Test results in: I need surgery

[alicia]

Just went to Duke today to get test results from the catherization/stress test. My pressures are very elevated at exercise and blood not circulating right. Cardio heard loud murmor and said the valve is the problem and will need to be replaced. Doubled up all meds and going back in Jan. for evaluation, but he thinks meds are not going to help. I asked him what he would do and he said go ahead and put in mechanical valve or pig valve.

The best news is that he said they can go in thru right side and wont have to do a sternal incision. I thought they would have to do the surgery most of you have had with midline incision and sternal wires,etc.

I dont know whether to do pig valve or mechanical mitral valve. I hate the thought of being on Coumadin. Whats everyones thoughts? I would love your opinion on which is best.

 

[Ross]

I look at your age and in my opinion, I'd go mechanical. The coumadin thing isn't really that big of a deal. I guess what it boils down to is, how many more surgeries can your body take. Mine has been pushed to what seems, it's limits. Whatever choice you make will be a good one. The main thing is getting fixed!

Love,
Ross

 

[Nancy]

Darn Alicia-

I was hoping that you wouldn't need surgery so soon, but it's wonderful that they can go through the side. Joe had one that way. The recovery is easier.

Alicia, I've watched Joe go through a boatload of heart and lung surgeries. Like Ross, he's reached the physical limits of what his body can stand. Each additional recovery becomes a terrible ordeal and it takes forever to bounce back. You end up with a ton of scar tissue and adhesions in your body, all over the place. If you can avoid additional surgeries, that would be the best thing you could do for your body. Joe's been on Coumadin for 25 years, it's just another med he has to take. Sure there are a lot of blood tests, but he has those anyway for all sorts of things. He has a doctor who keeps him in good control. And the blood lab can always find a vein, even though they can only use one of his arms (he has a compromised vein in the other from an old cath).

So Coumadin is no problem in this household.

 

[medtronic of borg]

Approach

Approach

Well my 2 cents worth is this. Go mechanical due to your age and discuss with the Dr. How many has he performed. He may like your concern over his field. It is more simple to work in a larger field. (and safer). Then in a matchbox size approach. Just food for thought.

 

[Kevin M]

After the doc's give their opinion, the decision becomes very personal.

If you aren't liking the idea of coumadin, then a stentless pig valve or a bovine valve would be a good alternative.

The choice is hard because you have coumadin on the mechanical side and a strong probably that you'll need a reop or two with the biological valves.

Many of us 'biological' people accept the additional surgeries because we don't like the risks that come with blood thinners or our lifestyles don't match those of the coumadin regiment.

The bottom line is that mechanicals are safe, very reliable, you give up your extreme sports, you watch your diet more closely and monitor your blood. A little bit of inconvenience every day.

Biologicals are safe, but will not last the remainder of your life. Consistency of diet and monitoring your blood are a not anything you need to be concerned about and you can do all the contact sports and rock climbing you want without worry. But there is a lot of extra fear and inconvenience when you need to go for reop.

So far, I am on my second biological. I'm 36 years old and hope that I won't need my third op until I'm 50, although it's likely to happen sooner. Unless they can develop a better alternative by that time, I'm going to go for the mechanical next time. I do not think I can make the choice to face more than a third operation.

Whichever you choose, you will be able to live a healthy and active lifestyle. I always hear the 'mechs' on this forum talk about how coumadin isn't that big of a deal. Sometimes that makes me wonder if I made the proper choice with my most recent operation of having a pig part put inside my chest.

For me - I don't regret the decision because I know that either way, I will still be alive and happy.

Good luck in making your choice.
Kev

 

[csutherland]

mechanical vs pig

mechanical vs pig

I don't know your age; sounds as if you might be relatively young. My husband Jerry was 65 when he had the mechanical aortic valve replacement last Feb. The coumadin was kind of a pain for a while, but has been easily regulated during the past few months. There are a few issues that sometimes make me wonder about our decision: He has intermittent pain near the site of another incision for a subsequent surgery done in April. The surgeon says that if he could take Advil or other anti-inflammatories it would go away in a few days. Tylenol is all he can take but it doesn't touch it.

Also at his age he has other "aches & pains" in his hip, back, etc. His family history is a long life (up to 100+) but with arthritis, so I wish he could take the drugs that would help this kind of pain. So it's a catch 22--mechanical valve because of his long life expectancy, but the misery of arthritis is there without benefit of some of the common pain relievers.

Again, it's your decision and in Jerry's case it isn't a huge deal yet, but this drug thing was something we didn't think of.

 

[joy]

mechanical vs. biological...

mechanical vs. biological...

Hi Alicia, I guess I can put my 2 cents in...I am 24, was 23 when I had my valve replaced. The way my cardiologist put it no matter what I would have to have it replaced, and he didn't seem to hold too much for the mechanicals to last much longer than 10 years for me. I let my surgeon decide what kind of valve to use. He decided to put a Bovine. I know i am looking at another surgery or two in the far distant future, but as my husband put it...I have a hard enough time remembering to take the meds that I have now, it would be bad if I forgot the coumadin...ever! And I am afraid of needles. There goes the INR testing! SO...If you really don't want the coumadin, think of it that way.

 

[Gnusgal]

Alright, I have to add my 2 cents to the conversation now.

I was not given a choice of valves. Don't ask me why, but I wasn't. Probably due to pressures or something, because of my funky heart anatomy (small ventrical is doing the work of the big one, and vice versa). At any rate, I was given a mechanical valve. I was VERY not thrilled, but again, wasn't given a choice. After the surgery I was still not happy about it. I hated the clicking, hated the twice a week needle sticks (Joy, I was extreemly afraid of needles too, and still am unless it's "MY" lab lady). I thought I'd never get coumadin regulated, and constantly thinking about how much vit. K I was eating drove me NUTS.

This being said, I am now 5 months post op, and can easily say I rarely notice the clicking anymore (sometimes at night or when I've done too much and the heart is pounding), I've gotten my coumadin regulated to where I only have to report my INR readings every 2 weeks (yippy!), and I got a ProTime, which means I don't have to do the big needle sticks anymore (doc approved to stick with JUST protime unless things get off)! You know, it's funny, but I'll kinda miss seeing my "lab lady." Definately won't miss the needles, but I like her. And I finally (after 26 years of life) have gotten to where I don't HAVE to have someone hold my hand for lab draws. Now with IVs, that's a different matter, but I can do okay on my own now for my INR readings.

So, mechanicals aren't so bad once you get used to them. But it definitely took some getting used to.

 

[McCln]

I will put in my two cents also!

I will put in my two cents also!

I was 36 when I had my St. Jude's in last year. Because of my age and not wanting too many future surgeries, I agreed to the mechanical valve because of being single and no children, it was a sound decision. I do mot regret the decision after all this time. Yeah, I wish I could have kids, but not with the coumadin. But I am still single and now am using birth contrl for other health issues. With the mechanical, you cam be just as actiive as with the bovine. Just that with the bovine, you face more surgery sooner. The mechanical valve is guarenteed for up to twenty years. That was fine with me. You should be educated on all the options available to you .Education keeps you calm cam collected. You make the final decision you feel comfortable with. You have come to the right place for support. We are with you no matter what you decide. Your choice. Take care and come in often.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[alicia]

Thanks for so much wonderful input. Im 41 years old (almost 42) and I had the mitral valve repaired last year and had a bad time after surgery, was on respirator for 4 days and got 2 blood transfusions and had lots of problems with the incision site. I really hate to think of another open heart surgery.

I really have a hard choice to make. Boards seem divided as to which is best. How do you make such a decision that will alter your life?

So from what I can tell, bovines last maybe 10 years and mechanicals for 20 years or so, right?

Thanks for everybodys help. I am sooo sooo glad I found this site. It has made such a difference in my life. Love to all of you.

 

[Gisele]

Here's my 2 cents

Here's my 2 cents

I would go with the mechanical given your age, but this certainly is a personal decision.

I had no choice. I had my mitral valve implanted nearly 21 years ago and I was not given a choice. It seems that the only valve that would fit properly was a mechanical valve.

I have never let Coumadin interfere with my lifestyle, but I do not make the model patient. I go skiing in the winter when I get the chance, but I am careful. I eat and drink what I want but in moderation.

So I guess you just have to decide what is right for you. I wish you all the best as I am certain that this is a tough decision to make.

Gisele

 

[wlaldridge]

Most surgeons believe that the new mechanical are the "one valve for life" as St. Jude puts it in there ads. Very low failure rate, bigest concern is with clotting if not properly anticoagulated.

Some think the bovine are going to last longer than porcine but are too new to be sure.

One good bet, 10 or more years from now the surgery will be vastly improved over today just as today is vastly imporved over 10 or 15 years ago.

Sometimes people are not able to avoid anticoagulation therapy even with tissue valves becauce of other complications like ongoing a-fib(at least that is my understanding)

Also, even after you chose the surgeon has to make the final decision once he is "in the field" and surveys the situation. I had decided to go for the stentless porcine if possible, the surgeon decided that if would be too complicated to implant. I wanted him to be the final authority.

All choices are good compared to not having a choice to continue living. Right??

Best of luck,

Bill

 

[alicia]

Janie, I never said that mechanical valves were "guaranteed" for 10-20 years. I asked if that was correct. Im going by what Ive heard others say, not what the doctor has told me. At the time when diagnosis was given I didnt think to ask him how long the valves would last, I was too upset at the time. Thats why Im going back after the holidays to have all my questions on a list for him.

 

[Ross]

You may want to read the info at the following link:

http://www.onevalveforlife.com/ovflTemplate/ovflContentTmp.aspx?section=2&page=2

There are no guarantees with any valve, mechanical or tissue. The only sure thing is that most mechanical valves SHOULD last the lifetime and tissue SHOULD last 10 to 15 years.

I asked my surgeon what he thought about where the medical technology was going and the answer I got was, "It doesn't matter where it's going, we cannot predict the future and your in need of surgery NOW." He did tell me about On-X mechanical valves. He thought they were better then St. Jude, but I needed a graft collar and On-X doesn't make one with the graft yet. Of course, mines in the aortic position, not Mitral.

P.S. I just noticed that our very own Les Barrett is featured on that page! Way to go Les.

 

[DuchessBear]

Hi Alicia

I think you'll be very glad that minimally invasive surgery is an option for you. In October 2001 I had "Heartport" surgery to replace my mitral valve with a St.Jude mechanical. The surgeon made a 3 inch horizontal incision just under my right breast and went between the ribs (no cutting of any bone) and into the heart through the back side. A small incision in my left groin is where they hooked up the heart-lung machine. I did not experience anywhere near the pain or discomfort described by others on this forum. Mostly it was muscle-type pain in the area of the chest incision -- the groin incision never bothered me at all, and I had no problems with my lungs. I took only an occasional Percocet for about the first 10 days and an occasional Tylenol for about a week after that. I had very few restrictions on activity. I could do pretty much whatever I could tolerate. I was driving at about 2 1/2 weeks post-op and in rehab at 4 weeks. One thing that's going to be the same for any type of surgery is the total recovery time. It still takes a while for your stamina to get back to normal, but I am so glad I didn't also have to deal with wires and healing bones and other issues associated with traditional open chest surgery.

Here's a few web sites with good information: www.inova.org, www.heartport.com, www.ismics.org (International Society for Minimally Invasive Cardiac Surgery), www.sts.org (Society of Thoracic Surgeons), www.nhlbi.nih.gov (National Heart, Lung and Blood Institute).

 

[alicia]

Thanks to all for your input. And Janie, thats no problem. I think I misunderstood you. Thanks Ross and others for helpful websites.
Im so happy that I my be eligable for invasive surgery. I hope that is still the case when I see the cardiac surgeon. Thats what I had last year with the repair and its alot better than wires, etc, the only problem I had afterwards was the groin incision would not heal and they had to split it back open and my daughter had to come in and change packings 3 times a day. But that was a minor inconvienance. It was not painful just yucky having the open incision in the groin. Ill take invasive surgery anyday and thank God that Duke offers it.

Thanks to everyone and I hope all of you had a wonderful Thanksgiving.

 

[Granbonny]

Gisele

Gisele

You are my mechanical Valver hero... 21 years on coumadin..and do not dwell on it..Me either 8 months post-op..Just returned home from a 6 hr. trip..Made a big Honey-baked Ham sandwich and finishing off a piece of pecan pie. .....Oh, time for my coumadin pill Bonnie

 

[Gisele]

Bonnie, not a "hero"

Bonnie, not a "hero"

LOL at least my doc wouldn't agree! I've actually gotten myself in too much "trouble" over the years by not behaving. I figure the Coumadin rules are made for everyone but me! I just don't want to live my life saying 1 salad=1 beer. So, I guess I just go with the flow. I just don't do anything stupid. Actually it's ironic, when I worked for the cardio docs for four years, one day per week I would be on the "Coumadin desk", and would have to call patients with their dose and naturally answer any questions they might have. I never really practiced what I preached. During that time I came back from Florida where I discovered rumrunners, and very high INR's. The lesson I learnt was: rumrunner=subdural hematomas. Lesson learnt. But I agree, you can't dwell on it. It doesn't do anyone any good.

Enjoy life

Gisele

 

[MarkU]

I got my St. Jude valve two years ago when I was 47. My both my cardiologist and my surgeon spent a lot of time explaining the choice of valves to me and while they both strongly recommended a mechanical, they insisted that I make the final decision.

I have never regretted the decision to go with the St. Jude valve. I still lead a very active lifestyle and the Coumadin has not been a problem at all. (maybe I'm just lucky, I don't know...)

The surgery was tough enough at 47. I can't image having to go through it every ten years or so, and I wouldn't want to bet on any huge breakthrough in medical technology in that timeframe.
My roomate in post-op was in his 60's and had a very difficult time, whereas I was up and around pretty well by the third day.

Even so, it took me about nine months to really feel normal again and can't image having to do it again repeatedly being ten years older each time.

Mark

 

[Nancy]

Mark, I agree with you about repeat surgeries. My husband has had increasing difficulties with each successive surgery. It's rough when you are older and have already had one or two. Granted, he's also had 2 lung surgeries and some other pretty bad things. But it seems like his body starts to break down and develop weird and extremely serious things now after surgeries. I don't know if this is an area in medicine that's very well developed. But as heart surgery patients grow older, maybe some research will be done on the effects on the body of repeat trauma.

There might be a couple of other folks on this site who've experienced the same scenario.