Got a shocker today

[canon4me]

Doctor told me today I was in high danger of sudden death and my stenosis had advanced to severe. I was fully expecting him to tell me "I'll see you a year from now and we're likely looking at 2 to 3 years before surgery." Didn't get that news. I asked him if he was bsing me and he said very matter of factly, no. He said I was kind of a rarer case in that I am not showing severe symptoms. I have been running on a treadmill for about 2 months 5 days a week. I run for 30 minutes and do a 5 minute cool down. As long as the treadmill was flat I was fine. He said no more running and walking was just ok. I said how long before surgery then - 1 year? Absolutely not. He said everyday I was putting myself at risk for a sudden cardiac event. He said my aneurysm had gotten bigger by about 2 millimeters, which would put it at 4.7 cm then. He said I could either have a presurgery heart cath with him (he's done thousands) or have it done at one of my two choices - Mayo or Cleveland Clinic.

I am still just as surprised as he**. All of a sudden my projects are coming to a standstill and going to call Monday and interview a couple of surgeons at those facilities. I will have to have my bicuspid aortic valve replaced along with my aneurysm fixed and who knows what else. I don't know about my root. Anyway, I asked him what the mortality rate was for my surgery - 5% and he said no it is way lower than that. I asked him what my chances of dying during the heart cath was and he said practically zero.

Anyway, not the way I wanted to end my week. I honestly though I was two years away. Things can turn on a dime I guess. Expect to see me on here a lot asking questions. I hope you don't get too bored or impatient with me. Thanks!

 

[Guyswell]

canon4me,

I highly recommend the Cleveland Clinic. I've been there two times for my surgeries. You can have them review your medical records and give you a second opinion if you like. If you choose to have your surgery at the Cleveland Clinic, they will prefer to do all their own pre-surgical work including the heart catheterization. Let me know if you want more details about my experiences with them. No hospital in the U.S. does more aortic valve surgeries than the Cleveland Clinic and their survival rates are among the best.

 

[canon4me]

Thanks for your feedback. Evidently, for most it is a survivable surgery.

 

[Gail in Ca]

I highly recommend Stanford Hospital and Dr Craig Miller. I have been there for 3 surgeries, 2 caths, and a couple of weeks for bacterial endocarditis. They treated me right. But, being in the midwest, you probably will go for a closer hospital! Good Luck. Don't worry too much. My aneurysm was at 6 when discovered and I waited another 6 weeks for surgery.

 

[katm]

Sorry for your news but happy that they have a handle on this and you are moving forward quickly. I live in Michigan and am just 3weeks post surgery. I had my surgery at U of M. I was very pleased with the care that I received. I know that you are in shock and sounds like you are still trying to digest the info. I was so worried about the Heart cath and can say that it really is no big deal, its the laying still for 4 hours that was hardest for me. I dont sit still for very long usually. I learned after my surgery that if I had been in better physical shape much of what bothered me the most post surgery would been easier. YOu sound as if you are in good shape. I would say dont worry but you will and being in the waiting room for months (pre-surgery)is in my opinion torture mentally. So if your surgery gets scheduled soon thats not all that bad, better to just get it over with. Before you know it you will be home and healing. Like I said I am 3 weeks post op and really am feeling pretty good. Good luck to you!

 

[ski girl]

Canon I agree with Katm - it's kind of good news knowing that you'll soon be fixed and starting a 'new' life with a heart that works properly. Just imagine how good the running will be then! The especially good news is that your cardio caught the increase in danger to you before it became obvious in a more negative way . . . .

And as for the surgery being survivable?? You have less than a 1% chance of anything bad going wrong during the surgery, and a 100% chance of something going wrong if you don't have it. You will most definitely survive. And survive to kick a$$. Good luck from down under!!

 

[pellicle]

Anyway, not the way I wanted to end my week. I honestly though I was two years away. Things can turn on a dime I guess. Expect to see me on here a lot asking questions. I hope you don't get too bored or impatient with me. Thanks!

They can indeed turn on a dime.

As others have said it'll all work out well, and really sooner is better than more delays. Look forward to answering any questions if I can.

Wish you all the best

 

[Jkm7]

When my valve went bad, the worse it got the faster it got worse.

While this was a shock to you, which most of us fully understand, it's good your cardio is attentive to your condition is guiding you through getting it taken care of.

All Best wishes.

 

[dick0236]

Doctor told me today I was in high danger of sudden death........ !

My docs told me that my chance of "sudden death" was 25% with no warning....that got my attention even tho I had few, if any, symptons of a problem. Without surgery they told me that I had little chance of reaching age 40. Since I am now pushing 80 the surgery obviously worked. BTW, your 5% mortality figure was about what it was when I had the surgery....and it has come a long way since those days. Good luck to you.

 

[canon4me]

Thanks so much for your replies. I understand I have some challenges ahead of me but the best way to approach them in my estimation is to face them head on. My cardiologist thought he was almost certain they would use a tissue valve on me and I guess we shall see. He also said when I need to have the tissue valve replaced he thought they would be able to insert that one through a catheter right inside the other one.

 

[Pat J]

Your experience is very familiar. Went for my routine check up and was told I needed surgery or die as my bicuspid aortic valve needed replaced now, not later as I had expected. Feb 12 at Johns Hopkins. Best wishes to BOTH of us. My surgeon say 1% chance of death with surgery....certain without.

 

[epstns]

Hi, Canon,

I'm another midwesterner - Chicago to be exact. I had a BAV and severe stenosis (but no aneurysm), and had my surgery at Northwestern Memorial Hospital in Chicago. Another very good place, if your two other choices don't work out.

You didn't state your age, but I was 63 at time of surgery, and had known of my future need for surgery for over 9 years. Until about a month or so prior to surgery, I was going to the gym 5 days a week. I originally was a runner (7:30/mile) but slowed down to jogging and eventually speed-walking as surgery got closer. Had surgery, hit most of the speed bumps on the way through, and now almost 2 years later (age 65 now, yeesh!), I'm back in the gym 5 days a week and although I don't run as much as I did (knees won't take it), I do get a good workout on the ellipticals and the stationary bikes. It took a while to get back to where I am (adjustments to my pacemaker and my meds) but I feel better than most guys my age. You will, too - regardless of your age at surgery. You will feel better. The odds are far in your favor.

 

[canon4me]

Sorry forgot to add that I am A 57 years young male living in Iowa. Now that the cardio told me I need surgery soon, every little pain I have I think it's the Big one! I'm also a 9 year renal cell carcinoma (kidney cancer) survivor. Had a right partial nephrectomy in Mayo by the world's best urologist/surgeon, Dr. Michael Blute. I'm also a type II diabetic with it under control.

 

[socalhome]

You are close to Mayo? It's great. They have your records, history, easy commute. We consulted at the clinic, very happy with experience. They are top notch.

Sorry forgot to add that I am A 57 years young male living in Iowa. Now that the cardio told me I need surgery soon, every little pain I have I think it's the Big one! I'm also a 9 year renal cell carcinoma (kidney cancer) survivor. Had a right partial nephrectomy in Mayo by the world's best urologist/surgeon, Dr. Michael Blute. I'm also a type II diabetic with it under control.

 

[RobThatsMe]

Hi Cannon,

Your story sounds so familiar to mine. I too had severe aortic stenosis, pannus buildup around the valve, after 10 yrs with my original SJ mechanical valve.
Wasn't even aware of it, but when I went into my annual checkup, my doctor told me, and that he would guess that I had between 4 - 6 months to get it fixed. I was a-symptonatic. I was in good shape, ran 2 miles a day 5 days a week, felt good. But, it didn't look like I had many options regarding getting it fixed. So, I decided to seek out the best surgeons and hospital that I could find.
I alreeady had a severe ascending aortic dissection, and aneurysm, (This issue was the reason for my first emergency surgery).
I also knew, that due to my condition, and the fact that this was going to be a 2nd OHS, that it was going to be a more complex surgery.
Cleveland Clinic is rated number one for a reason. Think about this, they have performed so many heart surgeries that they have seen about anything that you could throw at them, and know how to react accordingly.

I selected the Cleveland Clinic, and had both Dr. Pettersson, and Dr. Rosselli both performing my surgery with their surgical teams.
Yes it was away from home, and my wife and I had to fly up there, but I wanted the best, and my friends could visit me later when I was mending. It sure beat the alternative of me never being able to see them again. A few close friends did come up to stay with my wife, and provide support, and that was greatly appreciated. Dr. Pettersson replaced the aortic root, replaced the valve, and built his on graft to help support the dissection. Dr. Rosselli concentrated, on the aneurysm, (had to bipass the coradid artery away from the aneurysm area, coil off the aneurysm, and further support of the dissection with his elephant trunk procedure, which included a sewn in stent attached to 20 cm of dacron tubing which hangs down into the decending aorta.

Do your research, send your records to the doctors at your narrowed down options, talk with them, and then select based on
your repsonses.

I did, and to this day, am so greatful for the decision I came to. Even my local doctors here in the Nashville area have told me that no one here locally could have done for me what they did there at the Cleveland Clinic.

Please don't hesitate to PM me if I can be of any help as you prepare for this.

Rob

 

[tgmorris]

My story, like many here, is somewhat similar in that I was shocked to find out that I was a likely candidate for suddenly dropping dead due to my acute aortic stenosis that had just been found a few months prior (I'd known I had a heart murmur since I was a teen). I was fairly asymptomatic but would get short of breath when doing any strenuous work. After I had my cardiac MRI I was also surprised to find out that I'd had a silent heart attack at some point in the past. This was thought to be due to a small piece of calcium breaking off the valve and lodging in the heart. Thinking back, this same scenario is a likely explanation for a couple of instances of loss of vision in one eye for a few minutes where the calcium deposit simply took a different route.

Fortunately for me, other than the BAV, my cath came back clean with no signs of coronary artery disease and I only needed the valve replaced. I opted for a tissue valve and wound up with a porcine. Other than overdoing it a bit when I first got out of the hospital things have gone smoothly. Since I have no other cardiac issues I was taken off all my meds 3 months after surgery. MY BP is normal and I do cardio workouts 5-6 days per week. As things progress my resting heart rate continues to drop and is now in the high 50's. If I push hard I easily reach mid 150's w/o feeling too overworked and my recovery time is very quick, dropping 20 BPM in a few seconds, so I'm pretty happy. I'm also doing a bit of light strength training as walking up 2 flights of stairs was a bit tiring for a few seconds immediately after.

I was lucky in that my GP sent me to a top rated cardio who, in turn, sent me to a top rated surgeon. So in many regards I'm quite fortunate the way things all worked out as the option wasn't very pretty and my wife was in tears when hearing the original diagnosis. My last checkups with each doctor were; GP - come back when you're sick, Cardio - see you in a year, Surgeon - see you in 15-20 years. All of them basically said that I have no restrictions so other than the multivitamin and 81mg aspirin that I take I'm a happy camper.

Basically, there really is a light at the end of the tunnel and, no, it's not a freight train headed right for you.

 

[carolinemc]

How soon is the surgery? Glad you have the diabetes under control and cancer survivor. Please let us know when the surgery is. Will be praying for you. Hugs for today.

 

[canon4me]

My records have been sent to both Mayo and Cleveland. I am waiting to hear back from them. One of the thoracic surgeons at Mayo called me and visited for about 10 minutes. Nice of him to do that. A nurse called me from Cleveland and was very patient and answered almost all of my questions. I am leaning slightly towards Cleveland because they have a lower mortality rate. The nurse told me that each one of the surgeons that does valve replacements, do about two valve replacements a day and they operate 5 or 6 days per week. So that put each surgeon at about 10 valve surgeries per week. You can't knock experience. It means taking a airline flight instead of driving, but so what if it gives you a better chance of waking up.

I just have to clear up the issue of heart cath. My interventional cardiologist in the midwest want to do the heart cath here in my hometown. If he encounters a blockage, he will probably do a stent. I think Cleveland would like to do a bypass themselves instead of a stent. So, that is something I need to clear up. I don't want to do anything that would complicate my valve replacement, aneurysm repair or future health.

 

[epstns]

My surgeon had no preference as to where I had my pre-op heart cath. He did, however, have specific instructions regarding any blockages noted during the cath. He told my cardio not to worry about stenting any blockages because he preferred to "fix them up while he is in there." I was found to have one artery blocked about 50%, so they did a single bypass when they did my valve surgery.

BTW - I'm not sure if I mentioned it, but if you are near Chicago you could also consider Northwestern Memorial Hospital here for your surgery. I had mine there, done by Dr. Patrick McCarthy - formerly one of the top guys at Cleveland Clinic, and one of the designers of the Edwards valve I have.