I am facing aortic valve replacement soon, with maze procedure for afib. The more I read the more confused I get. I thought I would have more time but last angio-cath showed that condition had rapidly deteriorated and I now have appointment with surgeon this Wed. I am at point that I cannot even make bed without so much breathlessness and rapid heartbeat that I have to rest several minutes to get over it. I am seeing cardiolgist at St. John's in Springfield, MO and will see cardio-thoracic surgeon at same hospital. My neighbour had these same two drs. when she had stent done one day and mv replacement next day. Surgeon went thru side to do valve replacement. She was 77 yrs old and had waited so long for this surgery that they did not know if she would survive. She did and a year later is doing great. I have faith that these drs. are very good and that they care about their patients. The more I read though, seems to indicate that due to this being a congenital problem that I should seek care at a facility that specializes in this. What are thoughts and experiences? I am also becoming very confused about type of valve, mechanical vs. biologic.. I guess it really is very late to think I have many options as I am beginning to feel like I should have had this surgery yesterday!! I just want my life back. I have been going downhill for about 15 years and now about all I can do is sit. Really would appreciate comments. Thanks, irish
need replacement for congenital bicuspid aortic valve-confused
- Thread starter irish46
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Is it just your valve or do you have other heart issues or have had other heart surgeries? I would think unless you have other issues, you would be fine going to a hospital that does alot of valves and aortas and mazes and don't necessarily need doctors (cardiologists or surgeons) that specialize in Adults with CHD. Have you been with your current cardiologist all this time?
As for valve choice, do you mind sharing your age, since that can play a role in it.
As for valve choice, do you mind sharing your age, since that can play a role in it.
As Lyn mentioned, your age might influence your valve choice. You're also having a maze procedure so the possibility that you might need coumadin for afib could also factor in to your decision.
Several Missouri members have had replacement in Springfield. Seeking a St. Louis hospital or one in Columbia might put you out of network for your insurance--perhaps not.
Dr. Kouchoukos performed mine at Missouri Baptist in St. Louis, and I would recommend him highly.
After you meet with the surgeon on Wednesday, maybe you will post again and let us know what he is recommending. In the meantime, try not to worry. Things will get better, and we're here to help you.
Several Missouri members have had replacement in Springfield. Seeking a St. Louis hospital or one in Columbia might put you out of network for your insurance--perhaps not.
Dr. Kouchoukos performed mine at Missouri Baptist in St. Louis, and I would recommend him highly.
After you meet with the surgeon on Wednesday, maybe you will post again and let us know what he is recommending. In the meantime, try not to worry. Things will get better, and we're here to help you.
ALCapshaw2
Well-known member
It's difficult to answer your questions without some more information.
It would be helpful to know your age as Lyn suggested.
It would also be helpful to know how much experience this surgeon has performing the type of surgery you will need.
And it would be helpful to know if you have any signs of Connective Tissue Disorder, along with how much experience your surgeon has recognizing such tissues and how to treat them.
The surgery he performed on that 77 year old lady is more complex than the usual valve surgery which indicates his skills are probably above the average bypass / first-time valve surgeon, but it would help to know how many such surgeries he performs.
From what I hear, the TOP Aorta Surgeon in MO is Dr. Kouchoukos in St. Louis if you are interested in a second opinion (and have the time).
'AL Capshaw'
It would be helpful to know your age as Lyn suggested.
It would also be helpful to know how much experience this surgeon has performing the type of surgery you will need.
And it would be helpful to know if you have any signs of Connective Tissue Disorder, along with how much experience your surgeon has recognizing such tissues and how to treat them.
The surgery he performed on that 77 year old lady is more complex than the usual valve surgery which indicates his skills are probably above the average bypass / first-time valve surgeon, but it would help to know how many such surgeries he performs.
From what I hear, the TOP Aorta Surgeon in MO is Dr. Kouchoukos in St. Louis if you are interested in a second opinion (and have the time).
'AL Capshaw'
Welcome to the zoo ... I had congenital BAV and also A-Fib ... I had my valve replaced in 2006 and Ablation for the A-Fib ... As far as valve choice there are many ways to look at it and even more opinions ... talk to your cardiologist and surgeon and go from there ... glad you found us and with no other health issues I am sure you will do fine.....Oh, I'm doing great and life is good
... I had congenital BAV and also A-Fib ... I had my valve replaced in 2006 and Ablation for the A-Fib ... As far as valve choice there are many ways to look at it and even more opinions ... talk to your cardiologist and surgeon and go from there ... glad you found us and with no other health issues I am sure you will do fine.....Oh, I'm doing great and life is good
dl_mooney
Well-known member
Would say OnX. Coarse im biased as I have one Mitral Valve.Its your body & you should have the final decision.
MarkU
Well-known member
I had a congenital bucuspid valve that was first diagnosed when I was five years old. Fortunately I had no symptoms until I was 47 when I was in a very similar situation to what you are experiencing and had trouble functioning due to chronic fatique and shortness of breath.
Got a St Jude mechanical valve in December 2000. I chose a mechanical valve primarily to minimize the possibility of repeat surgeries down the road. My surgery & recovery went fairly well, but it's not something I want to repeat unless absolutely necessary.
I've been on Coumadin since then, but it has been very managable and not much of a problem.
I've led a full and active lifestyle since my surgery. No complaints.
Best of luck to you.
Mark
Got a St Jude mechanical valve in December 2000. I chose a mechanical valve primarily to minimize the possibility of repeat surgeries down the road. My surgery & recovery went fairly well, but it's not something I want to repeat unless absolutely necessary.
I've been on Coumadin since then, but it has been very managable and not much of a problem.
I've led a full and active lifestyle since my surgery. No complaints.
Best of luck to you.
Mark
Welcome to the Froum, Irish. With BAV disease, there are often associated connective tissue issues such as a dilated aorta that may require a level of treatment expertise usually found at major heart centers. Valve choice is subjective. Whatever you choose will be right for you but the choice involves many factors such as your age, etc. Keep on posting and give us more information about youself.
Best wishes,
Jim
Best wishes,
Jim
Thank you all for your input. I thought I would have more time to think this over, but I am at the point that I cannot even take a shower without getting so out of breath and dizzy that I have to rest before I can dry and again before I dress. I called cardiologist today to get his input. He said to take more Lasix and if I felt I needed to go to ER to go ahead. As long as I sit I am okay so I will probably wait til appointment with surgeon tomorrow, but, as Dr suggested will be prepared to stay. I am feeling like I am on a roller coaster and cannot get off. I am just so tired. This all went so fast!!
Mileena46
Well-known member
Irish,
I can very much feel for you. I went several days feeling as you do. I was fine as long as I wasn't up and moving around, but when I tried to walk across the room I couldn't breathe!
When I finally went in for a check-up I didn't get to return home either. This may be what is going to happen with you...just know this....once its over life is sooo much better! AND it's not as bad as I worried it would be. If all of us on this board can go through it...so can YOU!
Good Luck!
Mileena
I can very much feel for you. I went several days feeling as you do. I was fine as long as I wasn't up and moving around, but when I tried to walk across the room I couldn't breathe!
When I finally went in for a check-up I didn't get to return home either. This may be what is going to happen with you...just know this....once its over life is sooo much better! AND it's not as bad as I worried it would be. If all of us on this board can go through it...so can YOU!
Good Luck!
Mileena
ALCapshaw2
Well-known member
One of our Famous Sayings is:
"The Worse it Gets, the Faster it gets Worse"
This is especially true for Aortic Stenosis.
Do you have someone who can keep us informed if you are admitted to the hospital for surgery?
Do you have one or more people lined up who can stay wity you at the hospital to double check that all medicines and procedures are proper (and not duplicated)?
'AL C'
"The Worse it Gets, the Faster it gets Worse"
This is especially true for Aortic Stenosis.
Do you have someone who can keep us informed if you are admitted to the hospital for surgery?
Do you have one or more people lined up who can stay wity you at the hospital to double check that all medicines and procedures are proper (and not duplicated)?
'AL C'
BlindFaith
Well-known member
Good luck Irish...
My prayers and thoughts are with you... soon you will be at peace with the whole procedure and I just know that you will feel so much better with the new valve. I was reluctant to submit to the surgery (felt I had no symptoms) but now 3 months later must admit that I was really not well before...
Best of wishes to you Irish as you travel this journey. I'm 10 years out today and just a couple of years older than you, so I can empathize and yes, there is light at the end of that tunnel.
dcpickle
Well-known member
Irish, be encouraged... When you do have surgery, you will probably notice a big difference in your energy level immediately, even while you're recovering from surgery.
Good luck. And, there are lots of people here who have all gone through it. We can all testify that there is life after heart surgery. Great life, in fact!
Good luck. And, there are lots of people here who have all gone through it. We can all testify that there is life after heart surgery. Great life, in fact!
I'm wondering if Irish was admitted and has had surgery???
Reading her description of how she feels, surgery might be warranted ASAP.
Reading her description of how she feels, surgery might be warranted ASAP.
Hope someone can post for her...
Hi all
Thank you for interest. I went to my for my appt. Wed. and told dr. how awful I felt. He said he could not get me in til Monday for surgery and I may as well go home and come back Sun. for admit.. Fortunately he sent me to pre-admit and blood work was done. PT 36.7 should be 12-15, INR-forgot what it was after they told me my hg was 4.6!! I was admitted and am now on sixth unit of blood. Had CT night of admit. which showed nothing and tomorrow they will do endoscopy and colonoscopy, can not figure out where blood is coming from. I told the dr. I was feeling terrible!!! I thought I would die before blood started. My heart was beating so hard I though it come thru chest and I felt like I was sinking into a deep hole. Needless to say surgery postponed til this situation is under control and due to afib cardio says he will start me on Aggrenox and not put me back on coumadin. Since I had stomach bleed last month and required two units of blood, this wise decision. Amazing how well you can feel when you have some blood to pump!!!
Irish
Thank you for interest. I went to my for my appt. Wed. and told dr. how awful I felt. He said he could not get me in til Monday for surgery and I may as well go home and come back Sun. for admit.. Fortunately he sent me to pre-admit and blood work was done. PT 36.7 should be 12-15, INR-forgot what it was after they told me my hg was 4.6!! I was admitted and am now on sixth unit of blood. Had CT night of admit. which showed nothing and tomorrow they will do endoscopy and colonoscopy, can not figure out where blood is coming from. I told the dr. I was feeling terrible!!! I thought I would die before blood started. My heart was beating so hard I though it come thru chest and I felt like I was sinking into a deep hole. Needless to say surgery postponed til this situation is under control and due to afib cardio says he will start me on Aggrenox and not put me back on coumadin. Since I had stomach bleed last month and required two units of blood, this wise decision. Amazing how well you can feel when you have some blood to pump!!!
Irish
