pulmonary valve surgery 5/11/04 who else?

[Leighanne]

Hi
I am 32 and since Dec 03 have discovered numerous problems as a result of repair of pulmonary atresia at birth. This is all new to me. did not really realize I have CHD. Anyway I am scheduled for pulmonary valve replacement, ring in tricuspid, MAZE, and procedure to decrease size of my pulmonary artery. I have not found many posts related to this valve and need your input, research and experiences please.
Thanks
Leighanne

 

[Ross]

Hi Leighanne and welcome to the forums.

Please post only once in the forum that most closely follows your thread subject. Your new, so don't worry about it. We read every forum and most of us, every thread, so if you post more then once your going to have answers all over the place.

You may want to read the personal stories listed below. I would think they may be of some value to you until others come along.

http://www.valvereplacement.com/stories/tracy_bergacker.htm

http://www.valvereplacement.com/stories/amy_baldwin.htm

Others will be around, just give it some time and again, welcome to the forums.

 

[Nancy]

Hi Leighanne-

Welcome to this terrific site. Can't help you out with the pulmonary valve issue. My husband's pulmonary valve, so far, , is the only one that hasn't had a problem. He's got two mechanicals, aortic and mitral. His tricuspid is leaking, but doesn't require surgery.

We have so many folks here, there is bound to be someone who has had pulmonary valve surgery.

In general, though, much of your surgery will be similar to what others have gone through.

So we'll do our best to get up to speed on the pre-surgery phase. And help you along in the post surgery phase.

 

[surfsparky]

Hi Leighanne,
I too, may be faced with a pulmonary valve replacement. I find out in May when/ if this will happen. I found that pulmonary valve replacements are pretty rare too, so it's difficult to access info on it (but my wife's working on that one!). With little information it can be quite disheartening (and scary). I do know that they do not replace pulmonary valves with mechanical ones (in Australia anyway), but they use a tissue valve. Is this the same where you live? Do you know what your pressure gradient is in your pulmonary valve? Two months ago mine was 42mmHg, and apparently my cardio said that they operate around the 50mmHg mark. What symptoms are you experiencing? I'm sorry that there is not more of us around that can help you with pulmonary valve info, but know that all the members are here for you.
Take care,
Chris

 

[tobagotwo]

I believe there is a Medtronics Freestyle (tissue) for the pulmonary valve. It is generally a low-pressure, low-abuse valve, and I believe that replacements should fare much better and last longer than aortic replacements generally do.

I certainly wish you good fortune with your surgery.

 

[Leighanne]

Pulmonary valve replacement

Pulmonary valve replacement

I think I am given the option of a tissue vs mechanical valve. They do both here with the pulmonary valve. I dont know what my pressure gradient is. I only found out 4 months ago that I need surgery, thought I was fixed. It is frightening not to have more info and more PVR people. If anyone finds info please let me know. Surgery scheduled still for May 11th in Boston at Childrens. Sometimes I get the feeling that I have not asked enough questions, that I dont know as much as the rest of you about the specifics but I have only just found all this out.
Thanks for the new replies
Leighanne

 

[bvdr]

Leighann,

I recommend to most people to get copies of their medical records. I do this and find it really helps. It gives me the information I need to research at my leisure. Once I've researched I am in a better position to ask the questions I really need answers too. The first couple of test results you pick up will seem like a foreign language but after you work at it a while it will all make sense.

As you can tell, more of us have had aortic and mitral replacements than pulmonary or tri-cuspid replacements.

You might ask your doctor or surgeon what questions he/she thinks you are forgetting to ask.

 

[Bryan B]

Leighanne,

I had the Ross Procedure done and I have a homograft (cadaver) pulmonary valve. My original pulmonary valve is now pretending to be my aortic valve. Just thought I'd throw that out there as a possibility.

 

[tobagotwo]

The Boston hospitals have excellent ratings, especially Boston Children's, Brigham and Women's, and Mass General, as I recall.

While pulmonary replacements are not as common as some others, I understand that they are sometimes considered candidates for less-invasive surgery types. You might ask about incision types.

The choice of mechanical or tissue is the same for any valve. The ramifications of each choice are nearly identical. Leafing through the many posts on valve choices will provide you with both the information and often impassioned cases for each type.

 

[tobagotwo]

One more thing - those who have had the Ross Procedure have had their pulmonary valves replaced by definition. Their Achille's heel, if they have one, is the homograft in their pulmonary position.

As such, you might want to check the knowledge base of VR posters like Bryan, who underwent the RP.

 

[surfsparky]

Yep, I've had the Ross Procedure done too - 11 months ago. So I have a hmograft valve in the pulmonary position but around 6 months ago my body decided that it is a foreigner and has started to scar it over, hence why I need another pulmonary valve replacement. Don't allow this to put you off a homograft though, because this is a rare scenario. My aortic valve (which has my original pulmonary valve there now) is great. I'm glad to hear that they can do mechanical valves for pulmonary valves over there - I think I might push for it over here, because I'm not overly excited about the prospect of more surgeries after this one!
All the best for the 11th Leighanne - I'll be in hospital that day too (for tests for my pulmonary valve) so I'll keep you in my thoughts and prayers,
Chris
P.S What valve have you decided on?

 

[Leighanne]

pulomary valve replaced

pulomary valve replaced

I have not decided on a valve, I am supposed to meet with or talk with my surgeon this week. My surgery is scheduled for May 11th but if you have read my other posts, I have had pneumonia for a couple weeks, so dont now about date now. I see my adult congenital specialist at Childrens this Wednesday so we will see. My surgeon had put out there the ATS valve currently being tested in Europe for use without Coumadin. I just dont want to have to have surgery again, cant have more kids anyway. I am a little over two weeks from scheduled date and dont feel I know enough and dont have time to learn.
Leighanne

 

[Abbanabba]

Good luck with your visit to the surgeon Leighanne. Keep us posted on what happens with your date. I'm sure there's part of you that would just like to get it over and done with.... and another part that would be glad for a temporary "reprieve".

Meanwhile, please let us know if you find out more about a mechanical PV. I too will eventually have to have mine replaced and as Chris mentioned, this isn't an option currently available in Australia, so I'm sure we'd both love to find out more about it - especially if that is the choice you opt for.

My thoughts will be with you.


Chris -
How ya goin' mate? I've been wondering how you've been doing - looks like the things are moving along. I hope your tests go well and I'll be sending positive thoughts your way too.


All the best to you both
Anna : )

 

[Leighanne]

PVR and incision type

PVR and incision type

I have to have the full deal. I need a tricuspid repair (ring), they need to make my pulmonary artery smaller, it is huge, too big for a stent. (does this mean I have or would get pulmonary hypertension, I had never thought of it, dont know much bout it) I am also having the MAZE procedure on right and left atrium so it will look just like my old scar I guess. I want to get it over, yet still picture myself running out the door the morning of the surgery and part of me wants it so I can have a reprieve from my son. He is having lots of complex partial seizures again and no sleep in my current state of, well feeling like crap, not a good combo. I did spend 6 hours alone with my husband last night with Margaritas and yummy steak fajitas so that helps the hell currently going on at my house, a little.
Thanks
Leighanne

 

[surfsparky]

Leighanne,
thanks for your replies...sorry I hadn't read your other posts (my work and young kids take up lots of time, so not much time left to browse this great forum.) Sorry to hear all that you are going through, and on top of that, all you are going through with your son. You must feel like you are just only hanging on by a thread at times...I'll keep you in my prayers.
Keep us updated.

Anna,
Sent you an email..we've been away camping (first time with kids!!)
Talk to you later,
Chris