Please allow me to introduce myself...

[tenndon]

Hello everyone! My name is Don and I live in East Tennessee. I was diagnosed with aortic stenosis a few years ago. It is the result of a congenital bicuspid aortic valve.
Life was going along okay. I had lost, but then found, about 80 pounds. But I was working on getting it gone again. I was walking nearly two miles a day in the beginning of October. I went to New Orleans on a mission trip with some teens from church and have not been well since. Have had sinus infections and upeer respiratory issues. At the first of January I was diagnosed with mild CHF and place on Lasix. It has been helping but.... you know how that goes. Other than the CHF my only other symptom has been shortness of breath.
Well, after a recent echo and visit to cardioligist a cath was scheduled and that was done yesterday (2/6). They did not like waht tey saw and I had an immediate consult with the surgeon. Tentatively scheduled AVR for 2/22, just not sure of type of replacement.
After spending much of last night doing research I calleed this morning and let them know I was going to go with the Ross Procedure.
I said all that to say this---glad to be here for the knowledge and support and hope to be able to offer support and encouragement to others.

Peace of Christ,
Don

 

[Cooker]

Don,

Welcome to your home away from home. Sounds like thing are coming together rather quickly! I'm glad you are moving ahead. It sounds like it is time.

There is a wealth of support and info here as well as prayer support. I look forward to hearing how things progress.

Tom

 

[Ross]

Hello Don and welcome to our world.

I would encourage you to look at all available options. Being what this surgery is, you don't always get what you want, so having a back up plan is just good sense. You've got lots to choose from, from a Ross to tissue to mechanical, but please look at each choice carefully. Tobagotwo has a great informational thread started at the beginning of this forum. Please read it and we'll go from there.

 

[WayneGM]

You've come to the right place. Lots of info and support here. Welcome to the community.

 

[Susan BAV]

Hi Don and Welcome!

There are a few members here who very recently had Ross procedures done. They will no doubt see your post and offer you some comments based on their experiences. You would want that procedure done by someone who has successfully done a lot of them and preferably with bicuspid experience also. You also may want to research the Bicuspid Foundation because there frequently are connective tissue disorders related to bicuspid disease. You also will probably want a "plan B" valve option. Take care.

 

[ruth]

Welcome Don!

Welcome Don!

You've hit a goldmine of information and support here. Welcome!

Wishing you all the best.

Ruth

 

[Karlynn]

Welcome Don, I'm glad you found us. You have a lot to take in within a short period of time. Best wishes.

 

[twinmaker]

Welcome to the family, Don! We're glad you found us, and we look forward to being here with any help we can give. LINDA

 

[Phyllis]

Welcome, Don. You might want to look for Stretch's pictures of his recent Ross and also private message him. Let us know when the date is set for sure and we will add you to the calendar. Best wishes!

 

[PJmomrunner]

Welcome Don! How impressive that your surgeon referred you to VR.com! Good for him and good for you!

 

[barttr1]

Backup plan

Backup plan

Hey there Don,
Good luck with your upcoming surgery -- it's much better to have planned OHS than emergency OHS!

Just a clarification on some comments regarding a backup choice:
Since the Ross Procedure involves replacing your aortic valve with your own pulmonary valve, a backup valve selection is a MUST (in case your pulmonary valve just isn't quite right). Your surgeon has probably already discussed this with you...

I had a Ross done in January 2006 and all is well one year later.

Take care,
Bartt

Hi Don and Welcome!

There are a few members here who very recently had Ross procedures done. They will no doubt see your post and offer you some comments based on their experiences. You would want that procedure done by someone who has successfully done a lot of them and preferably with bicuspid experience also. You also may want to research the Bicuspid Foundation because there frequently are connective tissue disorders related to bicuspid disease. You also will probably want a "plan B" valve option. Take care.

 

[PJmomrunner]

One other teensy note about the Ross Procedure...you definitely don't want to be your surgeon's first or second or third or fourth or fifth or.... You probably get the point. Find out how many he's done and how successful he's been. (There are past threads on this.)

 

[michellep]

Welcome Don!
This forum is a great source of information and support. You may want to view picutres of Stretch's recent Ross procedure, just to prepare yourself (they aren't scary). I also believe that there is a link to a Ross surgery video that you can view. Just do a search and they should become available.
We're here for you as you trudge up the mountain.

 

[StretchL]

Hi, Don. Welcome to VR.com.

I had a Ross done 12/11/06, to correct a congenitally bicuspid aortic valve.

I'm curious what factored in to your decision for the Ross?

If you don't mind me playing devil's advocate here, I'll mention a couple of things that should be weighed heavily by anyone considering a Ross, which I learned over the course of several months of research on the procedure, including talking with or e-mailing a number of prominent surgeons both here and in Europe:

First and most importantly, the Ross is an exceedingly complex procedure from a technical standpoint. The Society of Thoracic Surgeons rates it a more complex operation than a heart transplant, for instance. I have read in any number of places that the procedure's success or failure is in large measure determined by the experience of the surgeon performing it, and that means experience with the Ross, not with valve replacement in general.

Secondly, because of the added cutting and stitching, the Ross is a longer procedure than the more common valve replacement techniques. For an otherwise healthy individual this should not be an issue, but it can become an issue if the patient has concomitant health issues such as diabetes, kidney disease, obesity, pulmonary problems, or, especially, coronary artery disease.

Thirdly, while the Ross is generally accepted as a very good solution for very young patients, its efficacy in comparison to, for instance, a stentless porcine valve is reduced if the patient is older. The porcine valves calcify much more slowly in older patients, so in this population the goal of one-valve-for-life may be achieved just as well with a simpler tissue valve operation as with the more complex Ross Procedure.

Fourth, the Ross is not recommended for Marfans patients, or patients whose primary pathology is regurgitation as opposed to stenosis.

Finally, I will say that I somewhat agonized over valve choice for a number of months, and, indeed, finally settled on the Ross. It has been called the "gold standard" of valve replacement surgery, and, statistically, has about an 85% chance of keeping one free from re-operation after 20 years. The hemodynamics of the native pulmonic valve in the aortic position are also superior to either the mechanical or tissue valves.

I'm feel very luck that, at least in the minds of a few surgeons with whom I spoke, I was a nearly ideal candidate for the Ross, and so far I'm thrilled with the results.

The proof, of course, won't come for another 20 years or so. So I'm enjoying the ride while it lasts.

I have posted a number of documents pulled from various source on my web site, http://stretchphotography.com/avr/documents , just in case you're interested in continuing your research about the Ross.

I'll be very interested to hear how things go for you!

All the very best wishes-

 

[Susan BAV]

Well said, Stretch!

 

[tenndon]

Thanks for the advice and welcome!

Thanks for the advice and welcome!

I want to say thanks for all the replies. They are all very welcoming and some are very thought provoking.One even prompted a call to my surgeon's office today.

Stretch, you asked why I am choosing the Ross. My answer would first be that I do not want to take warfarin the rest of my life. Also because of my lifestyle. I work with teenagers as part of my job as a special ed aide and also as a volunteer youth minister at church. I am also very active in missions and disaster relief ministry. I already have to pack a CPAP machine around, I don't want any more have to's!

After lots and lots of reading in the last few days and upon advice of my surgeon, Ross seems to be the choice for me. I can only pray that it is right.

Also, the date for surgery is set now. It will be on 2/22/07 in Knoxville, TN at East Tenn Baptist Hospital with Dr. Tom Pollard doing the honors.

Peace of Christ,
Don

 

[Phyllis]

Glad you have a definite date, Don and I added you to the calendar- Godspeed!