Some general questions about upcoming surgery

[paulst]

Hi all,

I am new to this forum but have been reading for the past couple of days and find it very informative. I guess I am just looking for some general feedback about what I am about to undergo. Symptoms in July led me to a physical then ultrasound etc. etc. and I now find myself scheduled for surgery on Jan. 12, 2011. A lot of new terms but I am quickly becoming accustomed to them. It seems I have a bicuspid aortic valve and am now in store for atrial replacement, mitral repair or replacement (tbd) and aortic root repair/replacement. Not sure really what the last one entails but something has to be done. 3 for the price of one I guess.

At 55 and in reasonably good shape I indicated that I thought mechanical was the way to go - I haven't changed that but ... lots to think about now that I have found this forum. My surgeon in Ottawa certainly seemed to support and, I thought, agree with that decision.

I guess my first questions relate to what seems like a long list of things for them to do while in there. Are there complications expected during surgery for the multiple procedures? Are the individual procedures themselves complicated by the need to do the others and/or compatibility with the others? Is the recovery complicated by this? Would the recovery be extended or once the chest gets opened is it more or less the same?

Thanks for any input.

Regards,

Paul

 

[Greg a]

HI Paul and WELCOME TO OUR FAMILY ....we are all brothers and sisters in OHS (open heart surgery) here is a list of terms you will encounter http://www.valvereplacement.org/forums/showthread.php?27412-Acronyms is your procedure at the Ottawa Heart Institute ?

 

[Lynlw]

Hi all,

I am new to this forum but have been reading for the past couple of days and find it very informative. I guess I am just looking for some general feedback about what I am about to undergo. Symptoms in July led me to a physical then ultrasound etc. etc. and I now find myself scheduled for surgery on Jan. 12, 2011. A lot of new terms but I am quickly becoming accustomed to them. It seems I have a bicuspid aortic valve and am now in store for atrial replacement, mitral repair or replacement (tbd) and aortic root repair/replacement. Not sure really what the last one entails but something has to be done. 3 for the price of one I guess.

At 55 and in reasonably good shape I indicated that I thought mechanical was the way to go - I haven't changed that but ... lots to think about now that I have found this forum. My surgeon in Ottawa certainly seemed to support and, I thought, agree with that decision.

I guess my first questions relate to what seems like a long list of things for them to do while in there. Are there complications expected during surgery for the multiple procedures? Are the individual procedures themselves complicated by the need to do the others and/or compatibility with the others? Is the recovery complicated by this? Would the recovery be extended or once the chest gets opened is it more or less the same?

Thanks for any input.

Regards,

Paul

I think for this part "bicuspid aortic valve and am now in store for atrial replacement, mitral repair or replacement (tbd) and aortic root repair/replacement. Not sure really what the last one entails but something has to be done."
The artial replacement probably means an Aortic valve replacement, the root is the part of the Aorta that is right next to the Aortic valve and it is pretty common to have that replaced with the Aortic valve they usually say something like they are having the aortic valve and graft done. and it shouldn't add much time As for the Mitral valve, they might see how that looks after they replace the Aortic valve ..IF that also needs replaced, it adds work for the surgeon and some time for the surgery, but it shouldn't make the recovery period any longer or harder if that is what you are asking.

 

[drivetopless]

Good luck with your surgery. I'm going under the knife on Jan 13th. We can compare recoveries!

 

[paulst]

Hi - yes, the Ottawa Heart Institute. Thx.

 

[Greg a]

you are in good hands there ...I have sent you some links in PM ....re "beating heart surgery" and Ontario options

 

[clydesdale]

Hey Paul

your story sounds similiar to mine. I went in for a routine physical they heard a heart mumur sent me for a ultrasound and a month later I was under the knife to replace my Bi Cuspic Aortic Valve w a mechanical one. I am 35 am in good shape and didnt really have any syptoms. I was also flip flopping between bio valve vs mechanical but my surgeon made a lot of sense to me about the mech valve the biggest being i dont want to be under the knofe again in a decade or so to replace the tissue valve. I was worried about the warafin and the ticking and all that stuff as well. I am now 1 moth post surgersy and starting to do a lot of moving around walking ext. so good luck with your decision I had my surgery in Toronto at St Mikes by Dr Verma.

As far as what to expect what helped me, and its not for everyone was to find pictures of what it would look like after sugery. the biggest thing is knowing that you will be hooked up tp alot of stuff and have a breating tube down your throat. it helped my pre surgery to visualize all this so when i woke up after i would not be panicked but know that i had succesfully made it out of surgery. i also went as far to watch some heart surgeries on the internet to educate myself. Some people thought i was crazy but i believe fear of the unknown is also worst then the fear of the known.

I know you are having diff procedures but i hope this helps and good luck.

 

[bigsidster]

I agree with Clydesdale.I watched every video i could find on the internet that showed open heart surgery.I watched sternum cutting and chest opening so much i think i could do one myself.Doing bypasses would be more difficult because i have BIG fingers and those knots are so small.Good luck Paul.

 

[Greg a]

You are on the VR calendar so all can send positive vibes to Ottawa

 

[ottagal]

Hi all,

I am new to this forum but have been reading for the past couple of days and find it very informative. I guess I am just looking for some general feedback about what I am about to undergo. Symptoms in July led me to a physical then ultrasound etc. etc. and I now find myself scheduled for surgery on Jan. 12, 2011. A lot of new terms but I am quickly becoming accustomed to them. It seems I have a bicuspid aortic valve and am now in store for atrial replacement, mitral repair or replacement (tbd) and aortic root repair/replacement. Not sure really what the last one entails but something has to be done. 3 for the price of one I guess.

At 55 and in reasonably good shape I indicated that I thought mechanical was the way to go - I haven't changed that but ... lots to think about now that I have found this forum. My surgeon in Ottawa certainly seemed to support and, I thought, agree with that decision.

I guess my first questions relate to what seems like a long list of things for them to do while in there. Are there complications expected during surgery for the multiple procedures? Are the individual procedures themselves complicated by the need to do the others and/or compatibility with the others? Is the recovery complicated by this? Would the recovery be extended or once the chest gets opened is it more or less the same?

Thanks for any input.

Regards,

Paul

Hi Paul,

Just wanted to add a warm welcome to this great supportive forum. I had aortic valve replacement surgery at the Ottawa Heart Institute and received wonderful care. As you are probably aware, this facility has an excellent reputation. There are a number of members who have had more than one valve repaired/and or replaced. Hopefully, they will be able to chime in and provide you with some feedback.

If you have any questions about the OHI, do not hesitate to PM me.

All the very best! You will be in good hands.
P.S. Who is your surgeon?

 

[ALCapshaw2]

Welcome Aboard Paul,

First off, Recovery pretty much depends on what type of Opening you will receive (full sternotomy, mini-sternotomy, Thoracotomy, etc.) and not what they do once they get in there.

As a BAVer, you might want to browse through the Bicuspic Aortic Valve and Connective Tissue Disorder Forum. Be sure to ask any and all surgeons you interview about their experience doing AVR and Surgery of the Aorta on congenital BAV patients. Note that Surgery of the Aorta adds another dimension to the mix. You may also want to look over the Valve Selection Forum where you will learn that there are second level choices to be made once you have decided between Tissue and Mechanical since there are Several Different offerings in both categories.

That should keep you busy for a while!

Feel free to ask any Questions that come to mind as your learning progresses.

'AL Capshaw'

 

[paulst]

Hi all - just a general note of appreciation here for all the responses received. Thanks for taking the time.

Paul

 

[allygarve]

hi every one, i am 63 quite healthy and active. and awaiting an aortic valve replaement, (very scary) i would appreciate some feed back regarding the two valves, i dont like the thought of taking warfarin for the rest of my life,as there are things you shoudn't eat,ie,greens and fruit, and i eat loads of this,also i am not keen on the clicking sound they say you will get, and other side effects of warfarin, but i also don't like the thought of going through this op again, my thoughts were if i had the tissue valve, maybe in 12 to 15 years the would have perfected it being done with less invasive treatment, can people who have had these valves done please give me there thoughts thankyou thankyou,,pamela, any one elses thoughts also would be appreciated

 

[Lynlw]

hi every one, i am 63 quite healthy and active. and awaiting an aortic valve replaement, (very scary) i would appreciate some feed back regarding the two valves, i dont like the thought of taking warfarin for the rest of my life,as there are things you shoudn't eat,ie,greens and fruit, and i eat loads of this,also i am not keen on the clicking sound they say you will get, and other side effects of warfarin, but i also don't like the thought of going through this op again, my thoughts were if i had the tissue valve, maybe in 12 to 15 years the would have perfected it being done with less invasive treatment, can people who have had these valves done please give me there thoughts thankyou thankyou,,pamela, any one elses thoughts also would be appreciated

Hi, for the most part there are 2 catagories of valves Mechanical and tissue, but each catagory has quite a few different brands /types of valves. There is quite a bit of debate on which valve is the best choice or mechnaical or tissue ect there are quite a few discusions at http://www.valvereplacement.org/forums/forumdisplay.php?16-Valve-Selection

There are a few misconceptions, IF you choose a mechanical valve you still can /should eat vegatables and fruits, just be kind of consistant.. Also for someone in their 60s for the most part the studies for tissue valves the vast majority of 60 year olds should have the more popular (right now) tissue valves (such as the edwards bovine perimount, or st jude Biocore or even the Hanncock II) last closer to 20 years than 12. Also you might want to ask your surgeons their thoughts on IF you choose a tissue valve now if /when that needs replaced, what do they think the chances are you would be able to have it replaced in the cath lab (percutaneously) and not need open heart surgery to replace it. They already have trials where they are replacing tissue valves with new tissue valves by cath and they are going well.

 

[Jkm7]

hi every one, i am 63 quite healthy and active. and awaiting an aortic valve replaement, (very scary) i would appreciate some feed back regarding the two valves, i dont like the thought of taking warfarin for the rest of my life,as there are things you shoudn't eat,ie,greens and fruit, and i eat loads of this,also i am not keen on the clicking sound they say you will get, and other side effects of warfarin, but i also don't like the thought of going through this op again, my thoughts were if i had the tissue valve, maybe in 12 to 15 years the would have perfected it being done with less invasive treatment, can people who have had these valves done please give me there thoughts thankyou thankyou,,pamela, any one elses thoughts also would be appreciated

Hi Pamela and Welcome.

I am some younger than you and opted for tissue valve at my second OHS. Your reasons for wanting tissue are about the same for all of us. In my case, I am especially happy I opted to not have mechanical valve as there was no way for me to know in advance what a huge dose of coumadin I would have been required to take the rest of my life.

My surgeon (and many others but not all), order a short course of coumadin (usually three months) post op for tissue valve patients until your own tissue grows over smoothing the seating of the valve to reduce risk of clots. While I took that short course, I kept being prescribed higher and higher doses and I never reached my therapeutic range of 2.0 to 3.0 despite being on more than 90 mg per week. That is a very, very large dose and when my surgeon heard how much I was taking, he had me stop at 2 1/2 months. Yes, we all know the correct dose of everyone is that which keeps us in our desired range but I was very uncomfortable swallowing that much every day. I would have had to do that for life had I gone mechanical.

None of us have guarantees that even with tissue we won't have to be on coumadin if we develop a-fib but I'll face that if it happens.

Please feel free to ask any questions you might have. Though our doctors are each individual's best source of info, those of us who have been through it can help with so many of those 'nuts and bolts' and practical sort of questions we all have when facing this surgery.

Best wishes.

 

[Mentu]

Paul, welcome to VR. I was a little older than you last year at 59 and found that recovery actually went quite smoothly during the early months. My experience and those of the people with whom I went to Cardiac Rehab was that if you are careful to manage your recovery and restrain yourself from going to fast to early then you are likely to be back to a pretty normal schedule in a couple of months. The most critical periods seem to be the first month when the basic healing of the wounds takes place and after that being careful to allow the sternum to heal. At my Cardiac Rehab center, the physiologist frowned on any upper body exercise before 12 weeks. By then, however, I was already exercising quite vigorously. So take your time and make a recovery plan and follow it. Most of us have felt that we really could do a lot more but this is one case where slow and steady works better. Healing once is better than over stretching and hurting yourself.

As for what to expect, when I got home, I found that I could take care of myself without any problem but those first weeks are pretty much sleep, walking, eating, small chores, more sleeping. I found I could walk about a mile by the end of the third week and more soon afterwords. Walking several times a day really lets you feel the progress. At first after walking, you need a nap but as the days go by you find that instead of a nap you just need to sit for awhile. By Six weeks when I began Cardiac Rehab, I no longer needed that rest after walking or exercise.

I think it is wise to know the details of what your surgeon is going to do during the OHS and to be an active participant in the decisions that need to be made. Like the Clydesdale, I found that I understood what was to happen a lot better after watching a valve replacement surgery. If nothing else, you get a feel for how skilled these surgeons are and confidence in one's surgeon is important. Here is a link to the video that I found most helpful:


http://video.google.com/videoplay?docid=-6218906821548692571#

Feel free to send us more questions as they arise.

Larry

 

[allygarve]

glad your surgery went well,and i hope your full recovery goes well, i am also going under the knife in a few weeks, and have to decide which valve to have, can you tell me please what the ticking is like, and roughly how loud is it, that is my main concern thankyou

 

[ALCapshaw2]

glad your surgery went well,and i hope your full recovery goes well, i am also going under the knife in a few weeks, and have to decide which valve to have, can you tell me please what the ticking is like, and roughly how loud is it, that is my main concern thankyou

There have been several threads on mechanical valve noise, mostly in the Valve Selection Forum.

Most people report that they don't hear their valve most of the time.
Some report that they can hear it in quiet rooms, especially if there are hard walls,
such as tile walls in bathrooms.

The sound is more of a soft thump (and NOT a hard click) that many find "reassuring".
Taking a deep breath and holding it can enhance the sound for those who wish to hear their valve.

Acoustical noise from mechanical valves seems to be highly dependent on Body Acoustics and how hard the heart beats. Hearts that have been damaged by pumping against a stenotic natural valve for too long will often continue to "pump hard" until the heart muscles 'recondition' to the new valve. This is another reason that having surgery "sooner" is better.

Body position (laying on left vs right side in bed) can also have an effect.

'AL Capshaw'

 

[normofthenorth]

At 65, I'm still in the hospital 4 days after my OHS. My diagnosis and prognosis were very similar to yours, Paul, except that I'm 10 years older, and that definitely makes a difference.

I went with tissue AVR. I'd been born BAV, too. Surgeon told me he'd probably do the "Benthall" = also replace the Aortic Root, but when he examined it, he decided it would be fine with a little "tuck" or "dart" to make it a smidge smaller. I didn't get the size of the valve or anything, but he said my AR was always <5cm, and after the "alteration" it was "normal". He also decided to add a Dacron reinforcement to my MV, which had been overstressed by the stenosis of the bad AV, and the heart's compensation for it (like a strengthened Left Ventricle).

The choice of a valve is one of the most personal choices a person ever has to make, right up there with getting engaged! And if you're an info junkie like me, you want to read a bunch first. On The Other Hand, you're going to be unconscious when the surgical team finally gets the best info on the state of your heart -- from direct observation of the Aorta after they remove the faulty Aortic Valve (I often call it Atrial, too!), and from an immediately pre-incision Trans-Esophageal Echo-Cardiogram ("TEE") down your throat after you're knocked out.

There's a limit to how much you can, or want to, "tie your surgeon's hands" under that circumstance. For their part, they are almost certain to install the Aortic Valve of your choice, though things can always change at the last moment.

There's a study called "Hancock II Bioprosthesis for Aortic Valve Replacement: The Gold Standard of Bioprosthetic Valves Durability?" at http://ats.ctsnetjournals.org/cgi/content/abstract/90/3/775 that shows excellent durability from the "pig" Aortic valve I just got -- and in the same place I got it! I got the whole study by fax from my surgeon, though it will probably cost you some money unless you have connections. At 55, you still seem to have a better chance of hitting 80 with a sound mechanical valve than a sound Hancock II, but those odds don't look vanishingly long, either.

And there are unfortunately NO guarantees with any choice you may make: Some Mech. valves need a re-do, some tissue-valve patients need to take Coumadin forever (usually for other reasons), etc. So it helps to become REALLY comfy with your choice -- and that's a good trick, when there's no obviously "perfect" choice!!

Another general choice is between the newest high-tech valve (of any kind), which may promise breakthrough performance, or one that's been in use for much more than 20 years, and has demonstrated impressive reliability in that time range.

For my lifestyle, at 65, the Hancock II seemed a good choice -- despite the fact that its hemodynamics may well be maybe 13% worse than the CEP cow valves, and I'm a "jock" who'd love to get back on the volleyball court with the 30-somethings, if I can!

Pamela, if your choice were mine, I'd go the way I went, given the stats at your age. Obviously, it's not my choice, it's yours. My attitude is "Look, if I can countenance the thought of having to do this again, while I'm still in my hospital bed, intermittently clutching a pillow when I cough (and it STILL hurts a lot) then how bad can it be?" And if I made tradeoffs in order to try to ensure that I never had to do this again, and then something came up (I won't list the possibilities) that meant I DID had to do this again, I might feel even more miserable than I would otherwise. Again that's me, but you two have to get in touch with you, then make a choice you can marry -- for richer and for poorer, etc., etc.

Allygarve, in addition to that study looking pretty good for you at 63, there is definitely good reason to expect that any "re-do" that any of us need will be able to be done by catheter rather than OHS. (As always, there are no guarantees.)

One last thought: In my first 4 days with a new tissue valve, and a repaired MV that now does NOT leak, I am SHOCKED by how loud my heartbeat is, a lot of the time! My rhythm and such have been normal except for maybe 2 hours of a-fib on"Day 0" and a couple of hours of PVC today. But my heartbeat has often been elevated (90-105-ish -- I usually "live around 60!) and often "beating out my chest", either in my throat or in my gut. None of the experts here sees anything weird or problematic in my experience, just a "these things take time", "you've just been through the wringer" type thing. But here on day 4, if I had EXACTLY the SAME impression from a mechanical valve, I KNOW I'd be blaming the valve!

 

[Bryan B]

Hi Paul,

I just wanted to add my experience concerning the mitral valve. As my aortic valve got worse my mitral valve starting leaking too. My surgeon said that he would check it after replacing the aortic valve to see if it returned to normal or if there was a separate issue but he thought it was due to my bad aortic valve. Once he replaced my aortic valve the mitral valve returned to normal with only trace leakage (which is for all purposes normal). I don't know enough about your condition to say it will be the same with you, but I think it's fairly common for the mitral valve to start leaking somewhat as the aortic valve gets worse. This is just my non-medical experience from what I have learned from others here over time.

--------------------

Aortic root measured 5.4cm at top end of root on 11/9/10
Surgical Consult 11/19/10 pretty obvious he said I need surgery
Still waiting on a decision from SS disability so I can get financial help
Newest symptom periodic chest pain