Dual valve replacements

[bvdr]

Hi,
I've been busy educating myself while here in the waiting room and keep coming up with new questions. As I've mentioned before, I've got rheumatic heart disease (MS.MI.AI,TI, and PH). I've never seen anything on any of my reports about the pulmonic valve but I guess that really won't make any difference to me anyway. I've already been informed that I need my aortic and mitral valve replaced and the tricuspid valve repaired. The question is when to do this. I'm waiting for the word as to if the mitral valve is favorable for a balloon valvotomy procedure to buy us some time before the big one.

My next appointment at Duke is July 15. In the meantime I have spent a lot of time on sites researching different valves and procedures and of course their risks.

I find very little on double valve replacements except little footnotes and asides -such as "if one valve is replaced with a mechanical one then the other should be as well". Those are the kinds of things I can sorta figure out now . Does anyone know of a good site for this?

One other thing. My echo doesn't mention anything about aortic stenosis but my valve area is l.6. Does anyone know what the parameters for diagnosing aortic stenosis are? It probably doesn't make alot of difference for me if I already have to have it replaced but I'm interested on the extent of rheumatic damage.

Thanks for any help. I'm so anxious to start feeling better again and get my life back! I hope everyone here is feeling and doing well today. Thanks again..............Betty

 

[Nancy]

I'm not sure if the following will help you, but if you would like to wade through them, here's the links. They are from the American College of Cardiology/American heart Association Task Force on management of patients with various valve problems.

They answer lots of questions that come up here and are technical in nature.

http://www.acc.org/clinical/guidelines/valvular/jac5929fla145.htm

http://www.acc.org/clinical/guidelines/valvular/jac5929fla16.htm

After you finish these, there will be a test. LOL

 

[bvdr]

Hi Nancy,

I printed those out (full text) a few weeks ago and believe I can pass that test with flying colors. They provided the most definitive answers I have found so far and have been very helpful. What would be your next suggestion. This problem can't be all that uncommon, is it? I'll ask my cardio at Duke at next appt. but I really really want to have done all my homework first. Thanks again for your help. I hope you and Joe are well and are having a good day. .....................Betty

 

[Nancy]

Hi Betty--

If I come across anything else, I'll post it. I guess what I read was that each valve has to be assessed on it's own merits, and treated accordingly. They did mention the valvotomy on the most ammenable valve to try to buy time, and I guess that's where you're at right now.

Your valves sound a lot like Joe's. His tricuspid is leaking, but his PH is causing that, plus he has some pacemaker wires going through it. So surgery is not possible for him.

Hopefully his PH is coming under control enough to slow the leak. I don't think anyone wants to operate on him now anyway. He's really had too many surgeries. Meds are doing well for him, though.

Take care,

 

[ILoVeNY25]

Hi Betty,

Oh How familiar it all sounds, I had exactly the same problems. I also had Rheumatic fever and 6 years later I was diagnosed with Class IV CHF, With MS, AI, MI, TI and PH. I also wondered about the pulmonary valve but no one ever mentioned it to me. (Does give me another question to write down to ask my cardio) I had all 3 valves done a little over a year ago. I also had trouble finding sites about multiple valve surgery but there are a good few people here who had double and triple valves worked on. I'm sure they'll chime in soon. Take care and let us know of your progress.

 

[lcwhitney]

Betty,

I had an aortic valve replacement, pulmonary valve replacement, ASD repair, and a pulmonary artery anuerysm repair in August of 2001. I am waiting to have a second pulmonary valve replacement at this time. Both my surgeon and cardiologist in Houston told me that the main indicator for pulmonary valve replacement is the valve graident( the pressure above and below the valve). The higher the gradient the closer you are to having a replacement done. I also looked for information on double valve replacements and found very little information. The best way I found to get answers is to make doctors answer questions. I am pretty sure that the way to determine if any valve needs to be replaced is the gradient.

Lettitia

 

[Mb]

In October 2001 my husband had two valves replaced with St. Jude mechanical valves. At the time, the Dr.'s did not realize that his tricuspid valve also had a severe leak. He is also in chronic a-fib.

Last month we saw his Boston cardio, who wants him to have a transesophgeal echo done, mid June. (other tests had to be done first). I think this is to analyze his tricuspid valve. At that time we brought up the "pacemaker" issue again, and he said no way, that with his tricuspid valve leaking the way it was, it was not a good idea at this time.

Last week we saw his local cardio, who said not to have the tricuspid valve repaired, but the pacemaker was a great idea (he has been an advocate of this for over a year), and that it would make him feel better. Ugh.

So, the long and the short of it is that it sounds like YOUR doctor is right on top of things! Best wishes!

Marybeth

 

[Mb]

Oh, by the way, what I meant to post, before I got rambling, was that I have spent countless hours looking for info on dual replacements. There is truly not much out there. But, there is a bit. Check Nancy's links. Best wishes.

Marybeth

 

[pillarpaul]

Betty,

Dual valve replacements? Best web site for that might be:

www.popularmechanics.com or www. hotrod.com

Oh, wait, now I know what you mean. Never mind.

(Sorry, I just couldn't resist plus this is my 100th post. Wanted to make it "memorable" Hope you don't mind a little humor at your expense.)

Paul

 

[bvdr]

Thanks everyone

Thanks everyone

Thanks for all the responses.

On average, how much longer is the hospital stay for the combined procedure? Between Joe, Nicole, Lettetia and also Marybeth's husband, there is a lot of experience from which to draw.

It just makes sense that the procedure takes longer and thus requires more time on the machine, more anesthesia, more meds, etc. and that all has to figure into the mix. I imagine that age and general well being would as well.

Nicole, are you doing well now? I noticed we have a new member today that has a history of rheumatic heart disease so our numbers here continue to increase.

I notice quite a few of our members have pacemakers. Out of curiosity, is it because of heart block or more to over-ride rapid arrythmias or a combination? Nancy, I imagine Joe's pacer wires do limit his options. I'm always glad to hear that he's still enjoying life and that he has you by his side. What was the biggest single surgery that he went through? Thanks, Betty

 

[Nancy]

Hi Betty-

All of Joe's heart surgeries were one valve at a time. Believe it or not the three surgeries that were the most difficult, had nothing to do with his heart.

He had a partial pneumonectomy on his lung for a benign tumor that was growing, that was a bear of a surgery, very, very painful and the pain continued for a long time. He still feels twinges in his back where they had to sew in a piece of Goretex. He was on pain meds for a long time after that one, then in his other lung he had a partial collapse caused by scar tissue (I think now we know the scar tissue might have been from his pulmonary hypertension) and he had a pleural peel removed (decortication), the back muscle was cut through in both of these lung surgeries. Extremely painful surgeries.

Then last May, he went in for a gallbladder removal, and had a massive bleed which almost cost him his life. I guess, from a medical standpoint, that was the very worst operation. His recovery from that was months and months. He had to have 33 units of blood products to keep him alive. And after this episode there were some very complicated medical things that happened to him.

He says his heart surgeries were nothing like those above.

Joe had to have a pacemaker put in to control very slow heartbeats that were causing him to faint. Interestingly enough he also had periods of very rapid heart rates. He has chronic afib, and even though the pacemaker doesn't always control that, it does do something that makes it stay in rhythm most of the time. He does have a very fast heart rate.

I don't mean to scare you, not everyone with rheumatic heart disease has all these things happen. But everyone should be aware that they COULD happen, and be as vigilant with your health as possible.

 

[bvdr]

Well Paul, you did make your 100th post a good one. I'm really am glad you are doing so well. If there was a good" 10 easy steps for valve surgery " I'd probably print it out and study that too!

Nancy, you are not frightening me and I'm glad for the information. I know this can be pretty serious stuff but it is what I've been given to deal with and God will give me the strength to go through whatever I am given. It is amazing what your Joe has come through. My atrial fib is being suppressed most of the time with flecainide but the cardio-surgeon says that as the left atrium continues to enlarge it will become more and more difficult to control. Our goal right now is to stay in sinus rhythm more than out of it.

Nicole, how did you do with your surgeries? I am going to go back now and re-read your old posts and your personal profile (I'll do one once I'm a success story ). I like seeing your smiling face on the screen. I don't know how to get a picture on there.

Anyway, thanks again for all the help!........................Betty

 

[Georgia]

I'll raise you one mitral and one tricuspid

I'll raise you one mitral and one tricuspid

Hi, Betty! I had mitral replacement and tricuspid repair on Feb. 3; 81/2 hours of surgery (probably had something to do with the doc repairing the mitral first and that was a failure) argh

According to hubby, got to icu at 5:00 pm after surgery and got breathing tubes out at @7:00. Got out of the hospital on the 4th day. And have had a remarkably unremarkable recovery (thank God for BIG favors).

So I'm not so sure that multi-valve surgery is necessarily the sole, or major criterion for length of hospital stay or difficulty recovering. I'd really like to take credit for it but certainly can't (other than for having found this website and sucked it dry).

I've always healed well and have seldom been sick (I've never had flu!); therefore, I think my circulatory and pulmonary systems are healthy. And I heal pretty fast, which allows me to be up and active earlier than many folks. And all of this is serandipity; I consider myself both lucky and blessed and it's a mighty big gift.

So, you go, girl; the better shape you're in prior to surgery, the better you'll do; even if you have a complication or setback, good physical and emotional health mitigate the problems.

 

[fdegranville]

Info on double valve replacement

Info on double valve replacement

HI Betty,
Glad to see you back on the site. I don't have any additional info for you. When I was conducting research I also had a difficult time finding info on double valve replacement. I also had a hard time finding info on the impact of a mitral valvuloplasty on aortic regurg. When are they going to tell you about that? July seems like a long time until your next visit. I am very disappointed with the results of mine. I spoke to my doctor last week and she agreed that it didn't do much of anything. I will see her on Friday to discuss next steps. I still feel bad and notice only a little less shortness of breath and also less swelling (which is great). But I'm still so exhausted. My valve was at 1. which is considered critical and they never told me how much they were able to open it. You mentioned yours was at 1.6 (aortic and mitral are the same size?). Maybe it would work better on a valve that is a little larger?

Anyway let us know what happens.
fdeg

 

[bvdr]

Thanks for the encouragement Georgia. I am trying to get myself in the best all around shape prior to any intervention. I'm glad you are doing so well.

Hi Francesca! I did have a typo on the valve area. The mitral valve area is l.6cm and the aortic in l.8cm. The mitral isn't even where they would normally do anything with yet but he said that really wasn't an issue here because of the combination going on. He just wants the cardio who specializes in ballooning to take a good look to see if I would benefit from opening up the valve and also opening up an ostial lesion in a coronary artery at the same time. My arteries are really clear except for this one area. When I was a teen-ager I did have some x-ray treatments on my chest that may have caused that. It's unclear what exactly the purpose was but it may have been aimed at shrinking my thymus to help me over a bad case of whooping cough.

Anyway, July does seem a long way off but right now I don't mind. I have to finish moving between now and then and I'd like to get up to Michigan and see my mom too. She doesn't know about any of this and I'm not sure if I'll ever tell her. She is very old and frail and disabled with Parkinson's.

I know Francesca is disappointed with her balloon results and I know that it isn't a sure thing because it changes the dynamics of what is going on in the heart and other existing problems may become worse. Does anyone else have a shining success story to report?

I hope everyone has a good day and thanks again for all the support.........................................Betty

 

[Mb]

Hi Betty:

Thought I'd give you some answers, at least from our experience.

First, my husband was actually in surgery a bit over 10 hours. I don't know exactly, as the surgeon called me at the waiting room, while they were still closing him up, and told me that he would not "get to" CICU until around 7:00PM. I am not absolutely certain how this compares to single valve surgery.

He was in the hospital 13 days. In CICU for four days, nine in the step down unit. He reverted back into a-fib, four days into recovery, and of course, that set him back a bit. They did tell us that they did not think he would stay out of a-fib. He has been in a-fib since.

His recovery period is not comparable to 99% of the others on this site, as he still has that severe lekaing tricuspid valve, and the chronic a-fib. However, he is MUCH better than he was right before the surgery. I wasn't sure he would make it to the surgery. We made two ER trips, just beforehand, he was doing so poorly.

I am confident others will add their info, as they see the post!

Marybeth