Pulmonary Valve Need Replacement

[KirstieP]

Hello. This is the first time I have posted on this site. I found the site to be very helpful a few years ago. I first visited in 2002 when I was told that I needed to have my aortic valve replaced at the age of 26. I opted to have the Ross Procedure which involved having my pulmonary valve replace my aortic valve and a donor valve replaced my pulmonary valve. At the time it was thought the surgery would be succesful and would keep me out of the OR for 20 years. Everything went fine until a year ago when a routine check up showed that I now have pulmonary stenosis which will require surgery to replace my pulmonary valve. Needless to say I'm devestated. I was just wondering if there is anyone who has had a similar situation to mine? It would be great to talk to anyone who has gone through the Ross Procedure!

Hope to hear from you all soon!!

 

[LUVMyBirman]

Sorry to hear about your situation. Sorry I can't help you with the Ross. Where do you plan on having surgery?

Wishing you all the best.

 

[Stitch]

Hi Kirstie,

I had a Ross about the same time you did at 52. I am still OK 6 years later. I am sorry you will have to go through another surgery. Your situation is something that is never far from my thoughts. Every year just before I have my echo and checkup I worry about what I will do if I ever have resurgery. At this point I will still go with a homograph if I need resurgery for the pulmonary valve. Selecting the surgeon will require some work as the guy who did my operation has retired.

Dennis

 

[gijanet]

Yes, Kirstie!

Yes, Kirstie!

Welcome to the group, but sorry to hear that your PV isn't holding up. Brad White has had a similar experience to yours. He only pops in every now and then these days, but you might try PMing him or e-mailing him. A quick search came up with this thread.

http://www.valvereplacement.com/forums/showthread.php?t=17739&highlight=ross+procedure

If you search you can find his original intro that reveals more of his story. He posted his experience with the Ross in a few threads, but I'm sad to say that a couple of staunch, sexually frustrated (sorry, but that is the only possible explanation for their caustic responses) Ross advocates on here went into attack mode. Dunno if that is why he is so scarce these days, but it sure didn't help. If you "talk" to him, please tell him to check in and let us know how he is faring.

Good luck and keep us posted. Hugs. J. P.S. Don't want you to get the wrong impression - this group is filled with many, many compassionate people, including lots of Ross folks. One or two sour apples don't spoil the whole bunch!

 

[Bradley White]

Hi Kristie,

I understood you completely when you said "Needless to say I'm devestated." I still remember the helpless, depressing feelings swirling through my mind when I found out my Ross was failing. The Ross was probably sold to you as a "cure" -- the perfect valve replacement that will last a lifetime. For some, this is indeed the case, but for others like you and myself, this initial prognosis as "cured" makes the failure all that more difficult to handle emotionally.

I assume that you will have another homograft put in? Dr. Pettersson at the Cleveland Clinic told me that 30-50% of time failure of these pulmonary homografts is benign -- in that its effects are tolerable and no surgery is needed. Perhaps with a second homograft you will have better luck....maybe you are thinking of going with a mechanical valve -- but that defeats the whole purpose for us picking the Ross in the first place -- not to mention issues with coumadin and pregnancy. Whatever you pick, good luck. Feel free to PM me, I know sometimes it feels like you're alone, but you're not. I have been on the same emotional rollercoaster and can definitely relate to your experience.

Brad

 

[cam4est]

Hi Kristie,
I too had a PVR with homograph. And it failed after a little over a year. Now, it was not part of a Ross procedure so we do not match on that one, but i can tell you that devastated is putting it mildly when I found out I had to have it again. The second time I had a porcine valve placed. That was a year ago and so far, so good! I chose that because I absolutely did not want to do the coumadin thing and I have read studies that state that the mechanical valve has a much higher incidence of clotting in the pulmonary position(that is also what my first cardio told me). I had the 2nd one done at the Mayo and feel very positive about the future of this valve. I am available if you want to PM me to ask any questions are share your concerns.
Good luck to you. Karen

 

[Marguerite53]

Krisite. Welcome. There is also JCDavis81 who is similar in age and had a failed Ross and has already had his surgery to fix things up. I don't think we've heard from him for awhile, but you can look on his member page to try to reach him, or at least read up on his experience through his threads. Obviously, Brad will be a great resource and comfort for you right now, too.

Hang in there. We're here whenever you need to vent or get some reassurances.

Good luck and take care. Marguerite

 

[baldstuart]

Haven't posted in a while but just received news that PV is leaking moderate to severe after Ross procedure 16 months ago. Have an appt with the Surgeon on Dec 13. Needles to say I am also very disappointed. Any input would also be appreciated.

 

[George]

I had a PVR 14 months ago. Not part of a Ross procedure. Mine was related to the congenital birth defect known as Tetrology of Fallot. I had an Edwards bovine tissue valve put in. So far, no problems I'm just glad it's out of the way. Best wishes to Kirstie & Stuart. If I can get through it, you can, too!

 

[Turkey Hunter]

The Ross was probably sold to you as a "cure" -- the perfect valve replacement that will last a lifetime. For some, this is indeed the case, but for others like you and myself, this initial prognosis as "cured" makes the failure all that more difficult to handle emotionally.
Brad

I hope no surgeon or cardio ever tries to "sell" a particular OHS procedure as a "cure".
As you state brad, for some it may last a lifetime, for others maybe not. There may even be other circumstances that will require someone with continued good reports on the status of the valves to have to have OHS again.

I just hope no one has a doc "selling them a cure" for their particular situation.

Ben