Questions Galore!

[hinsocal]

Hi all,

I have several questions, but first I wanted to say that this site is terrific. It has helped ease any anxieties about the likelihood of surgery, which I suspect is sooner (as in a year or two) rather than later. Knowing what to expect is half the battle.

My story:

I?m a 55 year old male. The murmur was first detected when I was in my early 20s. I?ve been monitored every other year for most of those years in the various cities in which I have lived, including Chicago, New York and San Francisco (UCSF). Everybody has always told me I'll be in my 70s when this thing has to be replaced, if ever. Famous last words! (At least based on the many great stories from this forum.)

Mine is a bicuspid aortic valve, likely a deformity from birth. I?m in great shape. Exercise regularly on the Eliptical (40 minutes a stretch, 5-6 days a week.) Feel great. Low cholesterol. High blood pressure, but treated with multiple meds. Had a recent scare when my ankles started to swell; turns out it was likely the combo of Niaspan with a new blood pressure medicine. Doc wanted to do a stress echo to be sure. He had just returned from a meeting at the Mayo Clinic in Arizona, where the focus was on the need to start replacing valves on seemingly healthy, asymptomatic people. The idea, as I?ve read here, is to catch it before the heart is damaged. I?ve seen many of your comments on that. But there's early, and then there's early! This test was six months after the most recent echo. Prior tests have included an MRI of my heart; now that was a treat! (I?m being somewhat sarcastic.)


Bottom line (and because I know many of you like the numbers): No real changes. Left ventricular and diastolic dimensions essentially unchanged. Mild left ventricular hypertrophy septum 1.3cm, posterior wall 1.3cm. Very mild aortic stenosis. 2-3+ AI. In his report to my doc, the cardiologist discusses ?an eccentric aortic insufficiency jet, yet it appears to be moderate to severe.? He adds that I have no enlargement of the ascending aorta. Measurements unchanged since March 21, 2005. No evidence of coronary insufficiency. Exercised on the treadmill for 11.5 minutes at a heart rate of 155.

To those of you who follow this kind of stuff very closely ? and I know some of you have had some very serious situations and I know you?re not doctors ? what does this sound like in the scheme of things? Because I tend to be very curious and hands on (and thanks to this site, very informed) my doc suggest I see a surgeon when I can just to get a surgeon?s viewpoint. We both actually thought the Cleveland Clinic would be great, though there are quite a few good surgeons in southern California. (Have any of you done the CC's e-second opinion?) Not sure if the CC is right, quite yet. My bigger question: Have many of you heard of this desire, by Mayo and perhaps others, to get in while you?re still asymptomatic?

Question 2: What role does good aerobic exercise, muscle strength, etc ? pre-surgery --have in recovery from surgery? The obvious answer is that the better the shape you?re in, the faster and easier the recovery. But in this case, does it really matter?

Question 3: I?m fearful of blood thinners, daily home monitoring, eliminating certain foods, red wine, etc. My doc says he tells his patients to ignore the food lists and just watch your INR levels. Still?.the Ross Procedure or other natural replacements sound preferable for my lifestyle. Am I too old for those. I realize, in the end, a surgeon will answer those questions.

Question 4: How long before many of you returned to work? My job doesn?t involve anything physically demanding. And have many you noticed serious memory problems post-surgery?

Again, thank all for reading. And to thanks to this site for existing.

 

[Ross]

Hinsocal welcome.

Sounds like you'll be in the waiting room for a while. How long is anyones guess. Could be a year or two or even much longer. Surgery is in the offing though.

When it comes to heart surgery, it's like being hit by a truck. Everything you were before surgery has been turned into a weak mass of skin and bone. You can be star atlete and still have a difficult recovery. There just isn't anyway to predict how it turns out for any individual. Last thing you'll want to do is excercise. You'll have to eventually, but I'm here to tell you, this really knocks the wind out of your sails.

Coumadin--Far to much myth circulates around this drug. Eat what you like as often as you like and adjust dose to that diet. Drinking in moderation is ok unless you have bleeding stomach ulcers, then it's a no no. You might consider going to www.warfarinfo.com and getting a small education on Coumadin. It should make you feel much more at ease if you decide to go mechanical. Also, see our sticky thread about Coumadin in the anticoag forum.

Figure 6 weeks to return to work. Some have gone in 4, but I think they were nuts. Once all the fog from anesthesia wears off and it does take a long time, you won't have any real memory problems to worry about. But your going to feel drugged for a good long time after surgery.

Anything else, ask away and welcome again.

 

[hinsocal]

Ross, thanks, and once again, thanks for this tremendous site. I've been a long-time lurker and the more information, the better. I wish a pal who had a repair done by a famous surgeon at a famous hospital west of the Mississippi, via the robot, had known about this site. He would've been better prepared for the pain he endured. (If he had it to do over again, he says he probably would've gone open heart, for what it's worth. And he hated the surgeon, to boot. But I digress...) There's no doubt that I am headed for the OR. I'm just hoping to keep things stable for awhile longer.

I feel great. Do most people here already feel tired, or do they have other symptoms? This asymtomatic question, combined with the Mayo approach, is of great interest. There's aggressive, and there's too aggressive.

Again, thanks.

 

[Ross]

The human body is great at compensating. You degrade so slowly that you don't really realize how bad you are until your fixed. You may feel good now, but you may feel brand new when it's over. Some people don't, so I don't want to get you too excited, but most have a good recovery.

I've heard mixed stories on the robotics repairs. Most did say it was very painful. Honestly though, even though your sternum is sawed in half for full open heart, the pain isn't as bad as you would think. It's not a picnic, granted, but it's no where near what one imagines.

 

[bvdr]

Welcome hinsocal and welcome to this forum. It sounds like you have already been reading and becoming a well informed valve person.

I'm one who does believe that operating on an undamaged heart will most likely give you the best results in the end. Sometimes symptoms don't come, or more likely, aren't recognized as actually being symptoms, until damage has been done. So I think that if symptoms have appeared then get it done ASAP and that if heart damage is progressing then get it done as well. One rather scary aspect of bi-cuspid aortic valve disease is that sometimes the first symptom can be sudden death. Now if things are pretty well stable for you then getting that surgical consult is still a great plan. There is time to research his recommendations without feeling the pressure of having to make your surgery choices right then and if perhaps you don't like the guy then there is time to find another.

My heart issues are of a different sort than yours so I am not really comfortable saying anything about the Ross procedure. I do think though that going into surgery in as good of condition as possible is only common sense. You mention having hypertension.....NOT a good thing. I've had it since I was about 30 and have been properly medicated for it for almost 30 years. Still my docs are always referring to it as a damaging factor. The meds don't erase the hypertension but make it less of a stress to your cardiovascular system.

Regarding warfarin....Do an honest of assessment of your over-all health since future procedures and surgeries become more complicated. On a day to day basis it isn't too bad at all. Home testing is not every day but rather once a week or so. It is very doable.

 

[MikeHeim]

Question #1 - I was only somewhat symptomatic before my surgery. I suddenly had a lot of difficulty running, which was odd for me as I was a marathon runner. I could jog slowly (10min miles), swim, use an elliptical for what felt like forever and I never had an issue. Only had shortness of breath while running 8min miles or faster. I chose to go in because I was 28 years old and could not imagine wasting the rest of my late 20's and early 30's going downhill and having more and more symptoms. Especially since the decline was inevitable and I would eventually need the surgery anyway. I was of the mindset that I had a problem and wanted to get it fixed ASAP so I could get back to my normal lifestyle.

For question #4 - I went back to work at 10 weeks as a production supervisor. Others have taken longer, others have taken less. I was exhausted the first couple weeks back at work, and didn't realize just how tiring a supposed desk job could be. My advice would be to take as much time as you can. I could have been paid 100% for 12 weeks, so I felt no financial burden. If I stopped getting paid earlier, I would have found a way to go back to work earlier despite how I felt. For the second part, I know that my memory is much worse than it was before surgery. I used to be really good with names and seemed to remember everything. Now not so much.

Best wishes.

 

[Bina]

Hello and welcome!
I was also diagnosed with a murmur in my early 20s, then bouts of wild palps during my thirties. In my forties I started to tire easily and have some dizzy spells. Cardio wanted me to have OHS and I refused. A couple of years later I had no choice, I was almost incapacitated and very weak. My OHS went well, but I have the slowest recovery....I'm at 2 yrs and still making progress.
Don't wait until you have damage, get it done and over with.
Also: coumadin----NO problem. I home test every 2 weeks, it takes all of 5 minutes. Honest.

 

[Phyllis]

Welcome, it sounds like you are doing all your research and that's a "good thing". Dick was very active and athletic and didn't have any symptoms until he fainted on the tennis court(a very serious symptom! ). Don't fear a consultation with a surgeon (Cleveland or anywhere else you would consider going), it can only provide more enlightenment and help in your decision. Being in good physical shape going in is definitely a plus in your recovery. Best wishes to you and please keep us up to date.
Phyllis

 

[hensylee]

welcome to VR. I can't answer your questions, but I can be a supporter all the way. You already know the value of VR. Blessins......

 

[marie]

I feel great. Do most people here already feel tired, or do they have other symptoms? This asymtomatic question, combined with the Mayo approach, is of great interest. There's aggressive, and there's too aggressive.

Again, thanks.

I don't have symptoms except the feeling tired. Mine was caught several years ago in an echo and has been watched so mine is going to be sooner rather than later. I want to add that if I didn't know about the leaking valves I would attribute being tired to getting older. I am 66.

Welcome to VR

 

[hinsocal]

This is fabulous dialog. All of it is helpful and thought-provoking. Once again, thanks.

 

[kfay]

Hinsocal, Being a new member myself I'm not sure I can add much to any of your questions. However, I am a product of the Mayo Clinic's belief in doing surgery before too much damage is done. I'm a little different from alot of ya'll on here in that I have a congenital heart defect that I always knew surgery would be a possibility once there was one that was effective. Anyway, I went to my card in October for my 2 year check up. He said you need to start thinking about surgery, not immediately, but sooner rather than later. I asked what had changed. He said nothing, but the current thought was that it is better to do something now instead of waiting until damage was done. When I spoke to the surgeon at Mayo, first thing he said was "you don't need a new heart yet, but if you wait much longer you will." I about fell off of my chair. He said he would have preferred to operate on me years ago. So, I go from being fine 2 months ago to having surgery on Jan. 9 next year.

 

[WayneGM]

First of all, welcome to the VR site. Glad you joined us.

Now your questions.....

Question #1 - I was asymptomic when I had my OHS and I have absolutely no regret. Tests revealed that my heart chambers were enlarging yet I had no symptoms and my Cardio was surprised at how well I did during the physical stress tests.

Question 2: You anwered your own questions.....the better the shape you’re in, the faster and easier the recovery. IMHO, I think in any case this matters.

Question 3: I don't take blood thinners as I had a valve reapir so can't offer first hand experience. All I can say is that from the posted and other information I've read It sounds like moderation on the food lists and just watching your INR level is the way to go. It seems to me that consistency is the key, and then adjusting dosage to that. That said, I'm no expert.

Question 4: I have an office job and went back to work in 12 weeks as I had income insurance that covered that duration. Everyone is different and I've seen some go back as early as 4 weeks. IMHO take as much time as you need and can afford. In terms of memory loss, for the first year and a half I found I had some short-term memory loss, affectionally known as "pumphead". I don't seem to have it any more (I'm 20 months post-op).

Best wishes and good luck.

 

[tobagotwo]

If your pulmonary valve isn't bicuspid or having tissue problems, and doesn't have the issues your aortic does, you are still eligible for a Ross Procedure. However, you should go to someone who has worked with bicuspids, as there can be tissue changes that will make the Ross not last. These sometimes accompany a bicuspid valve.

If you get a tissue valve, you can likely avoid the use of Coumadin. There are a numbr eof good ones on the market. The one with the best pedigree of longevity at this time is the CE Perimount valve, made of cow pericardium. Thereare also excellent biological valves from Medtronics (the Mosaic, which I have, or the Freestyle) and one from St. Jude (the Epic, which may not be approved in the US at this time (it's unclear from the website). All have anticalcification treatments. The likelihood is high that you would reach the American male "mean time of demise" (76) with that valve, but would need one more valve to get you through your real lifetime (I am assuming into or beyond your nineties).

If you are adamant about not wanting another OHS, your choice is a mechanical valve, which at this time also entails Coumadin use. My favorite of those is the On-X, although I disapprove of their advertising methods. However, any of the top mechanical valves is a safe choice.

General physical fitness and muscle tone do help recovery time and pain levels, in my estimation. However, working out with aortic regurgitation (insufficiency) is extremely hard on your heart, and is not good for your heart as the AR/AI and AS worsen. I believe that you should lay off for a few weeks before the OHS, rather than straining it to the last. Don't try to do a last-minute build-up, as your biceps may prosper, but your heart will suffer - and it is all about your heart.

Best wishes,

 

[Lynlw]

Bob, The Epic will be in the US in early 08 http://biz.yahoo.com/bw/071126/20071126005033.html?.v=1

 

[Susan BAV]

Welcome to the site, "H." Glad you found it.

You may find further beneficial information at bicuspidfoundation.com and you also may find some of the aortic valve replacement experiences in the Stories section, here on VR.COM, informational also. You may find it interesting that there are a couple of VR.COM members near you who have recently used surgeons in SD county and there are some others near you who have trotted up to LA. Take care and post again.

 

[dick0236]

I very much agree that surgery before symptons will help assure good long term results. I was told of my "heart murmur" in the late 1950's although surgery back then was not an option. Ten years later, I was advised to have the surgery even though I was still asymptomatic. Having the surgery then was probably one of my smarter life decisions.

I was a young man (31) and don't recall any difficulty healing after the surgery. I was fresh out of college and passed the pre-employment physical with a Fortune 500 company six weeks after being discharged from the hospital. Recovery, if you are otherwise healthy, should be no problem.

For forty (40) years I never thought taking warfarin was a big deal. Only after seeing some of these posts since I joined the Forum have I realized that some people really don't like the stuff. Do I like taking warfarin ? No, but then I don't like taking medicine....period. It is just a necessary evil. I take the pill, test regularly, eat what I want and do what I like. However, like many drugs, it is potent but it does not need a "skull and crossbones" printed on its label.

 

[Philip B]

Questions

Questions

You have probably noted differences in individual experiences and perspectives. For what it is worth, here are my thoughts.

Question #1- While it was undoubtedly time for me to have my defective aortic replaced, I had no symptoms. A bigger issue related to my bad valve was the aortic anneurysm that had developed. In my opinion it's better to address valve issues before symptoms appear.

Question #2- Opinions will probably vary on this issue, but I subscribe to the view that your chances for an easier recovery are better if you are in decent shape. I do not believe one needs to be an exercise junkie to stay in reasonable shape.

Question #3- I opted for an artificial valve rather than tissue and doing the coumadin therapy thing has been no problem. I do home monitoring once a week

Question #4- When one returns to work after AVR surgery varies by individual. Despite AVR surgery with an aortic graft, I only took six days off work. I returned to working 1/2 days one week after my surgery. Based upon the exeriences of other fourm members, my experience is probably an exception. One thread of advice is pretty consistent- listen to your body and do not overdo after surgery.

-Philip

 

[Debbie]

welcome

welcome

Welcome, another So. Cal. member, yea! Hi I'm Debbie and I live by Temecula. There are many great Doc.s and hospitals right here in So. Cal. Scripps in SanDiego is on the top 50 list along with UCLA, and Cedar Sinai. I don't think USC, and Loma Linda are on the top 50 but still great. I'm hoping to have my surgery in the next 3 months and I'm working on getting Dr. Starnes with USC to do it. I need my pulmonary valve replaced. Hey I'm going to be planning a get together with all So. Cal members after the holidays and before my surgery, would you like to join us?? Let me know and I will put you on the list. Were thinking a Sunday afternoon at one of our great winery's in Temecula. Keep reading you'll get more info. then you ever dreamed possible here! Take care and don't worry. Debbie

 

[briansmom]

Please get fixed before you are symptomatic. IMHO it makes the recovery much better.
Also, I can't say enough about the fine surgeons at Sharp Memorial Hospital in San Diego. The staff at the hospital is AMAZING. I have never been at a more caring and thorough hospital. My only caveat to that is that my son was a big "win" for them. He was so close to death when they got him that every single person in that hospital knew who he was and treated him and us wonderfully. If you want specific doctor recommendations, PM me.