Deciding on Ross or not

[Gemma]

Hi Stephanie,
I think a lot of people have already hit the nail on the head - if you decide on the Ross procedure the most important thing is to find a good, confident, experienced surgeon who you feel comfortable with. My boyfriend Jim had a mechanical aortic valve replacement in December - the surgeon felt the Ross procedure was unsuitable, because in his opinion it gets more risky as the patient gets older, partly due to your pulmonary valve being under less pressure than the aortic and therefore possibly not coping in the aortic position. Also you've got 2 valves being operated on and potentially twice as many complications. However, this was just his personal opinion and obviously with his area of expertise, the mechanical valve was the way to go. (As Jim doesn't have to worry about getting pregnant, warfarin isn't an issue in that respect ) and Jim was happier with lifelong warfarin therapy (no problems so far - he still motorbikes, mountain bikes, swims, etc) than the definite need for re-operation in 15-20 years if he got a tissue valve.
Oh, also - we're in England - didn't have the opportunity to "shop around" for surgeons like you get in America - just went where Jim was referred. Very happy with the outcome, but it's interesting how countries vary in their approach to healthcare.
Good luck with your decision-making - whatever you choose will be right for you .
Gemma.

 

[Stitch]

Hi Lemonstuff,

The decision to do a Ross was not a big deal for me, somehow I knew it was the right thing to do. I had another heart procedure (Abliation) before I had I had the AVR. The first one of those did not go well. After that I started reading every night about AVR. In the end I made a list of 5 surgeons I wanted to talk to and asked difficult questions. The guy at the top of my list operated on me 3 1/2 years ago. I am doing very well and at 56 I am training for my first Triatholon.

 

[Lisa]

Stephanie-

Welcome. I feel the need to chime in here. There is no wrong choice.

You and I are the same age. I had my aortic valve replaced in March. I chose a homograft for some of the same reasons you mentioned. I have not given birth and don't know what I may decide in the future. I just want to point out that at age 31, re-operation is probable, no matter what your choice is. I chose the homograft because I didn't want 2 valves operated on or to face having 2 mechanical valves down the road. Read all you can. Ask questions. You'll make the best decision for you.

 

[leaking101]

Ross - July 22

Ross - July 22

Hi,

I'm in Austin, Tx and having the Ross procedure done on July 22. My doc is to be leading in the country - Dr. Oswalt.

I believe this is the best choice for me. being 45, and not interested in taking
blood thiners.... I'm comfortable with this choice.

But, as the doc told me,, we don't know till we get in, and really see. There is only a possiblity of a last minute change due to what they find .

I am so weird about this whole processs... that I consulted an astrologer to help pick the date....

Humor seems to be the best medicine of all for everything.

Good luck,, and I will let u know....

 

[lemonstuff]

Surgery is scheduled!

Surgery is scheduled!

Thanks to all the great information on these forums I have been able to make a well informed decision and have finally stopped dragging my feet and scheduled my surgery!!! I was almost giddy when I hung up the phone with the nurse... I couldn't believe I had gotten it done so easily after stressing out for so long!

I will be admitted on July 28th and am going in for a Ross procedure July 29th if all goes well. My back up plan is for a homograft tissue valve and to avoid the mechanical at all costs, since we still want to try to have a family in the next couple of years.

I'm still stressed a bit, but reading all the posts and knowing that this is a sort of extended family I can count on is making things so much easier! Thank you all for sharing your experiences and thoughts here!

Stephanie

 

[Granbonny]

Good Luck

Good Luck

To both of you..Leaking 101 and Lemonstuff.....for your upcoming surgeries this month.. Have someone to post for you to let us know how you are doing. Bonnie

 

[Raverlaw]

Lemonstuff and Leaking101,

I found this thread a little late, since I've been busy and not logging on daily like I used to when I was home recuperating from my AVR surgery.

Stephanie,

Like you I was born with a bicuspid aortic valve. I'm 49 (hanging on by my fingernails at this point ) and chose a mechanical to have the highest probability that no future surgery will be required. We all need to remember that there are no guarantees in this business, though. I've found that being on warfarin really isn't so bad at all, but I'm not planning on getting pregnant, either.

As others have stated, the choice is personal and whatever you choose will be right for you. This site really helped me when I found it about six weeks before my surgery and I hope you feel welcome and find it helpful, too. Good luck on the 29th (Stephanie) and the 22nd (Leaking101). We'll all be pulling for you as you climb the mountain and looking for you on the other side.

In case you don't know, the view from this side of the mountain is wonderful! Good luck and best wishes to you both.

 

[AJBU]

Ross Procedure 6/7

Ross Procedure 6/7

Am writing on behalf of son, since he is dyslexic in addition to having bad valve. (Says it's a cruel joke that everything he has wrong with him is not visible to the eye). He just turned 18 in May and had Ross procedure done 6/7. His aortic root was enlarged into the aortic root up to the branch and was replaced with dacron sleeve. He is wondering if any of you know how this dacron sleeve heals into place and since his enlargement went up further than they originally expected, will it take longer to heal? Goes back to surgeon for followup on the 28th. Is chomping at the bit to drive and also to get back into karate. Hated reading some of the posts on here about rejection of the homeographs, hope it's not something that happens to him. He was in hospital 6 days, released, went back to cardiologist for followup 2 days later, went back in hospital for another 6 days with fluid that had to be drained (just under 2 liters before being released, one liter first day then smaller amounts in following days). He doesn't want to return to hospital anytime soon and I sure don't want to see him go through it again anytime soon either. Does anybody have any statistics showing how often the pulmonary cadaever valve is a problem? Thanks for any answers!
Aaron's Mom

 

[Tom F.]

Hi Aaron's mom. Dr James Oury at St. Patricks hospital in Montana maintains a registry of results for the Ross procedure, with almost 2,000 surgeries being tracked. Their website is Saintpatrick.org/ihi/ross. If that does not work just enter his name in Google. You can get some information from that site, and (trust me I did this) you can call Dr. Oury's nurse and she will call you back and give you any information that you might want.

 

[sylviayasgur]

lemonstuff, mary and leaking 101...

lemonstuff, mary and leaking 101...

hi!
i'm sorry i haven't been on lately.
as far as the "right" valve goes, there is no such thing as a "wrong" valve. every valve is a right valve. that's not to take away from making a specific choice...
joey chose to have the rp (ross) because he wanted to avoid coumadin (which my dad is on for his mechanical and chronic afib, and says it's no big deal), along with longevity of the valve. since his rp, i have read quite a few different
opinions on the rp, some raving about it, others telling of stories of failure and leakage, etc. just remember, this can happen with any valve.
since his surgery joey has been strong, running, biking, swimming, golfing, and so much more. he is feeling great and fit. he has however had some bouts with afib and is on a very small dose of amiodarone (which i'd love to see him come off of).
both joey and i swear by dr. stelzer. he is brilliant, kind, patient, thoughtful, helpful, and so much more. i could not recommend a better surgeon for this procedure.
i also think that everyone's input on this thread has been so very valuable.
the hardest part is taking it all in and making your own final decision based on all the incredible info.
i wish you both all the best on the 22nd and 29th and will be thinking of you (joey's birthday is the 28th and we will be out in montauk celebrating).
please keep us posted and have someone keep us abreast of how you are doing.
stay well, sylvia