Compiling a list of questions for my surgeon

[Tim F]

Hello, and thanks for being here to listen and advise!

I'm 47 and have been monitoring a bicuspid aortic valve for sixteen years, along with a prolapsed mitral valve. Last month at my annual echocardiogram, my cardiologist said that the stenosis of my aortic valve seemed to have progressed significantly, and he sent me in for a right and left heart cath. That confirmed the echo, and last week I met with a surgeon, Dr. Robert Salley at St. Joseph Hospital, Lexington.

Dr. Salley told me that the valve opening is reduced to about half of normal and is regurgitating significantly, that the aortic root is enlarged "about a three on a scale of one to ten", and that the left ventricle is becoming dilated. He recommended aortic valve replacement surgery. Because of the need to evaluate the aortic root and the mitral valve for repair or replacement, this would need to be full open-sternum surgery. He said the surgery does not need to be done "this week or next week," but that he would recommend it in the next three to six months. We are currently planning to schedule for mid-August, after accompanying my parents on their fiftieth anniversary cruise to Alaska.

Okay, here's the thing. Dr. Salley laid out the arguments for tissue vs. mechanical valves, then said, "Okay, you need to do some research and thinking, then call my office and tell them what kind of valve you want and when you want to schedule it."

I appreciate him giving me so much agency in the decision, but having started looking online, including on this forum, I feel like I don't have enough information about my own condition to make this decision intelligently (what does "3 on a scale of 10" mean? He mentioned "3rd generation tissue valves," but which one in particular is he proposing?). I think I should make an appointment for another consult with Dr. Salley, but I want to make sure that I know the right questions to ask to get the information I need.

So that's the input I'm asking from you all: What facts and figures about my own heart condition do I need to know? What questions do I need to ask him about the particular valves he is proposing?

Thanks so much, and I look forward to lots of helpful conversation!

 

[Jason]

Hi Tim, I think that the decision to go with tissue or mechanical is a very personal decision, to which there is no real wrong or right answer. I am an engineer by training, and as such I wanted to know the right or wrong, black or white answer, and looking back on it I don't think there is such a thing. I can tell you that at 36 years old I went with the mechanical valve, in part to give a higher chance of avoiding future surgery (nothing is for sure) and in part due to the aortic aneurysm that needed repaired as well. I did go back and forth a lot with the decision, and read a lot to find the right answer for me. I hope that you also arrive at the right answer for you, and know that in any case your new valve will be better than the one you currently have!

 

[Greg a]

Tim , a heart felt WELCOME to our OHS family glad you found the site as Jason said the decision is VERY personal, there is a wealth of knowledge here for the future ..... I have highlighted a link that may aid with questions


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[neil]

hi tim.....do your research on here and ask about ok, dont try to get to swayed by personnel opinions,thats all there are, i would never advise anybody what to choose as its a personnal thing,after awhile of looking and thinking you will come to a choice, whichever that may be is the one for you...........good luck and remember which ever you choose is a whole lot better than the one you got now,

 

[Marguerite53]

Hello and welcome to this amazing community.

You are about to enter into some mind-numbing research -- beware! ;o)

I've only got a second here, sorry, but I'll come back.... my first reaction to your situation was that you be particularly clear on how all your eventual choices might "work in concert" for you. IF they intend to do more work while they are in there, it's all on different areas of the heart (top, bottom, side, etc..) Surgeons think about what they may have to go back in, someday, and do. So I would want to know what the surgeon has in mind to do "this trip" and how it might affect future issues that you have. That knowledge might help you decide more clearly on your valve choices.

You are going to LOVE the Alaska trip.... It's phenomenal -- we did it 10 years ago. You should look into some of the side excursions and plan ahead for what you want to do. And try not to eat too much -- ha!!

So glad you found us! I'm a bovine tissue valver and happy as can be with mine -- I think it's probably second generation??
Marguerite

 

[LeakyUK]

I have some minor issues for which I refused surgery since I can happily live with them. My surgeon quickly picked up the fact that I preferred to avoid any form of surgery if possible. Had I gone tissue I would already be stressing over the re-op.
Mechanical works for me, and INR management is going well. You have already lived with knowledge of surgery for years so may approach this differently.

 

[Greg a]

Just to add ,,,,you don't have to quit eating bacon if you pick a pig valve but you probably should because of the high sodium content ...nor do you have to surrender your steak if a cow valve .....BUT you should quit mechanical bull riding ....well that is a whole other story there

Seek guidance from above and

God Bless:angel:

 

[NealR]

Tim,

I was in a very similar situation as you just two years ago, and almost the same age. Surgeon advised the aortic for sure, had to be replaced, and mitral, probably would be replaced as well, and 3 months later, he did exactly as he said.

I asked which valves he would go with, and he said without question, Tissues. But he also said, I would need "one more surgery". He advised he has a patient who has 20 years on a tissue, however, also went on to advise they should now be looking to have that replaced. He also, said the second surgery is indeed, harder.

At your age, like mine, I took my chances, but I think either way, you rob peter to pay paul. For tissues, you neccessarily, have to take a drug thinner, and you don't have to worry about the clicking in your chest. But you do have to worry that at some time, they will probably have to be replaced, meaning another surgery.

For mechanicals, you monitor your INR levels, watch your diet to some degree, and be mindful about accidents that could lead to excessive bleeding. For tissues, you worry about every murmur you GP hears and sends you for an echo, every change in your BP, or some sort of heart complication that could impact your valves.

In short, neither is a perfect fit, but both work, and pretty well too. For me, the deciding factor was taking higher levels of blood thinners, due to the mitral valve, and buying myself time for new technology.

The best news in this, is that as bad as OHS is, surgeons have indeed improved this. Horrible as it sounds, you bounce back.

Good luck in your decision.

 

[Greg a]

Tim, saw you post this and thought I would add it to this thread as that is a sticky and many members will not read it on a regular basis

One of the things I've not found discussed much here is stairs. We live in a three-story townhouse: bedrooms and shower on the third floor, kitchen and dining room (with half bath) on the second floor, TV and recliner on the ground floor (no WC). Right now (pre-op), I run up and down these stairs a million times a day. It looks like I should expect to be able to do stairs post-op, but to be slowed way down.

Do I need to think about consolidating onto one floor? Or are a few slow stair trips a day actually a good form of rehab? I'm currently 47, vigorous, and not overweight.

My family moved my recliner and TV up a level so I was on the two piece bath level and for the first few nights I slept upright in the recliner (my dear wife took the couch) then whenI could I attempted the stairs had a shower and finally found our bed

Put recliner in a search and see the number that have slept there

 

[mafandco]

I am in the same situation as you are. I am 40 and will need my aorta replaced and my ascending root fixed when I don't know yet, but I am planning now just in case. Seems that valve selection is very personal and I would have to agree. Every person is different. I myself am leaning towards a tissue valve. I drag race and the NHRA will not allow me to race if I am on a blood thinner. Plus I can't even remember to take a multi vitiman every day so taking a thinner would be a problem. Surgeons now are replacing valves via catheter, so if and when I need another valve it should not be as big of a problem. I am not sure it they will be able to do that if a mechanical valve needs replaced in the future. As of right now I know of three types of tissue valves; porcine, bovine and equine. I do not know to much about the equine, but there are a couple of people on this board that have chosen it. On the question about the 3 out of 10 I am not sure what that really means. I know when your AVAI is .8cm2 that it is a trigger point for recommended surgery. I am new to this board so if I am wrong in anyway I am sure someone will catch me on it.

 

[Marguerite53]

On the question about the 3 out of 10 I am not sure what that really means.

Yes, I was wondering what Tim meant, also. If you were speaking of "generations" of valves, then there is no 10. Companies who make them are constantly working to improve the valves -- all valves! The bovine tissue valves now come with special treatments so as to prolong their life inside you. I think that's what you mean by "generations".... actually just new designs -- new improvements.

Back to the questions to ask. Be sure, if you suddenly find yourself "set" on a particular valve that you have read about, that your surgeon has used them before. They handle differently. At least, my surgeon asked me specifically not to choose a particular style (can't remember what it was) because he kind of fumbled with them! :eek2: I was actually delighted in his human honesty and respected his comment.

As far as valve choice goes, it is very personal. For me, I knew at once that I simply would never go with a mechanical unless I was told it was my only option for success. I had several "reasons" but they are mine and should not concern you since we are 2 different people. I make many choices instinctively -- that is simply how I function. What you will find in this arduous process is that you will learn a lot about yourself. This is good. LISTEN to yourself, okay?

Truly, your head will start to spin with all the available information you are now gathering. Take a break here and there -- let it digest. No choice is really guaranteed. But most of us here seem to have managed to muddle through this journey and come out singing!! It's all good! It's life-giving.

Good luck with your surgeon and don't hesitate to get a second opinion, if only to help you better understand the first opinion!

:smile2: Marguerite

 

[Luana]

I was a bit older than you when I had my AVR and was leaning towards a tissue valve. The deciding factor for me in choosing a mechanical valve was when the surgeon told me that at my age I would need an additional 2 or 3 surgeries if I chose a tissue valve.

I am extremely grateful for his advice. No one is guaranteed to never have another surgery with a mechanical valve; however it's pretty unlikely, whereas with a tissue valve it's a given and only a matter of time before it will need to be replaced.

Most choose tissue to avoid ACT. That has been very easy for me and not the least bit problematic.

 

[Jkm7]

I just want to mention a few things related to what has been written above.

I had two OHS in four years and my second OHS which was the valve replacement was considerably easier on me than the first. I had the same surgeon, same Mass General Hosptial, same Physicians Assistant and even some of the same nurses.

I have bovine tissue and am so happy I made that choice. It was definitely the right choice for me. I am older than you but did not wish ACT for the rest of my life and was worried about waking to hear a loud ticking valve. I can't stand a ticking clock so really did not want a mechanical valve that might be loud.

As to stairs, Mass General did not let me leave after either surgery until I walked a full flight of stairs. I have stairs at home and both times handled them just fine. You need to be conciously aware to not use the handrail to pull yourself up the stairs. That is very bad for your healing sternum. I was very aware to lightly hold the rail just for added balance.

The decisions we have to make are never easy and only those of us who have been in that position fully understand.
You have every reason to think you'll do absolutely fine and I wish you the very best while you go through these steps of preparing for this surgery.

Always keep in mind, the success rate is huge. Almost all of us do amazingly well.

 

[enkaynj]

Tim,
I am 50, going in for AVR in less than 48 hrs. I was leaning towards tissue from the very beginning due to its noise profile (or lack thereof),no coumadin needed and no change in diet or lifestyle. I was thrilled when my surgeon recommended a Bovine Valve as well (in spite of the fact that my cardiologist brother in law recommending mechanical). He foresees percutaneous re-valving techniques becoming commonplace in the next decade (hopefully right around the time I need my re-valving) that will not need another OHS. I am very hopeful as he is also involved in clinical trials in the US of percutaneous procedures. Let me know what you decide and stay in touch on this forum. All the best in making the choice that is right for you. Will let you know how it goes when I recover.