Surgery's scheduled, still making choices, looking for feedback

[KMS]

Well, it's my first posting and I can't tell you how much I've enjoying reading through this site. As I prepare for my surgery in just two short weeks (Northwestern in Chicago, Surgeon Thomas Gleason), I've found such comfort and empowerment in your testimonials. I'll give you a bit of my history before I ask a few questions.

I'm a 43-year-old female who worked as a busy, Type A executive for a major company until early this year. While I loved my job tremendously, I flew over 150K airmiles a year and this past fall found myself wondering if the stress was worth it. I decided it wasn't. I wound things up in February and settled in to a nice long hiatus before looking for something based here in Chicago. Then my husband (thank god) suggested that I go in for a physical.

At my physical on March 28th, my physician told me that I had a murmur she hadn't heard at my last exam in 2002. She had me see a cardiologist (that day) who diagnosed mod-severe A.I. with a probable congenital bicuspid aortic valve. I then got a recommendation for an excellent cardiologist (David Mehlman at Northwestern) who ordered several tests. An MRI, a couple of echo's and a lot of anxious waiting later, I was told that my aorta was dilated to 4.9 and that I had an aortic aneurysm. After much dialogue with many medical professionals I now find myself, a month after the initial diagnosis, staring at OHS in two weeks. I'm resolved to it -- I want to have this corrected and move on with my life -- but I still have some questions.

My surgery will include reconstruction of my ascending aorta and replacement of my BAV. While I've heard a great deal about mechanical options (from this site and others), I'm looking for feedback regarding tissue valves. If you've got one (and especially if you've had the double pleasure of root and valve replacement), I'd love to hear from you. Also, if you've got a recommendation for a specific tissue valve, I'd appreciate that.

Thanks in advance for your words of wisdom...and keep your positive thoughts headed toward the Windy City on May 12,

Kristine

 

[Kate]

Welcome Kristine!
I was forced to make the same decisions as you last September when I had my aortic valve and a portion of my aorta (ascending rather than root) replaced due to an aneurysm at age 38. Although there is no right or wrong choice for people our age, I chose to go with a biological valve because it seemed a better fit with my lifestyle. However, as you can see from many of the people on this site, many are equally happy with a mechanical. In some ways, I think the choice is about the kind of stress you are more comfortable with - minor daily worries and disruptions caused by Coumadin or occasional major worries and disruption caused by surgery. If you decide to go biological, the Edwards pericardial bovine valve seems to be the one likely to last the longest. For someone your age, it has a better than average chance of lasting 15 years.

One other thing - because you have both a bicuspid valve and aneurysm, you may have an underlying connective tissue disorder (sometimes called Bicuspid Aortic Disease - Cedar Sinai Hospital has a good discription of it on the web). First degree relatives of a woman with this disorder have a 15% chance of having it as well, and some only have the aneurysm, which is difficult to catch without looking for it. So, I recommend you encourage your siblings, their children, your children and your parents get checked. Chances are they won't have it, but for the unlucky 15%, it can be a life saver. Hope this is helpful. Please feel free to ask if you have additional questions. Go Cubs! Kate

 

[centuryltd]

Hi Kristine,
Wishing you all the best for your upcoming surgery! I had my aortic valve replaced 4/12/06 with a St Jude mechanical valve. My surgeon felt that at 48 years old I should go with a mechanical one that will last a lifetime. Of course I will be on coumadin for that lifetime but at this point I'd rather deal with that than think about another valve replacement down the road.

Good luck,

Steve

 

[Phyllis]

Welcome Kristine. I will put you on the calendar for May 12th so we can all follow your progress and cheer you on. You've asked one of the hardest questions re: valve choice but if you spend some time on the threads regarding mechanical or biological, you will come to a decision as to what is right for you and our motto is that once you reach that decision, find peace with it and never look back. You might also want to check under the reference thread on what to take to the hospital and how to prepare the house for your recovery. We should keep you very busy reading for the next two weeks! Best wishes to you.

 

[KMS]

Thanks for your good words...

Thanks for your good words...

Everyone -- thanks for the good feedback. (Phyllis, I'll definitely take your advice and review how to prepare our home for my "re-entry".)

Kate, since our cases seem to be similar, I'm wondering where (and by whom) you had your procedure done and if you've been happy with the result. I'm new to using this site and not sure how to have a private conversation...

Kristine

 

[PJmomrunner]

Welcome Kristine. As you can see from my signature, we have quite a bit in common. I can't add much to this discussion except to say check out a famous Tobagotwo missive on valve choice at: http://valvereplacement.com/forums/showthread.php?t=14330

 

[carista]

Hi Kristine!

I know how you're feeling and what you're going through. I just had my aortic valve replaced with a bovine (tissue) valve and I also had my ascending aorta replaced with a dacron graft in December 2005. I'm 4 1/2 months post op and feeling great right now (I'm 27 by the way). For me the hardest choice was choosing the valve, but it was made a little easier for me because of the fact that I want to have children. I can't recommend a paticular type of valve since I've only had mine for 4 and a half months and I just went with the one my surgeon wanted to put in me. Definately go back and look at the tissue vs. mechanical debates and you'll learn a lot. I could never tell someone else which valve I thought they should get because of the fact that it's such a personal decision. I can only tell you my personal decisions. If I had already had all the children I wanted or if I didn't want children I would have probably gotten a mechanical just for the hope of not having to have another surgery in the future. But I do want to have children and so far I'm very happy with my choice. Good luck on your decision and upcoming surgery and feel free to PM me anytime if you have any questions.

Carista

 

[Karlynn]

Hi Kristine,
Just wanted to say welcome! I had my mitral VR done at Northwestern over 14 years ago. I too live in the Chicago area.

 

[Phyllis]

Everyone -- thanks for the good feedback. (Phyllis, I'll definitely take your advice and review how to prepare our home for my "re-entry".)

Kate, since our cases seem to be similar (and we're both Cubs fans), I'm wondering where (and by whom) you had your procedure done and if you've been happy with the result. I'm new to using this site and not sure how to have a private conversation...

Kristine

Kate,
To send a private message, click on the member's name in the members list or in the thread and then click on "send a private message".

 

[Sir Reel]

Kristine,

My history is very similar to yours. I went from no symptoms while leading an active life to discovery of murmur at a routine physical exam (first in more than a decade) to cardiologist the next day saying I had major aortic valve insufficiency and a substantial aneurysm to replacement of the valve and the root (with dacron) 5 weeks later. Mine was discovered at 47.

I have a porcine valve. It is the Edwards Lifesciences Stentless Aortic Porcine Valve, Model 2500P. When I saw my surgeon a year ago, he said their experience so far with the valve is that it is still working in 98% of the patients after 12 years.

I am glad I went with the tissue valve as I can't imagine having to deal with Coumadin every day and I have an active lifestyle. I expect the surgery will be much easier by the time I need a replacement due to improvements in methodology or maybe they will discover how to extend the life of the valves.

People here who chose mechanical seem happy with their choices also, and you don't see posts of people wishing they made a different choice. Thus, you likely will be happy with whatever you choose.

The surgery and recovery are lousy, but in 6 months or a bit more you will be pretty much back to normal. Make sure to do plenty of rehab (but don't overdo it) - aerobic and stretching of the chest muscles.

One suggestion - take the pain medications as your doctor prescribes. I tried stretching mine out hoping to wean myself off as soon as possible (you hear stories of people getting hooked on pain meds) but the pain is pretty intense if you don't have enough meds in you and it takes a bit of time for the next dose to set in.

The good news is that while this is a major surgery, it is fairly common and you will return pretty much to normal. My only restrictions - don't lift more than 75 lbs and don't do things that jack up your blood pressure. No one could tell I had the surgery three months later.

Good luck.

 

[Guest]

Welcome, Kristine ... from another Chicagolander and Cubs fan !

While all of my surgeries have been at Chicago's Childrens Memorial Hospital, my current cardiologist (Mendelson) is at Northwestern. In fact, my next checkup is scheduled for May 18 ... you may or may not still be in the hospital at that time.

Good luck! Thoughts/prayers are coming your way.



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
CD Showcase.8p-11p central.04/28/06, www.wrmn1410.com
"Can you believe what a year it's been?" ... Savage Garden ... 'I Don't Know You Anymore'

 

[Marguerite53]

Hi. Just wanted to welcome you! My surgery was April 18th and one of the medical degrees my surgeon got was from Northwestern.

Sounds like you're in the right place. You'll learn alot here!

Good luck.

Marguerite

 

[eddiec]

Hi Kris- welcome to the site and good luck with your surgery. Had my bicupid aortic valve and mitral valve replaced on March 27, 2006. I chose the St. Jude mechcanical valve because of my age (66) and was told that if I chose the tissue valve I might need another surgical procedure in 10 years or more.
It is a tough decision but think it through and I am sure you will make the right choice.

 

[greg]

Kms

Kms

I had my aortic valve replaced in Nov 2003. I chose the St Judes at the Docs suggestion and the thought of haveing the operation again.
I've had no problems adapting to the coumadin, but the potential for bleeding is real.
You can hear the mech valve click. My granddaughter hears it, my wife hears it and I hear it. Usually I can ignore it just fine but sometimes in the middle of the night I have to move the pillow to the very top of my head because it seems to thunder thru me if my ear (especially left ear) is on the pillow. That is a small price to pay if I don't have to go thru it again though.

Hoping you the best of luck and speedy recovery.

greg

 

[Andyrdj]

Question to all

Question to all

With the fact that your ascending aorta is being re-constructed, does this make re-operation for reasons other than the valve likely?

Is it possible that part of the aortic root will be replaced? Do replacement roots calcify or wear out like tissue valves?

If so, then perhaps the "mech to spare re-operation" option is called into question.

But not necessarily - if both were tissue the two might fail at different times.

It might be that if another operation was needed, the extra effort and risk to do another valve replacement is minimal. Or it might not be!

On the other hand, if re-operation is likely, with a mech valve there's the issue of bridging therapy.

Some in depth information on this would interest me greatly.

 

[Tom F.]

Hi - I am another Chicago area resident. In December of 2002 I had my ascending aortic aneurysm replaced with dacron, but the docs were able to save my aortic valve, in what is known as a valve sparing procedure. I had my surgery at Rush University. Good luck to you. I am certain you will be fine!

 

[tobagotwo]

Your choice should be your own, regarding valve type, tissue or carbon (mechanical). There are many personal traits that are part of the equation. Your ascending aortic aneurism puts you on my personal "do not encourage" list for the Ross Procedure, so it's a somewhat simpler field of opportunities. I understand that right now you are asking specifically for information about tissue valves, as data to go into your decision-making, and which ones might be most desirable from that genre. Here are some of my thoughts...

There are two major players in the U.S. tissue market right now, Edwards Scientific (bovine pericardial - "CEP" and "CEPM") and Medtronic (natural porcine - Mosaic©, Hancock©, and Freestyle©). Both have anti-calcification treatments, and both use low-pressure fixation processes.

The Carpentier-Edwards Perimount© and Perimount Magna© are excellent, long-lasting valves. However, as they are manufactured valves (made of cow pericardium stitched together) Edwards doesn't package them with a root replacement or dacron/velour ascending aorta repair tube. Some surgeons do fabricate these portions with the CEP during the operation.

Edwards does have a Prima Plus© porcine model, with some of the current processes used on it, but there is very little information associated with it on the website, including any information on longevity.

The Medtronic Mosaic© is a valve-only product. However, the Medtronic Freestyle© is a root-inclusive stentless model that is so highly thought of that it's frequently used even without the root as a stentless valve replacement. In my opinion, it's the best tissue choice for root-inclusive replacement in the current market, and is the one I would choose, were it for my heart.
http://www.medtronic.com/cardsurgery/products/free_index.html

By the way, with your aneurism at 4.9, please try to make your decision very soon. You're approaching a dangerous crossroad with that.

Best wishes,

 

[carista]

With the fact that your ascending aorta is being re-constructed, does this make re-operation for reasons other than the valve likely?

Is it possible that part of the aortic root will be replaced? Do replacement roots calcify or wear out like tissue valves?

I just had an appointment with my cardiologist and I asked him if I will ever need the dacron graft replaced again which he told me no. He did mention that there is a possibility that other parts of my aorta might form an aneurysm though...

Carista

 

[mtkayak]

I opted for the mechanical valve after my surgeon made the recommendation. I was thoroughly confused as my cardiologist recommended the tissue valve. I had less than 24 hours to make a decision, I didn't expect the surgeon would recommend it but he did. It's untimately a lifestyle decision. I didn't want to have multiple surgeries in my lifetime being 37. I would likely have to have 2 more operations if I lived 30 or more years. The surgeon also made a point of telling that the older I got the more riskier the procedure becomes and the more scar tissue they have to dig through.

The Coumadin seemed like a small price to pay for no more surgeries. I do have an active lifestyle and I will continue to do so. I do extreme kayaking along with other outdoor sports and run the risk of hitting rocks. But I will not run scared for fear that I might injure myself and bleed to death. I thought about how many times in my 37 year old life I had been cut or had internal bleeding. The answer was 2 times and they both were stopped by adding pressure to the wound. If pressure can be applied then you can stop the bleeding. The doctors visits can be a little inconvenient at time esp. in the beginning when your trying to get your levels right. But once a month after that isn't bad. Plus, they have Protime home kits where you can monitor your own INR after the doctors are comfortable with you doing that.

 

[Superbob]

Please refer to the Tobagotwo post a couple of posts back. He is our authority on tissue valves.

I only wish to add that I have the stentless Medtronic Freestyle, the combo valve/root to which he refers. I am about 15 months post-op and doing well with it so far (have a follow-up echo scheduled for next month). I lead an active life, which includes moderate exercise. This is just one testimonial and is based on months, not years of experience. Just wanted to mention. Maybe others will chime in.