Newly diagnosed

[carlasue]

My 50 year old husband was just diagnosed with a bicuspid aortic valve. His symptons were atrial fibralation, exhaustion causing "severe" aortic insufficiency. His cardiologist has advised a valve replacement within the next two weeks! We are new to all this
Any advise from you "old" pros on choices of valves, procedures and surgeons in the Raleigh, NC area?
Thanks,
Carlasue

 

[Ross]

Hi Carlasue and glad to see you posting, welcome to the forum!

I'm sure you've read around about valves and choices, if not you may want to do so. The decision is a personal thing and whatever the choice may be, it will be the right one. The only wrong choice is to do nothing.

I'll leave the others get into the meat and potatoes of all of it if you need more info.

Again welcome aboard.

 

[Bryan B]

CarlaSue,

I just had my aortic valve replaced at Duke Medical Center. I live in Nashville now, but I grew up in Cary and lived in the area for 30 years. I came "home" to have my family around me while going through the surgery. My surgeon was Dr. James Jaggers. His specialty is congenital heart disease and valve surgery. He is also the best person in the region if you decide on having a Ross Procedure (that is what I had). Several other people on this board have used Dr. Glower as their surgeon from Duke, and he has an excellent reputation. Duke is rated as the 4th best heart hospital in the nation, so I really don't see any reason for you to travel. It sounds by your husband's symptoms that the sooner he has this done the better. I'm sure there will be some others who have used Dr. Glowers who will be by to give you their experience with him. If I had to have surgery again, I would not hesitate to go back to Duke!

 

[NC-Cutie]

You are right at the best hospital in NC to have heart surgery. I live in Lewisville NC which is right outside of Winston-Salem. I am 8 weeks post op Mitral Valve Replacement that was done at Duke Medical Center by Dr. Donald Glower. He is the #2 CT Surgeon in the country. I high recommend him. I was very pleased with the care that I received from him and his staff as well as the staff at Duke after surgery.

 

[bvdr]

Hi Carlasue,

Welcome to this forum. I'm sorry your husband and you are dealing with this right now but we live in a time with some wonderful choices and you live very close to excellent medical facilities. I had my mitral valve replaced at Duke last year by Dr. Glower. I have yet to hear anyone say anything negative about Dr. Glower.

About valve choice........alot of things go into consideration. Age is a factor since a tissue valve placed in a younger patient wears out faster than the same valve placed in an older patient. Anti-coagulation therapy is considered by many to play a big factor in choosing a valve. I don't know if your husband's atrial-fib is permament or not but if it is then a mechanical valve may make more sense.

For most medical issues I like being very involved about the decisions but as for valve choice....I thought I should listen to my surgeon who was the one putting it in and had much more knowledge in that area than I did.

Two weeks gives you plenty of time to ask questions and become a little more familiar with valve replacement. We will be here before and after so make yourself comfortable and feel free to browse old threads and don't hesitate to ask for assistance if you need to.

 

[McCln]

Carlasue

Carlasue

Sorry to hear about your husband. I agree with the others, the younger ones are usually put on mechanical, unless they do not want to take coumadin, a blood thinner everyday. Older people are usually opted for the tissue without taking coumadin everyday. But the choice is yours and making an educated decision is good when you have some time. I was born with a congential heart defect, heart murmur. It got worse years later and the aortic valve was replaced with a St. Jude's mechanical one. I hope to never have surgery again. You talk with your husbands' surgeon about the options open to him and come in with all the questions. We all have experience and wisdom to help. But education is the key. Get educated on your husbands' condition. We all will pray for his health. Take care and come in as often as needed.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[carlasue]

Thank you for your kind and supportive words. It is nice to know that there is a light at the end of the tunnel and maybe we will get there some day!
We met with Dr. Glower and I was very impressed. We are scheduled for 4/23.
I am dealing with anxiety attacks for the first time in my life, but my husband seems fine! Trying to sort out how he feels about the different valves and coumadin seems to be the big decision now. While he doesn't want to go through this again, he hates the thought of taking coumadin. He works around sheet metal and also worries about the expense of all of this.
Can some of you tell us what your post op experiences were like? Any words of wisdom? Were you able to go up and down stairs as our bedroom is upstairs. . Did anyone develop these wierd attacks of anxiety when thinking of what your loved one would be going through?
Carlasue

 

[Ross]

Post surgery he will be very weak. You may want to consider not using stairs for the first one or two weeks. People have done it and it takes alot out of them to do so. Generally post surgery, your very weak, take frequent small naps, try to do as much walking as possible, taste is all messed up so he probably won't want to eat very much, He may have difficulty sleeping. Seems we sleep for one or two hours then were up for that or more. In general is whole body will be going through a reset phase. It's best to get a recliner on the first floor and make a bed out of it with lots of pillows. Only he'll be able to determine what he can and can't stand to sleep on.

The anxiety is normal, but don't let it rule you. What is about to happen is going to secure a future for the both of you. Without it, there is not much of a future left, it's that serious. Your probably worrying more about it then he is. Rest assured, he's scared too! If he's not, I'm wondering about him.

I've stressed over and over again that Coumadin is not the evil that the medical community paints it as. It really isn't that big of a deal. If he were to get cut, he'll bleed a little longer, but that's about it. The bleeding is treated the same as with any other, direct pressure until it stops. The down side is the frequent testing involved. If you read the Roundtable Symposium that bvdr posted, he'll likely be on Coumadin anyway at some point down the road.
I just want you to gain as much "Good experienced" advice from those that live this life, not the hearsay of those who do not.

 

[Tom F.]

I had my OHS at age 49, in 2002. When I came home I was tired and weak, but stairs did not bother me all that much. I was not running up and down mind you, but I could get to our second floor to shower etc easily. The valve issue is always THE difficult decision. I would suggest that you at least look at the Ross procedure as a possible option. Good luck, you will see that everything will be fine once its over.

 

[ALCapshaw2]

Welcome to our world Carlasue!

Is your husband in constant Atrial Fibrilation? If so, is he being treated for it? Typical medicines include some type of Beta Blocker to control the Heart Rate and Coumadin to prevent Blood Clots from forming.

IF his A-fib is permanent, there are surgical procedures that can be done at the same time as his Valve Replacement surgery. If it cannot be controlled surgically or medically, then he will need to be on Coumadin (anticoagulation therapy) permanently regardless of what type of valve he selects.

There are some NEW mechanical valves that have better 'fluid dynamics' (less turbulence and less likely to produce blood clots) made by On-X in the USA and SORIN which is made in Italy. St. Jude also has an 'improved' mechanical valve (Regent if I remember the name correctly). Ask Dr. Glover if he is familiar with any of those options.

At age 50, he is in a 'gray area' regarding mechanical vs tissue valve. Either is a reasonable choice. It boils down to which set of negative aspects you and your husband can best live with. I wanted a Bovine Pericardial Tissue Valve which does not require Coumadin (unless there is permanent A-fib) and is approaching 20 years of service in some earlier recipients. I got a St. Jude mechanical because of 'other difficulties' that appeared after opening me up. I am fairly active and do a LOT of yard work with mowers and Bow Saws. My cardiologist cautioned me that if I cut an ARTERY, it is 'all over'. Normal cuts and bruises are not much worse than if I were not on Coumadin.

There is a LOT of good discussion and debate in the Valve Selection Forum so please look that over as well as the Pre-Surgery and Post-Surgery Forums. That's a LOT of reading, but you will get to see just about every side of the issue and how different people view the options.

The MAIN thing to remember is that we ALL SURVIVED and are living better lives as a result of whatever valve choice we made or was made for us. Surgical SUCCESS is typically better than 97%, especially for first time patients under age 60 and DUKE is one of the Very Best Hospitals.

It doesn't surprise me that your husband is less scared than you. HE is ready to FEEL BETTER and wants to get on with it. At that point, surgery is just something that needs to be done to get better, and he gets to 'sleep' through it. The HARD part is for the rest of the family who must sit and wait through it (and tend to the patient during recovery). SOME patients get a little 'grumpy' afterwards but it seems that the ones who are prepared and actually ANXIOUS to 'get better' also do better during recovery. A Positive Mental Attitude goes a Long Way towards a smoother and better recovery. WE can help you out in that department. Feel free to ask any and all questions that come to mind. Remember, we've all 'Been There and Done That' and are still here to talk about it!

Best wishes,

'AL'

 

[Marvin]

Hi Carlasue

Welcome to this board. I belive you will find it very helpful for you and your husband in the next few weeks. I know it was a real blessing for both Marvin and me and continues to be.

As for the valve choice that your husband has to make I suggest that you both do some research on this sight. It helped us out alot to hear what others had to say. But in the end I agree with everyone on here that it is a personal decision and once made it will be the right one for your husband. Plus and big relief once you make that decision. Marvin and I both did alot of research in the short amount of time that we had plus prayed alot for guidance and once the decision was made felt relieved and assured that we had came to the right one.

We will be praying for both you and your husband

 

[RCB]

Tissue vs Mech.

Tissue vs Mech.

After spending weeks researching data, I have come
to these conclusion:
1. All the newest generations of mech. valves will last longer than the pts.
2. They all statistically about the same.
3. The newest mech. valves are almost as good hemodynamically as tissue valve and then only marginally less so, except for the clotting danger where tissue are clearly safer.
4. Ten years after a tissue AVR, 25% have to be on warfarin. Ten years after a tissue MVR 66% have to be on warfarin.

The real question you have to ask yourself is what do you fear the most:
If it is warfarin therapy- then go with tissue.
If it is another surgery- then go with mech.

Also realize that medicine is still an art and not a pure science- there are no guarantees.

 

[carlasue]

Thanks to all for the helpful information. The fibrallation is a very recent thing (it's what sent him to the doctor two weeks ago) He has become progressively weaker and very exhausted most of the time. I know he is hoping that the fibrallation will stop after surgery and if he goes with the tissue valve would not have to take the coumadin. Are there any studies on how the body handles say 20-30 years of coumadin?
All of the information you have given us is very helpful especially as he becomes more and more exhausted. We are running out of time to do much research to make these decisions as only 10 days til his surgery. So, your posts and prior experiences are very important to us. Research is a wonderful thing granted you have the time to do it. He first learned of the valve defect at last year's physical and was told not to worry about it. When he went back to the doctor this year with fibrallation and exhaustion, he was told to have surgery within two weeks! I didn't think things would change this quickly.
Carlasue

 

[Susan BAV]

Hi Carlasue (and husband) -

You've found the right place! You have probably already been doing VR.COM searches on specific questions you might have. And be sure and ask whatever questions you want in the forums; there are lots of things that we have learned from each other's experiences in this way, both pre-op and post-op! Best wishes to you and your husband!

~Susan W

 

[dawnwit15]

Just breath

Just breath

Hello Carlasue & hubby
Welcome aboard. Best wishes to you both. This is a very stressful time and I think you may be experiencing the anxiety because the diagnosis was so sudden. You probably feel there is no time to prepare. Sometimes it's better this way, having too much time to think about the surgery is even more stressful. Just remember, how healthy your husband is going to feel after the surgery & recovery period are over. We have all been in your shoes and share in the emotions and fear. You are both in my prayers for a successful surgery. It's not a fun ride, but the ride does have an ending in site. Try to stay positive, it will help with your hubby's recovery. The first week or so after surgery I did not attempt to climb stairs, I stayed on one floor in the house. He will have limited range of motion for awhile. It takes a few weeks for the sternum to heal. The pain meds help alot. After the first few weeks he will be walking around and starting to gain independence again. It is a slow process so be patient.
"This too shall pass"
This site really helped me get through the days leading up to surgery. Lean on this site for support especially when your husband is in recovery. We are all here for you.
Best of luck.
Dawnwit15

 

[carlasue]

I have shed so many tears at the keyboard this week and they have been joyful tears at the amazing kindness of so many "strangers" Thank you to all of you who are praying for us and for the person who went to all the trouble of getting this thing started. We don't feel so alone anymore. This forum has been such a Godsend to us!
Barry is still undedcided about the valve. The doctor indicated that the Ross procedure wasn't really an option and I can't remember why. Does anyone have any more words of wisdom on if you could go back and do it again would you pick a different valve or are you happy with your decision? The only person that we know that had this operation went with a mechancial and doesn't like it because it makes too much noise. Barry works in a very loud environment and we are a product of the 60's era music, so we don't think that would be a factor! My anxiety is improving after the reassurance that I have received here. I am starting to see it as a new beginning to the exhaustion that has been part of our lives for so long. So, thanks again..we appreciate you all.
Carlasue

 

[Susan BAV]

Hi again, Carlasue and Barry -

I'm only six months out (and 42 years old) but, so far, I'm extremely happy with my choice, a tissue valve. The only medications I have taken for the last three months are aspirin therapy and a thyroid medication. I don't have to take anything else, even hypertensive medications that I'd had to take for the last decade! These tissue valves don't last forever, though. So there's that. I can hardly explain how much better I feel than I did pre-op though!

There are so many intelligent and widely varying opinions on this forum regarding valve decision and such. There are many factors to consider. One thing that impressed me when I was making a decision, however, was that it's a good idea to put in a valve that your surgeon likes and that he is very experienced with "installing." If you search the Valve Selection forum, you will find a great deal to read on the valve choice issue.

Best wishes, ~Susan W

 

[xtremlee]

Hi Carlasue
I had the same thing your husband has. I had my aortic valve replaced on April 1st 04 and I also had a maze for the a-fib. If afib is a constant problem for your husband I would ask about the Maze. I have only had on brief runin with afib for about 4 hours after my surgery. I am in normal sinus now. The afib can be far more disabling than many thing that I have faced it is terriable. I would hate to know that I under went surgery for the valve and didnt get the maze and wake up in afib. I am 34 and the most problem I have is all the soreness 13 days post op. Im a big guy 6'1" 236-240 pounds when I had surgery. I am down to 223 lbs now. If you have any questions just send me a PM.

 

[carlasue]

Xtremlee,
Can you have the maze and do the minimially invasive? Also, what kind of valve did you go with? How are you feeling now?
Carlasue

 

[xtremlee]

I think you have to get the invasive surgery to do the maze and valve.
I got a st judes valve. I feel alot better with no afib and a new valve. I am just sore sore sore. I take pain meds every 4-6 hours as needed. It is worth the surgery to get rid of the afib everything else is just a bonus. I have come along way I still have a long way to go. But if its gonna make you feel better just do it. I was really scared to do anything heart cath scared me to death. So I know if I can do it your husband can also. I am just 34 and I can now look forward to the rest of my life. I have to give all the glory to God with out him I never could have went through this surgery.