Valve Questions

[Jed]

Hi all. I have just started viewing this site and love it and you all. I have just been told that i have to have my mitral and aortic valves replaced. Not really into the surgery but what can you do right? I have had hodgkins disease 3 times and am in remission right now. That is not related but thought i would throw that in, lol. I am fighting with my decision on what type of valve to go with. At first i was going to go with the mechanical valve but after further research i didn't like having to deal with the coumadin. What has me leaning towards the tissue valve is what seems more like a "normal" lifestyle. I am very active not to mention a professional meatcuttr. I don't want to worry about bleeding. My question is what are the side effects of the tissue valve? Are there any medications involved? I know it will have to be replaced eventually but hopefully medical advancements will make it easier. Still in the research portion of my journey and will probably have it done in the early spring. Thanks in advance for your help and am looking forward to a relationship with you all here. Talk to you soon, Jed

 

[Karlynn]

Welcome to our forum Jed. You've found the right place for this journey you've begun.

As you will find - valve choice is a very personal one. Quite honestly I think there is a lot of undeserved bad press for having to be on Coumadin. And there seem to even be a lot of doctors that don't know much about it, or pass along bad information. We have a valued Coumadin (warfarin) expert here as a member and Al Loddwick may be able to help you with any Coumadin questions you have. 12 years ago, at the age of 32, I wasn't given a choice. Because of my age, the doctors strongly felt that dealing with Coumadin was the preferred choice over having to have repeated valve replacements. But that was 12 years ago and I'm not up on the tissue valve advancements. You'll need to evaluate your life style, weigh it against the Hodgekins issues and go from there.

But we'll be here for you no matter which route you take up the mountain and down the other side.

Best Wishes,
Karlynn

 

[Kenny F]

Welcome, Jed!

As you will quickly find out, there are no bad choices, only informed ones. The pros/cons are stacked so even it is impossible to definitely say one is superior to the other.

That said, I am 6 weeks post-op with a homograft. I am no meds except Cardizem to slow my heart rate (common side effect from OHS). We had talked about a bovine pericardial, but the homograft solved my distended aortic root problem. You having mitral and aortic makes for an interesting wrinkle in choice.

If I had woke up with a mechanical I would have been OK - all choices mean more & better life!

 

[bvdr]

Hi Jed and welcome. There are several members here with rheumatic heart disease and I see by your profile that you are our newest. We also have another member, Johnny Stephens, who has a history of hodgekins and he happens to have had a double valve replacement.

I'm glad you found this site while you have time to educated yourself on your choices. You have probably spent some time reading prior threads on valve selection and found there are many opinions. With your history, I would be interested in learning about how many options you have open to you. Where are you planning on having it done?

Do you have problems with atrial fib that would put you on coumadin anyway? What kind of symptoms are you having and how long have you known about the rheumatic heart disease?

Coumadin hasn't been a problem for me thus and I hope it never is.....but I am not in a profession that has me handling knives on a regular basis either.

Again, welcome, and I hope we see a lot of you around here.

 

[Johnny Stephens]

Hello Jed and welcome to the site. I am a Hodgkins' survivor of 23+ years. You mention that your Hodgkin's is not related to your valve problems - that may not actually be true if you were irradiated in the chest as part of your treatment. There is evidence of radiation damaging the valves on the left side of the heart: http://www.acor.org/ped-onc/survivors/cardio/radia.html .

Also, if you visit the Hodgkin's mailing list archives (sadly, I haven't been able to find a "forum" for Hodgkins) at http://www.hodgkinsdisease.org/ you will find that there are some people with chest irradiation in their background that are now having valve problems.

I went with mechanicals because of my irradiation history, and I was still fairly young (43). My surgeon felt that my first operation would uncover scar tissue, and he wanted to minimize the number of future surgeries (hopefully to zero?). His prediction was right and the surgery turned out to be challenging.

This was *my* situation and I'm not presenting it as the way you should proceed or even the way your valve choice will play out. Of course, if you didn't have radiation this is all moot . Ask your doctor lots of questions, and you and he/she must make the choice together.

There is also another Hodgkin's survivor on the site: Al Capshaw2, and several other dual-valvers. I'm sure Al will chime in with some good insight as well.

If I were to make a list of 10 things I worry about during the day, Coumadin would be #10 or lower.

 

[ALCapshaw2]

Welcome to our world Jed !

As Johnny mentioned, I am also a Hodgkins survivor (approaching 40 years ago) and was treated with 'radical radiation therapy' of my upper body, including the central chest area.

I have had an MI (heart attack), angioplasty, bypass surgery, and most recently, Aortic Valve Replacement surgery so I 'suspect' a strong connection to the radiation treatment. There are also a couple of ladies who have had radiation treatment for lung or breast issues who have subsequently developed Valve problems and one or two other Hodgkins survivors whose names I have forgotten.

You didn't mention your age, which can be an issue in valve selection. My FIRST choice was for a Bovine Pericardial Tissue Valve which is made from the pericardium of a Cow's heart and shaped like a human valve. It has an impressive durability record of 90% at 15 years and some early recipients are approaching 20 years. Unfortunately, after opening me up, my surgeon felt that a mechanical valve would be best so I *suspect* there was a lot of damage from the radiation and the surgeon didn't want me to have to endure another replacement.

Homografts (human cadaver valves) are another option with availability being the key issue.

After your make a 'first choice' valve selection, then search for a surgeon who has LOTS of EXPERIENCE with your 'valve of choice'.
Note that the Bovine Pericardial Valve is one of the 'favorites' at the Cleveland Clinic which is the #1 rated Heart Hospital.

I recommend searching for a surgeon ASAP because they often have a different philosophy regarding timing of surgery. They like to operate BEFORE the heart suffers Permanent Muscle Damage from compensating for damaged valve(s) whereas many Cardiologists like to postpone surgery as long as possible. I side with the Surgeons on this issue. SEVERAL of us on VR.com got to surgery 'just in time' and have experienced more difficult recoveries and / or permanent limitations as a result.

'AL'

 

[fisher6476]

WELCOME JED

WELCOME JED

I am about 3 1/2 weeks out from aortic valve replacement and ascending aortic anyuerism repair. I am glad you found this site because it has been great help to be both before and after the surgery. When I first found this site I though "now I have found a place where people will tell me what valve selection to make, what hospital to go to, what proceedure to have done, what doctor to hire." Instead what I found was a wondeful group of people who gave my a great big "cyber Hug" told me to ask lot's of questions do lots of research( and they can point you to references) and then eventually the right choices for me would become clear. For me I stayed close to home for the surgery, hired a surgeon who I had lot's os faith in and chose a tissue valve. These were all MY CHOICES and everybody's decions in the end will have to be their own. While all this stuff is serious business, we like to celebrate life and have some fun too.
But listen to an opinion that seems to get stronger here every day. Once the diagnosis of valve replacemnt (or failed valve) has been made, many of us will tell you that we got advice from some proffessional (Cardiologists and GP"s?) whose attitudes were we will watch it for a while and see if it gets worse. Most surgeons we have met with I believe have said there is no sense in waiting. This is a disease that has a very poor prognosis once it starts to present symtoms and sometimes even without symptoms and there is no cure,. Only surgical intervention.
I hope I am not soundind too dramatic here, but my point is YOU need to take responsibilty for your health and make sure you understand as much as you can so you can make an informed decision.
I got information from lot's of cardios, and GP's and others who said "this is something we nedd to do somtime down the road but we have some time. I had surgery done within 30 days of those opinions and my surgeon came to me the first day post op and said "you were much worse than I thought. Had we not done this now we would have been counting your time on earth in days, not months or years.
OK Enough lecture. Jump in Jump around, learn a lot and if there is anything I can do for you feel free to send me a private message.
Regards, Steve

 

[Nancy]

Hi Jed-

Welcome to the site.

My husband has had 3 valve surgeries.

I see that you are facing a dual valve replacement. I cannot address the Hodgkin's situation, but as you can see, we have some folks who have this in their histories.

My husband has been on Coumadin for 26 years. It's one of the medications he takes that gives the fewest symptoms. For him it is a non-issue. You should discuss your profession (meat cutter) thoroughly with your surgeon vis-a-vis the Coumadin.

In thinking about the type of surgery you are facing, I have a few thoughts. If you go with two tissue valves, you already know that you will have to have them replaced sometime in the future. But the possibility exists that one might deteriorate before the other, and that means that you will have to have not another surgery, but two more surgeries. A second surgery isn't too bad, but once you get beyond that, surgery becomes more risky and the recovery is more difficult.

You've got a lot to think about. Valve choice is one of the hardest things.

It's probably the most hotly debated thing on this site.

Best wishes.

 

[Jed]

Hi again. Thank you all for your insight care and concern. I like the attitude that whatever choice i make it will be the best one. I just don't want any regrets afterwards. Just a bit more info on myself..I just turned 40 but feel and act much younger, lol. Not that 40 is old..wink wink. I origionally was diagnosed with hodgkins at the age of 9 back in 1973. I had radiation in my neck where the hodgkins was located. Then at age 14 it returned. I had the remainder of the radiation limit then chemotherapy. Then after 22 years in remision it returned. So more chemo and back into remission. Can't keep a good man down, lol. Just before the hodgkins came back this last time my doctor noticed a sound with his stethascope(sp) and sent me to a cardiologist. After a echo she informed that i had a leaky mitral valve and it would eventually need replacing. I said why noy do it now as i am healthy? She said wait a few years and see what advancements come around. Made sense to me at the time. Now to present time. My cardiologist says we should replace it now and do the aortic also. I meet again with her in 2 weeks to discuss it more. I want to have as much info as possible so i know what she is talking about so i can make the best decision for me. Thanks again for your help..Jed

 

[ALCapshaw2]

Jeb,

Check your Private Messages (Go to the bottom of the page, find the Forum Jump Box, Select Private Messages near the top of the list of Forums).

'AL'

 

[Neil R]

Welcome aboard Jed,

I too have been agonizing over my valve decision. Similar to you, I am leaning toward a biologocal (Bovine) valve. From my research, the only side effect is the shorter time frame before replacement.
Your medication may or may not change based on your doctor's evaluation and other medical issues.

Whatever you decide on is a very personal decision. There is no right or wrong. Just be comfortable with what you ultimately decide upon.

And by all means, ask you doctor for his input.
All will be well!

 

[Andrea]

Welcome!

Welcome!

Welcome to the board! This is the best place for advice and support from people who have been there Without this board I would have been lost when I had my surgery.

I had a mechanical Mytral put in about 8 months ago. So far Coumadin has been a breeze. And almost immediately I only had to go in to get my blood drawn once a month. As far as the bleeding thing I havent had any problems and I've cut myself etc. Just yesterday and was pruning my roses and jabbed a thorn in real deep and I just put a little pressue on it and when I let go in about 20 seconds there was no bleeding. I've even sliced my thumb in the kitchen pretty good (Although that one took several minutes of pressure).

I'm 32 and lead a pretty active lifestyle and I havent had to cut back on anything.

Again, welcome to the board

 

[Harrybaby666]

Hi Jed

Hi Jed

Hi There Jed,

Welcome to this wonderful website. I too have valve regurgitation (All 4 are leaking, but the worst is the Mitral), and I am 3 years younger than you. Like you, I am battling other illnesses also, not necessarily the same thing, but just as serious. Well, anyway, I just wanted to let you know that If you need someone to talk to who knows what your going through, please feel free to email me or pm me. my email is [email protected]. Meanwhile, Welcome Abored and Take Care and Take It Easy.

Harrybaby666