Ross Procedure Info Needed

[JimEdens]

Hi folks. I am a 48 year old male who has had a defective aortic valve since birth. This condition has led me to where I am now..... I have an enlarged heart that is now in danger of massive failure, so i am due for valve replacement surgery on the 28th of this month. Of the options that my surgeon laid out for me, I have chosen the Ross Procedure as the most viable one for me. I would, however, value very much any input that any of you fine folks may have about this procedure. Thanks in advance, Jim

[geebee]

Jim,

Welcome to VR. com. You will hear from a lot of people who have had the Ross procedure. It seems to be a very successful operation and promises to last for a long time in most patients.

Not everyone ends up having the Ross even if that is what is discussed going in. Be sure and decide on an alternate valve to be used in the event the Ross cannot be done. That way you aren't surprised after surgery.

I will add your surgery to our calendar. Best wishes and stay in touch until you leave for surgery. We will help you get through.

[PapaHappyStar]

Hi folks. I am a 48 year old male who has had a defective aortic valve since birth. This condition has led me to where I am now..... I have an enlarged heart that is now in danger of massive failure, so i am due for valve replacement surgery on the 28th of this month. Of the options that my surgeon laid out for me, I have chosen the Ross Procedure as the most viable one for me. I would, however, value very much any input that any of you fine folks may have about this procedure. Thanks in advance, Jim

Jim,

I had the Ross Procedure done at 32 -- my surgeon and cardiologist are in my signature below. I read a little bit about it and talked to some cardiologists and surgeons about the procedure, here is some of what I picked up ( some numbers vary according to who you ask ):

-- The RP is statistically best for people in the 18-40 range but remains a good idea until 55 or so. Given a 25 year average span before another operation this gives an average re-op age of 80 at 55 -- after 55 you would be better off with a tissue valve if you want to avoid coumadin ( and are not on it for other reasons ).

-- The pulmonary valve offers the best hemodynamic performance of any of the alternatives to a healthy, natural valve but the pulmonary conduit is not as thick as the aortic leading to fears of root dilation. The incidence of this may depend on:

* surgical technique and surgical skill
* the type of lesion ( an originally regurgitant - leaky - valve is more likely to leak after surgery according to some results )
* the presence of prior tissue abnormalities that lead to post-op root dilation - this abnormality seems to occur in a fraction of people with a congenital bicuspid aortic valve.

So some things to discuss with your surgeon would be the technique in particular try to find out what he will do to minimize the risk of root dilation post op. If you are comfortable with his answer and his assessment of the risk the Ross might be the best solution for you.

All the best with your surgery, please keep the forum posted -- everyone here will be pulling for you for successful surgery and a quick, uneventful recovery.

Best Regards,
Burair.

[surfsparky]

Hi folks. I am a 48 year old male who has had a defective aortic valve since birth. This condition has led me to where I am now..... I have an enlarged heart that is now in danger of massive failure, so i am due for valve replacement surgery on the 28th of this month. Of the options that my surgeon laid out for me, I have chosen the Ross Procedure as the most viable one for me. I would, however, value very much any input that any of you fine folks may have about this procedure. Thanks in advance, Jim

Hi Jim!
Welcome to VR.com.
I was born th a bicuspid heart valve and only found out about it at age 29. I was referred to a cardio who said that the leak was mild and surgery wouldn't be needed for at least 20 years! A year later though, when I was about to start my own company, my wife encouraged me to get a check up on my heart. My appointment with the cardio wasn't for another 6 months and since he wouldn't see me earlier, I was referred to another one who told me that surgery was needed within a couple of months. I did all the research (well, my wife did!) and I decided on the Ross Procedure based on my personal choice to lead an active lifestyle without the need for warfarin. I'm happy with my choice, and would choose it again. There has been one hiccup though, and that is that my donor valve (on the pulmonary) is beginning to scar over .They do not know the reason for this but it is speculated that it is a "rejection" phenomenon. Some studies suggest (not prove) that there could be a link between people that have keloid scarring and this 'rejection phenomenon". All of my scars from my childhood have been keloid and especially my latest surgery scar so I'm researching this idea at the moment.
Other than that, I have been pleased with the Ross...especially as I am able to surf again!
If you have any specific questions, feel free to ask.
All the best on the 28th,
Chris

[JimEdens]

Thank you kind folks for your replies and encouragement. I wish I had found this site a bit earlier, but better late than never. Just a bit more info on my history: I was born with a bicuspid aortic valve and had a coarctation done when I was around 3 at Riley Children's Hospital in Indianapolis. I was physically active in high school and ran track and field (half mile in 2:04). When I moved to California, I began seeing a cardiologist at Stanford Med Center, but I was still young, so I sort of stopped going after awhile. I didn't see another cardiologist until I was 38 yrs. old, and the one I saw recommended a cath be done to see if I needed surgery. It was determined at that time, that I didn't need the surgery then, but I had to have twice a year appointments with my cardiologist and yearly tests done (echo and some test where they inject blood that's been treated with an isotope). The last appointment that I had, i mentioned that I had been experiencing shortness of breath while doing menial tasks, so she had me go have another cath done. This time, the doc said it was time to have the valve replaced. My surgery will be performed at Kaiser Permanente Med Center in San Francisco on the 28th. I've been told to expect a hospital stay of about 5 to 7 days, and then home recovery. I don't know how soon after that I will feel like getting back on the computer, but I'll try to get back here asap. It's great to know that you folks have this common bond with me. Thanks again, Jim

[Heather Fisher]

Hi Jim,

You have found a great place here. I am 48 years old and had a Ross procedure done in July, 2003. I also had a coartation of the aorta repaired at the age of 4. Do you feel less alone now? Just keep researching your options on this website and you will come to make the best decision for you. I am still not regretting my decision for surgery and everything is going great so far. Let me know if I can answer any more questions for you!

Heather

[ARossGuy]

Hi Jim,
I am 43 and had my Ross Procedure done on 11/30/04. I was asymptomatic prior to having the surgery and everything went well. The surgery took about 2 1/2 hours in my case, but can vary, depending on surgical technique and other factors. My recovery was very quick and I feel great now. As you already know, you can find a great deal of information on this site and read a variety of other "valver" experiences. Best of luck to you.
--Doug

[JimEdens]

Hi folks.... I went in today for all of the pre surgery work. I talked again with my surgeon, and confirmed that the Ross Procedure is the way I want to go, with the mechanical valve as plan B. I also had blood drawn, chest x-ray, ultrasound, and met with the anesthesist (sp?) and also talked at length with a nurse practitioner that told me all about what to expect both pre surgery, and post op. I'm so glad I'll be sleeping through it, because it doesn't sound like much fun. I am to be at the hospital at 6:00 A.M. this Thursday, and will be taken into surgery at about 8:30, then the surgery itself is due to begin at 9:30. Dr. Flachsbart told us that the procedure would take several hours, and that my wife could look for a completion time of about 4:00 P.M. I'm so glad I have other family that will be there to keep her occupied while I'm in there..... I almost am more worried about her that I am about myself. I would once again like to thank the forum members here for their support and I will try to post once more before thursday morning. Jim

[chilihead]

Jim,

We'll keep you in our prayers and I hope all goes well for you. You're right it's hard on your family waiting.

Best of luck for a smooth surgery and a speedy recovery. Are you going to be at Baylor?

[skimomck]

I want to wish you all the best for your surgery and a very speedy recovery. We will keep you and your wife in our prayers. Best wishes

[tobagotwo]

The anticipation is the most difficult part, and it's almost over.

When I woke up, all I could think was that I had made it. And it was a great feeling. When it happens, enjoy it.

Best wishes,

[JimEdens]

Well folks.... it's almost 10:00 PM on the night before my surgery, so the next time I talk to you, I'll be in recovery at home. I'll be at Kaiser Permanente Hospital in San Francisco. I want to thank all of you who posted here for the words of encouragement and good wishes. You all have made this little adventure a bit less scary. Hope to chat again soon, Jim

[PapaHappyStar]

All the best for your surgery and recovery Jim,

I got my first choice in cities to recover from OHS in NYC but San Francisco was a very close second.

Burair

[geebee]

Jim,

My thoughts and prayers will be with you. Please take care and I hope it turns out the way you want.

Looking forward to info on your surgery.

Hugs.

[Wise]

Here's hoping for a successful surgery and speedy recovery.

[JimEdens]

Hi folks, I'm at home recoververing now, after a successful surgery. The Ross procedure that I intended to have done, couldn't be completed due to irregularrities between my aortic and pulmonic valves, so a carbon fiber valve was used to replace my aortic valve. I'm now going through the process of getting the coumidin regulated to a therapeutic level, and just trying to heal in general. Each morning that I wake up, I'm so stiff that it feels like someone took batting practice on my ribcage, but after about an hour, I start feeling better. I want to thank all on this site for being here to answer questions, offer comfort and good wishes and for just knowing many of you have gone through the same thing I did. I'll post more when I feel up to it. Jim

[PapaHappyStar]

Jim -- You sound very good, glad the surgery went well -- Congratulations and best wishes for your recovery. Burair

[Paul_N]

Glad you're home and glad to hear things went well.

[geebee]

Welcome, welcome home. So happy to have you on this side of the mountain. Sorry you couldn't have the Ross procedure but I am sure you will do fine.

Did you get the license plate number of the truck that hit you :D :D

Take care and stay in touch.

[bvdr]

Jim, I'm so glad to hear that you are back home and doing well. I'm sure you were disappointed about not getting the Ross procedure but coumadin just isn't so tough once you get through the learning curve.

[Mary]

Jim,
I'm glad you're home and on the fast track to recovery. It's the first time I've heard of the difficulty you experienced between the aortic and pulmonary valves. That's the beauty of sharing experiences; we all learn from each other!
Take care and post more when you feel up to it.
Mary

[JimEdens]

Hi Folks, This is the first time I've ben able to post anything for a few days. I spent this past weekend in the hospital because saturday morning, my heartbeat went from my normal high 70's, to 140. I went to the ER and they had to cardioversion me. I was ok after that, but they kept me there overnight for observation and I felt pretty good, but then Sunday morning it happened again. They had to repeat the shock and then started me on a new drug called Amiodarone, that is supposed to help keep it from happening again. They took me off of 2 other drugs (lisinopril and atenolol) that I had been taking since my surgery. I feel better now, but I am a bit concerned about the possible side effects of the Amiodarone that my cardiologist told me about. Is anyone in the forum familiar with that particular drug? If so, I would appreciate any info you could share. Thanks, Jim