New guy... waiting in Washington

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
S

South Sound Sailor

I'm 50 years old and I found out 4 days ago that the heart murmur I've known about since I was 7 years old is now stepping up to take the center stage of my life.

I can remember going to see specialists in Houston 40-plus years ago; a final visit in 1964 in which my parents (and I) were told that I needed to just be careful when I was playing. I'm guessing like thousands of other people who have heard similar things, I never again considered that advice... until 4 days ago. Four days ago my cardiologist told me in clear and convincing language that it was time for me to stop running.

I've been a runner since I was 13 years old (and that's going way back before running was a fad or before marathons attracted 10s of thousands). As a young teen, I ran in Junior Olympics in the summertime, cross-country in the fall. Never quite fast enough to be a
star but always strong enough to finish in the middle of the pack and feeling like I still had plenty of juice left. I have 5 marathons, all fairly recent, on my list of running accomplishments along with countless 5 and 10Ks and a good number of half-marathons. I'm one of those crazy guys who relishes waking up in the morning at 4:30 am, strapping on a pair of running shoes, shorts and a long-sleeve tee, meeting 1 or 2 fellow crazy-runners and heading out into 30 degree temps for a 10 mile run.

I've run in the blasting heat and humidity of Southeast Texas, in the hills of Arkansas, in the flatland of northern Louisiana and in the dry desert heat of West Texas. For the past 4 years, the Pac Northwest has been my home. I live just one mile from the southernmost tip of the Puget Sound. The rain here never slowed me down... and I tell all my runners back in the heat and humidity of the south that I landed in runners' paradise.

But 2 years ago things started to change for me. Running uphill was no longer fun, no longer the easy thing for me. Running uphill was always where I made my move in races. I found I could pass people who were huffing and puffing and I would smile and throw out a "good run!" or "awesome weather!"... any goofy little comment to underscore that I was actually having fun running uphill. Two years ago, 8 miles into a 12 mile run, and going up what I've considered in the past to be an easy uphill grade, I experienced something I've never felt before... the urge to stop running, the feeling like I could not use my sheer will power to haul my body up the hill. I stopped running and walked and wondered... what the heck... is this what nearing 50 is all about?

Then in the following months, a heavy feeling in my heart started to set in every time I ran uphill. I'd mention this to doctors and I'd get zero reaction. Stage 1 hypertension brought me into a doctor's office 2 months ago. Here I was, a 20 to 30 to sometimes 40 mile a week runner for the past 37 years and I'm dealing with high blood pressure and the inability to run uphill. Plus I was having problems keeping my heart rate within 60 to 80% max range. It was zooming up to 80% and beyond on even the easiest of training runs. Doctor says lets check out this murmur just to be safe.

So the echocardiogram was done about 6 weeks ago... this is NOT what I thought male mid-life crisis was supposed to be about!!! Working my way back to where I started this short story... my cardiologist tells me 4 days ago... stop running. Period. Mild walking... maybe but even that can bring about sudden death syndrome, a real but possible concern.

I don't know all the technical stuff but I'm requesting reports. I know I have aortic valve stenosis but I don't know if it's a bicuspid valve or just a calcified tricuspid. I know the dizziness and fatigue are growing concerns and even though the cardiologist suggested that I consider AVR in 1 to 2 years, I'm thinking there's no way I can wait that long. So for the past few weeks, I've been pouring over this forum, trying to find information I can relate to and will help me make a decision. Valve types, doctor and hospital reputations, with a prosthetic will I click aftewards? Oink, moo or coumadin for life? Reops???

It's not that I'm overwhelmed or depressed... I'm in denial. I just want more than anything to be able to wake up in the morning and sneak out before sunrise, mp3 headset purring away in my ear, glancing up and down my street at all the neighbors' windows... thinking "why is everyone still asleep???... doesn't anyone know what they're missing out on???" At this time of the morning, the sky is still mostly dark. Just a hint of red in the eastern sky. I imagine rounding the corner of my street and looking across the lower Puget Sound and for the shadow of Mt. Rainier on the horizon. I miss that feeling that I can run forever... and then I read posts in these forums that suggest maybe, just maybe I'll experience that again someday. I have big decisions to make in 2008. I can't become a sedentary person waiting for symptoms to get so bad that I become a medical emergency.

If anyone has bothered to read this far, thank you. If anyone is at the same stage I'm at right now... I wish you the best of luck and will suggest we say a collective prayer to get through this together. And if you're a runner at the same stage I'm at, I KNOW you understand exactly where I'm coming from. Most of all, to the person or people who dreamed up this web site and to those of you who help maintain it and to those of you who are so willing to share personal stories and advice: from the bottom of my laboring, enlarged left-ventricle heart, I thank you.
 
Welcome to the forum, sorry you have to be here but glad you found us.

I can relate to most of your post. Going out for long rides was always my escape, as things progressed it got harder and harder for me to go for those rides. Finally before surgery I was struggling through 3 mile rides. Now one year six months later I am back to doing 30 and 40 mile rides again. I haven't been able to do that in years.

I had my valve replaced in my late 30's and unfortunately I waited longer then I should have. The damage has not reversed as so many others have. This has confirmed my opinion that if the condition is forcing you to change your lifestyle then it needs to be corrected. Probably not what you wanted to hear but think about how miserable you will be without running.

Good luck.
 
Denial?

Denial?

Hi Sailor,

If you've been visiting this forum for awhile, you're probably aware that the denial thing is something many of us have been through.

Almost twenty-eight years ago, a cardiologist told me I needed to have my aortic valve replaced or I wouldn't live until I hit thirty. He also told me to adopt a sedentary lifestyle. I tried the lifestyle change for awhile, but it wasn't for me. Neither was immediate surgery. Unfortunately, after almost twenty-eight years of not slowing down I was faced with an aortic anneurysm that was about to blow and an aortic valve that needed to go.

Fortunately, the denial thing passed and I realized that the repairs I needed would probably give me a new lease on the pursuit of those activities I wanted to continue doing. Other members of this forum can vouch for the fact that many of us engage in rather strenous physical activities. We've got runners, cyclists, hikers, climbers, golfers, sailors, etc... I think you probably get my point.

In my opinion, getting a valve replacement is about giving yourself the chance to continue pursuing the activities, relationships and the life you enjoy. One of the nice things about being human is our remarkable ability to adapt to the challenges and changes we face. We may not like the challenges and changes, but we can deal with these issues.

Yes, the clicking valve thing is still kinda strange, and I don't like having to remember to take my coumadin every night, but these issues really aren't a big deal. I suspect like many of us you'll find that AVR surgery will give you a new lease on your life and allow you to continue the activities you enjoy.

-Philip
 
Welcome

Welcome

Hello and welcome to our little community. There are plenty of runners here, so we all feel your pain! Some found out about their valve the hard way, and had surgery immediately, so like myself had some months between diagnosis and surgery. From my own story, I can tell you:
-find the right cardio for you. I had one tell me no running, and found one that let me run, esily, for another 6 months. He felt I would know when my body said it was time, and I did! When I couldn't run one mile, I knew it was time, and he agreed. He didn't do any more tests, etc., just took my word.
I was back running in 8 weeks...
Good luck in your journey and keep us posted...feel free to ask any questions.
 
Welcome, sorry for the reason, but glad you found us. Let us know the echo results when you have them in hand and maybe we can help interpret them. It is a shock when you first hear it, but knowing ahead of time gives you the opportunity to research all options and become an informed patient. Look forward to your participation here and sending our best wishes.
 
Welcome,
i dont have any advice just wanted to say good luck and best wishes for the future
 
Hey, Sailor, from the opposite side of the U.S. Welcome to VR.

You are telling a story we have heard quite a number of times, as you can see by the previous posts. There will be more of them as the day goes by. You can also see that they have recovered, can run or bike or climb, etc. You will, too. You are doing your homework and by now know that it will take some time to get yourself back, but it will happen. We'll be right here with you all the way. Blessins..........
 
Welcome!!!

Welcome!!!

Hey Sailor,

This is CHD Doug's wife, Heather, welcome aboard!!!
My husband, 33 yrs old Bicuspid aortic valve and in the waiting room, is in your same situation.
He has been a very active and healthy guy all his life until 4 years ago when we found out he had a BAV and has had to change his weight lifting regimen and lifestyle. He did run a 10k 2 years ago and hasn't been able to run more than 2 mile since, so exercise at this point does adversely affect the compromised function of your heart, my husband is living proof!
Suggestions, you need to find out all your defects, bicuspid or triscuspid, regurgitation rate, stenosis etc. before you decide on what route to take.
My husband has selected the Ross procedure but we are still awaiting to meet with 2 other surgeons to make sure he is 'truly' a candidate.
At this point, it is much better to be proactive and go in early, or should I say electively rather than emergently when you don't have so many options.
We have selected to get an opionin from Dr. Paul Stelzer, whom is considered one of the best at the Ross procedure, as he has performed over 400 RP surgeries.
I am not sure of your age, as they like to normally perform the surgery on patients under the age of 45 but that is not for me to say, each heart case is unique and only the surgeon can teel you his honest opinion.
I do wish you the best of luck in making your decisions and there are alot of wonderful people on this website to help guide you every step of the way!

Heart Hugs,
Heather Ann
 
Welcome!
If they suspect a bi-cuspid valve, make sure they also check for aortic aneurysm. I'm not one of the experts here on that but I believe a CT scan is needed to assess the aorta. Echos aren't always good diagnostic tools for aneurysms

I have to say I agree with you - if your normal life-style is being inhibited by your valve problem - get it fixed. The doctor who wants you to wait 1-2 years is not in your shoes. Plus - it would be better to plan it and arrange your work and family life around the surgery rather than have to quickly work it into your life.

Best wishes!
 
Welcome Aboard Sailor !

Obviously you would be interested in a High Performance Valve (with Low Pressure Gradient).

The Best Tissue Valve (i.e. Lowest Gradient) seems to be the Stentless Porcine Valve which has been in use for around 12 years based on what I've seen so far. Some of our members are hoping to get 20 years out of that valve but it is not clear to me what that estimate is based on.

The Bovine Pericardial Tissue Valve has a good long term history (90% durability at 20 years in older patients) and the improved versions (with anticalcification treatments) are hoped to extend that to 25 or more years. The down side is a higher gradient across the valve. We do have some runners with this valve. It is not clear (to me) at what performance level this gradient begins to impose limitations on exertion.

To my (engineering) mind, the (Third Generation) On-X Valve offers the Best Performance of the Mechanical Valves, both in hemodynamics and reduced morbid event rate. See their websites www.onxvalves.com and www.heartvalvechoice.com for more details.

We have several members who have had Surgery in the Greater Seattle Area so perhaps some of them can make specific recommendations for local surgeons.

Your Cardiologist is right, there is a significant risk of sudden death with Aortic Stenosis. You see that sometimes in athletes who die suddenly on the field (or basketball court) with a "previously undiagnosed heart condition" so consider yourself lucky to have discovered your 'heart condition' while you still have time to Fix It.

I am a proponent of the "Sooner is Better" philosophy for first and second surgeries. The SUCCESS rate for first time surgeries in patients under age 60 is 98% with a 1% risk of stroke and 1% risk of mortality. This is WAY better than the alternative of doing nothing and waiting for nature to take it's course.

Keep doing your research and when you find the valve whose negative aspects (and they all have them) you can best live with, find a surgeon who has experience with that valve and 'get it fixed'.

Best wishes,

'AL Capshaw'
 
For the "new guy" sailor

For the "new guy" sailor

Nice post; well worded and compelling. Welcome to the site; glad you found it. You will find much helpful information here and hopefully you'll be out running again... uphill and loving it. Best wishes and post again.
 
Welcome to VR . . . . sorry it's under these circumstances.

When you receive your echo reports, see what size your opening is and what the gradients are. Those numbers will probably determine, to a great extent, when you will be operated on.

If your left ventricle is enlarged, you will get a quicker ticket to replacement.

If you feel strongly that you need surgery sooner rather than later, then make an appointment with a surgeon and see what he/she has to say.

Many of us have been through almost exactly the same situation, so we know where you're coming from.

Good luck and let us know what you learn.
 
"Denial" is only a stage you must pass thru to get to "Acceptance". I am also a firm proponent of "sooner is better than later". Once fixed, you will be able to do all that you did before, only better. :D :D

I can't offer advice on valve technology, hospitals, surgeons etc. since I'm out of the "dinosaur" age, but for what it is worth, many have successfully walked the path you're on.
 
There were parts of your post that made me think I was reading my own biography (not the getting up at 4:30 part - that's ridiculous). I had always been a runner, and had completed eight marathons before things went (figuratively) downhill. The last one I ran was in about 3:36 in December of '04. In June of the following year, I decided to start training for another marathon, but everything was suddenly different. I would get chest pain when I ran, would start wheezing at times, and just plain didn?t feel right at all. After several doctor visits, I was sent to a Cardiologist, who diagnosed me with mitral regurgitation. Up to that point I had never heard even the suggestion that I might have a cardiac condition. I was also given severe exercise restrictions and basically stopped from doing many of the things I enjoyed spending my free time on. Through additional tests, my regurgitation was deemed to be severe, but I was told I could probably hold off on surgery for awhile as it was not causing infringements on my ?normal? life (I only had symptoms during strenuous exercise). After some careful consideration, I decided to push ahead with the surgery as quickly as I could. I personally could not imagine wasting my late 20?s and early 30?s not being able to run and basically waiting for myself to spiral downhill enough that my surgery would be absolutely necessary. I ended up on the table almost one year to the date of my last marathon in ?04. I still have not been able to get back to run a full yet (perhaps a goal for ?08), but I did run a half on the 13-month anniversary of my surgery. The time was not my best, but it was sub-2:00, which was a big goal for me. The best way to look at this is a temporary bump in the road of life, and something that can be conquered and left in the rear-view mirror.

Best wishes going forward.
 
Hello from a few hours down the I-5! Welcome to our world! We'll have you up and running faster than you can imagine!!

Since your heart is already showing signs of change, I agree with Mary... it's time for a consult with a surgeon.

Cardiologists tend to want to have you hold onto your native valve as long as is humanly possible. Surgeons are knife happy and want to dive right in. Somewhere, in this dance, you have to cut in and make your move.

Obviously, since you are longing to return to your running habits I think you need a second opinion from a cardiologist..... or just go right to a surgeon.

I had a 3 year wait after the initial shock of impending surgery. I got very impatient during that time, watching the valve close up slowly, slowly, and finally just asked the cardio when she called in the surgeon. She said, when it gets to .7, or when symptoms warrant it. Please ask your cardio when he/she calls in the surgeon. If you discover that you aren't willing to wait, then ask the cardio to recommend a surgeon or 2 and see what their advice is. You may need to have an angiogram first, though. That was what my surgeon required before he would meet with me. That is something the cardio does.

I think it is important to get things fixed before too much damage occurs to the heart. Try to get a reading on what changes have occured so far. Timing is important. Share your numbers with us and we can help you understand what kinds of questions are useful to ask.

Don't worry. Hard to accept, but you're going to be fine!!! This is a very do-able thing. Very.

Best wishes!

Marguerite
 
Welcome to this community. These wonderful folks are truly lifesavers and I couldn't make it through my son's problems without them.
As for you, IMHO, RUN to a surgeon. If you are already showing decline - and an enlarged left ventricle counts, then you need to have your surgery soon. I see so many people on this site go back to normal lives after their surgery because they catch it before permanent damage takes place. You have a long wonderful life in front of you. Get this taken care of soon so you can get back to running, etc. I don't see any benefit to waiting.
As for what kind of valve to choose, rest assured that they are ALL good valves and whatever choice you make will be the right one for you.
 
Hello Sailor, welcome to the group.
I was the queen of denial.....I just could not get a grasp on OHS and had not found this site.;)
I stalled for 2 years until my symptoms were constant and dangerous, not a good place to be.
Once you choose a surgeon things will fall into place and make more sense.
We are all here for you.:)
 
Hi Sailor,
I just want to further stress that, regardless of what the echo says, if you are no longer able to run and that's an important quality of life issue for you, you can push to have your valve surgery done sooner. There are cardiologists who think it's better to postpone surgery as long as possible, but you are going to have to have this surgery sometime. Whether it is now or in six months or 18 months doesn't really matter much, especially if you go to an experienced surgeon, likely to have success rates around 99% for someone your age. I pushed to have my aortic valve surgery sooner than recommended and was extremely glad I did. Best of luck, Kate
 
Not sure how much help I can be but I did want to welcome you. This too shall pass and you will be back to running.
 

Latest posts

Back
Top