what?

Thanks in advance for any help.

Regards,
Steve
 
Hi Steve-

Welcome to this wonderful site. Everyone here is very friendly and we all understand what you're feeling most of the time.

My husband has had 3 open heart surgeries. He has 2 mechanical valves and just had a repair on his mitral. His aortic valve was implanted 1977, so he's very used to it. And the clicking of the two valves don't bother him at all. He doesn't even hear it any more.

As far as Coumadin, that's really no problem. He hasn't had any problems related to it.

You may be encouraged not to do activities which could cause you to bleed in a serious manner. But I think you will find that the young men who have mechanicals are just as active as they have always been minus the contact sports.

My husband is 70 now, but after his 1977 surgery he continued to exercise just like he did before.

I'm sure that others will come along and tell you that living with mechanicals is OK.
 
Hey Steve - welcome to the site. You will find answers as the days goes along. There is much here about valves and exercise after, but I had bypass and can't answer. As to the noise, you will become used to it as time goes on. I live not far from a railroad and never hear the trains. Got used to it within a month. And, further, when you hear your clicking, you will be assured all is well in there. God bless
 
Hi Steve,

Welcome to the site!

I had emergency surgery for an ascending aortic dissection, and woke up with a St Judes mechanical heart valve. That was almost 2 years ago. I was 49 at the time.

I consider myself to be very active. I boat, snowmobile, hunt, fish, water ski, exercise 5 days a week, (cardio and weight lifting)and travel extensively,(mostly business realted).

I am on Coumadin, and have had no problems with it. I do have a home monitoring unit to check my INR/protime blood levels, and highly recommend it.

The only thing I do differently now is try to avoid high contact sports. If you are on Coumadin, you want to avoid hard hits to the body or head. I have also slightly changes my diet, I just don't eat as much salads, or certain other vegatables.

Hope this helps. I know there are alot of stories out there about Coumadin that can scare the pants off ya, but I think most of these stories come from elderly people that do not manage their Dose, or either forget to take their Coumadin or take too much.

Regards,

Rob
 
hi steve!
where did you have the rp done? st. francis? who did it? my dad had a mechnical st.jude's valve put in 2 1/2 yrs ago by paul damus there and is thrilled with it and him. he lives in great neck (where i grew up in my teens) and i'm sure would be happy to talk to you if you wanted to.
he doesn't seem to mind the coumadin at all and says that although he can hear the clicking, both he and my mom are very used to it.
please keep us posted... good luck,
sylvia
 
Thanks for the information

Thanks for the information

Thanks to everyone that responded. I had my Ross Procedure done in New York city at Beth Israel (South). My surgeon was Dr. Paul Stelzer who is excellent.

I will keep the list posted as things progress. Thanks for your support and encouragement.

Regards,
Steve
 
hi steve!
wow!!! that's upsetting... let me ask you, why is your valve failing? is it leaking or calcifying or something else? my husband, joey, had his rp done by dr. stelzer at beth israel south as well. he will be 4 months post op in a week.
how did you know that something wasn't right? were you symptomatic or was it just a routine echo or other test that detected this problem? who is your cardiologist out there?
i hope it all works out ok. please keep us posted.
-sylvia
 
My husband had two St. Jude's implanted in October.

His hearing is not good, so he has NEVER heard the ticking. Everyone who tries to hear it does though. It is this very light little click. When there is any background noise, you can't hear it at all. Also, sometimes when he walks up the stairs, it clikcs a wee bit louder. It is not at all bothersome. I love the sound. Next to the breathlessness he had, both awake and sleeping, I find this sound to be similar to Mozart in quality. Good luck - Marybeth
 
In reply to Sylvia RP question

In reply to Sylvia RP question

Hi,
Well, looking back I started not feeling as good as I had been in late October, which was right before I had a yearly echo.

The echo test revealed that my aortic valve was leaking (3+- moderate to severe) and that my heart had enlarged to the point where it was at 6 months after the operation.

I see Dr. Stelzer this Weds. and my cardiologist on Thurs.

There are many people who go on with no problems, the odds are in your favor (after 10 yrs, 80% of RP patients have had no problems).

Take care and regards,
Steve
 
hey steve,
please let us know what dr. stelzer says and also what your cardio has to say. who is your cardiologist? is he/she out there? where on l.i. do you live? i grew up in great neck (from age 13 on) and my parents still live out there. my brother lives in old westbury.
i hope all goes well on wed. and thurs. please let us know.
good luck and be well,
sylvia
 
In reply to Sylvia

In reply to Sylvia

Hi,
I live in Merrick, on the south shore of LI. My cardiologist is Dr. Philip Stein who has an office in Garden City. I lived in Great Neck for a while in the early 70's help babysit a girlfriend's parents house on Merionlees (spelling?) Circle.

If someone doesn't mind, is it possible that I speak with them directly on the phone (my nickel :) ) I still have some questions about what its like to live with a mech valve. Thanx.

I will keep everyone posted. Thanks for your support.

Regards,
Steve
 
Update after doctors visits

Update after doctors visits

Hi,
I saw my Ross Procedure surgeon (Dr. Stelzer) on Weds and my cardiologist yesterday. Two different opinions:

Dr. Stelzer said that yes my aortic valve (formerly my pulmonic) valve is leaking more, but my heart seems to be tolerating it fine. The changes in the dimension of my heart are a millimeter over two years, not bad, at that rate he thinks I should go for a long while before I see him again before he reoperates. It turns out that my mitral valve is leaking more as well and that I will probably need to have that replaced as well.

He said that he would be surprised if he had to reoperate before 5 years. My heart has gotten a little larger but is beating slower and pumping more blood, probably due to my bike riding as I have really been into mountain biking since this past May. Overall he was very upbeat.

My cardiologist, on the otherhand was pessimistic, said that the bottom line was that my last echo showed a 3+ regurgitation and that this was a big problem. He said that he would be surprised if I made it 5 years. Wants me to have another echo in May.

Well I was feeling pretty good about things Weds afternoon, and then not so good Thurs afternoon. I guess the only thing is to plug along, try not to stress too much and try and enjoy each day.

Regards and thanks to all.

Steve Weiss
 
Your cardiologist has obviously taken a very conservative approach. That's good that he's going to follow you closely with the echoes close together.

Best wishes
 
hi steve!
i agree with nancy, i like the idea of a somewhat conservative cardio and echos close together. please keep us posted as to your condition. i'm so sorry you have to be going through this again.
be well and good luck,
sylvia
 
I have a mechanical aortic done in '00 to replace a porcine done in '89.
I notice the following. The clicking is loud for many months after surgery and you just get used to it eventually. I hear it but it now is part of me and so doesn't keep me awake anymore. It does make you more aware of the heart beats and if they become a bit irregular for a few seconds it still can freak you out. It took a little over a year for me to have a real regular INR and now it is very consistantly in range, and I adjust my own dose with doc approval. I think I am not the same as I was with a porcine, but this could be that I am older (47) and maybe being on warfarin does change the body somehow. I seem to have less energy, but I take a drug to lower bp as my mitral valve leaks so maybe that's it and not the warfarin or the mech valve at all.
I bruise very easily,, and usually have at least one 3" bruise on my butt or hip! Just from hitting things around the house or when washing the car and that sort of thing. I gave up skiing as I decided it was too risky.
But, like you it was my 2nd surgery and so had no choice but a mechanical.
 
Mechanical Valves

Mechanical Valves

Hi Steve

I just read your origial message and those of the friends here. I'm sorry to hear of your troubles and can understand how you might be feeling. Having gone through 4 heart surgeries (2open and 2 closed), it's disappointing if things don't turn out 100%. It can leave you feeling quite low. But,  we have to make the most of the health we have and enjoy each day.

It sounds like you have excellent doctors caring for you. I have emailed with Dr. Stelzer directly in the past and he seems really nice.
In October 1998 I was given a CarboMedics mechanical aortic valve. I'm taking Coumadin (Warfarin) and like you I was concerned about having to giveup certain leisure activities. However, this has not been the case. Since my valve replacement I do more mountain-biking than ever before. In fact I have recently treated myself to a new Scott Team Pro fully alloy Mountain Bike. I have done rock-climbing, swim alot, abseil, travel alot...etc. When I first had the valve I felt a bit nervous about the 'ticking' sound and living alone it worried me for the first couple of weeks. But, I adjusted so quickly and now don't even give it a 2nd thought. Most the time, when I'm at work, driving, shopping, visiting friends etc, I don't even notice it. When I'm at home and it's quite maybe, I do hear it. But, I actually find it quite restful. It's part of me now and it's fine! I do have a tiny, tiny leak from it, but the cardiologist has reassured me that it's trivial and that it hasn't got an worse in 3 years and he doesn't expect it to either. I think, like with alot of these wonderful heart surgeries, it's rare to get a compete 100% success. Although it's the same procedure, we are each an indvidual and the surgeons do the best they can.

I hope you continue to do well and enjoy life and your mountain biking.

Incidentaly, I have visited Long Island for a holiday as I have friends who live at a place called Wantah (sp?). I love the place.  I actually live near London, Great Britain.

Well, take care and keep well.

Jonathan (age 34)
http://www.braveheart.eurobell.co.uk
 
Braveheart - Thanks

Braveheart - Thanks

Thanks for your encouraging words. I'm being closely watched, echos every 6 months (next one in May). I'm hoping to go awhile before I need another surgery. Thank you for letting me know about the trail riding, I really love doing this and would hate to have to give it up.

Warm regards to you, and wishes for continued good health.

Regards,
Steve Weiss
 
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Dear Steve,

I just had a mechanical valve put in for the same reason; my Ross was failing. I had the Ross done Feb 5 1996, and the mechanical Febuary 5 2002. Five years to the day!:rolleyes:

I am feeling pretty good I suppose, considering my other existing health problems that began after intial open heart.

I was being pro-active as I was asymptomatic when I had the first. My logic was we had good health insurance, my hubby has a good job.....but, these days, who knows?!
So, I opted for the surgery.

To be honest, I realize it is early to discuss any issues with coumadin, but if I had to do it over again I would have gone for the mechanical...knowing the facts as I do today.

Oh well, live and learn.
My bitterness stems from the fact that I had two contraindications for not having thr Ross, and someone did not do their homework.
As I result, my life has been totally altered, as I cannot work.

I do not want to bore you silly, and whenever I post my "negative" story..I ? if I should be doing this.

Tahnks, and good luck.
I will be thinking of you.
Carole
 
Wishing you a speedy recovery!

Wishing you a speedy recovery!

I'm glad to see that everything worked out with your latest surgery. I have a reprieve for now, they are watching me closely. I wish you a speedy recovery and continued good health.

Let us know how you are making out from time-to-time when you get the chance.

Warm regards,
Steve
 
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