New to the Site - AS with Valve Replacement imminent

[andyabernethy]

Hi Guys

I'm so glad that I've found this site. It's very reassuring to hear everyone else's stories about pre or post valve replacment ops.

I am 35 years old and have Aortic Stenosis. I have always been asymptomatic and very sporty including cycling and regular trips to the gym. At my last check up the Echo showed the gradient was now severe and valve replacement should be considered sooner rather than later. I am now being referred to a surgeon. Although I have always known this day would come it has been a blow as it seems to have deteriotated very quickly.

I have been informed to continue my keep fit regime but avoid strenuous excercise. I have also been informed to report symptoms immediately like shortness of breath; dizziness or heart palpatations. The problem is I'm not sure when a sympton is a sympton if that makes sense. I hardly ever feel palpatations or shortness of breath when I am cycling (sometimes for hours) however sometimes when I climb the stairs I feel a little short of breath. I'm not sure if that's a symptom of AS or a just a normal reaction to sudden movement. Also when I stand up quickly I can feel a little dizzy. I know it's hard to gauage but I would be grateful to those who have been through this to give shed a little knowledge of when I should be really worried and informing my doctor.


Thanks in advance for your replies and all the best whatever your situation

Andy

 

[Bill B]

I understand your problem with identifying symptoms. I felt symptom-free before surgery despite a tiny valve opening and high pressure gradient that was getting worse month by month. If you are still able to bike for hours and how you feel doing so has not changed, then you are still in remarkably good shape. That doesn't mean your heart is not suffering. I would look for changes in how you feel. Dizziness on rising - is that new? That could be one. If there is no significant change, I can't see calling your doctor. BUT I would be more interested in the surgeon's appraisal. I never had any significant symptoms prior to surgery, but my valve was so tight and calcified that my surgeon recommended surgery within 4 months, worried that I might be fine then have a catastrophic event. I took his advice. It is better to have the surgery when you are still in good shape. Symptoms such as SOB and dizziness mean that damage is being done to your heat and the longer that damage accumulates, the less complete the recovery is likely to be. It is "traditional" to wait for significant symptoms but that is becoming increasingly old-school.

 

[ottagal]

Hi Andy,
Wanted to wish you a warm welcome to VR.com . It too came as a blow for me when I was told surgery was imminent. I had a hard time figuring out whether I was symptomatic or not and was very active prior to surgery. I concur with Bill's explanation about symptoms. I have to say I drove myself crazy trying to figure out whether I was symptomatic or not. I ended up being monitored for a year and a half with severe stenosis, but when the valve size decreased and the pressure gradient went up, the surgeon recommended surgery regardless.

This is a great place for support and info. Feel free to ask any questions. All the very best,

 

[andyabernethy]

Thanks Guys. I'm very grateful indeed for your comments. Based on your helpful insight I may start a 'symptom diary' to better assess if any of these potential signs are significant changes or not. It's comforting to know that I'm not alone in driving myself crazy about potential symptoms.

 

[Philip B]

Rapid Decline

Rapid Decline

Hi Andy,

Despite working and playing hard throughout my life, I never encountered any symptoms. I even skipped having my valve monitored for twenty-seven years. A trip to the ER for a cut finger resulted in the ER doctor givng me a hard time about my heart murmur and she got my wife started. I gave-up after constant nagging from my wife and several telephone calls from the doctor, and scheduled an appointment with a cardiologist. Those women undoubtedly saved my life as it was time to replace my aortic valve and deal with a 5.8 cm aortic aneuryism. Right up to the morning they wheeled me into surgery, I never did have any symptoms.

The good news is that it sounds like you're in pretty decent physical condition. This will probably give you some advantages when dealing with recovery and rehab.

If there are concerns about continuing to maintain your current level of exercise, you can always back-off to base level exercise. With cycling this is pretty easy. You simply ride at a level which doesn't elevate your heart rate significantly. Just ride at an easy, relaxed pace.

Imminent is not a bad thing. Get it fixed and get back to living your life the way you want to.

-Philip

 

[Luckyguy17]

Andy,

Welcome to the VR forum, happy for you that are already getting benefit from the related personal experiences of the members, reassuring huh!

It is really nice to have the information on this VR forum, to supplement what the medical professionals can provide. The problem with the medical professionals is that they have likely rarily lived OHS themselves and their information is from observation and information expressed from patients, whereas members have lived it and are living it and therefore can express their personal experience, good and bad....but always real and from a 1st person view. There is so much human variety and therefore often some variations in pre op and post op experiences!

Symptoms: in my case, when asked by the cardiologist, my standard reply to the cardiologist was, "I am not sick enough to undergo the pain of OHS and recovery time as well as the resulting revised lifestyle, meds included".

Lucky for me that my cardiologist was persistent in having me get the tests done and my argument could not stand up to his mounting statistics, that my aortic valve had reached a state of severe stenosis and surgery was needed, mitral also, for lifesaving. The new choice became...living vs. compromise in lifestyle, a pretty easy decision, when it comes down to that.

But even though my test numbers of echo and cath graded my condition as critical, I still cannot say i had/felt symptoms pre op. But here I am less than 40 days post op and i must admit that i feel very good and in many ways/correction most ways, i actually feel better than i felt before the operation.

From your last paragraph, it sounds like you are possibly less than 6 months from surgery, when told to slow down..it is coming soon.

What does your cardiologist estimate for timeline and is your condition BAV?

Gil

 

[ARGreenMN]

Hey Andy, this is Andy, lol. You sound similar to me in some ways (and no, not just in the name). I was told at an early age (12) I had a murmor and it was likely a bicuspid valve, which would someday probably need surgery. Many years (decades) went by, and I'd only go to the doc when absolutely necessary (which was pretty rare). Then, when I was probably about 40, my wife at the time insisted I go in for a physical because it had been years since I'd been in for one (not because of the heart thing so much, as for just preventative maint.). I finally went in, and that probably saved my life. The doc thought my murmor was pretty loud so he wanted me to go to the cardiologist. Long story short, after being watched by him for a few years, I started to get some symptoms (which I again tried to ignore and/or convince myself they were something else). The shortness of breath on the stairs thing is very familiar to me. It was perplexing to me that I could still easily go on the elyptical machines at the gym for a half hour, but I was starting to get more and more noticeably short of breath going up hills or stairs. Couple years ago I had a scary event on the basketball court, which I tried to ignore (except I did quit the league as of that game), then had another one about a year ago in a pickup game (had been playing again, at a slower pace, for a few weeks at that point). Again, I tried to ignore it, knowing it was probably time, and I didn't want to get the surgery... Finally this spring I decided I better not wait anymore because now I was getting more and more back pain that was radiating into my chest and the SOB was getting even worse. Anyway, man am I glad I finally went in, because my valve was pretty severly calcified. And now, 7 weeks post-op I feel like I have a new lease on life. Don't feel like I could keel over at any time like I felt for years. So, point is, that shortness of breath on the stairs thing, and the lightheadedness (which I also had) are serious enough to be taken seriously and make sure you mention them to your docs... Having been through the surgery now, I am happy to report it is not as big a deal as you're probably thinking, and there are many on here who will echo that sentiment. So when it is time, don't delay - git er dun! You'll be ecstatic you did! Keep posting questions, and keep us updated as you find out more!

 

[Mentu]

Andy #2, like Andy #1, I now recognize that I had symptoms a couple of years before my AVR but I never thought about them that way. Periodic shortness of breath, pain in the side, dizziness when standing and all of them when walking up stairs became increasingly more pronounced. That increase was so gradual that I could blame them on the heat or the exercise or not enough exercise or having a cold....doesn't everyone experience these? In the past two years, I also noticed that I was experiencing an increasing number of minor infections. When I talked with my family Doctor about them, as good as she has been, she never associated them with the heart valve because we believed it to be stable. Still, something was depressing my immune system. Last year in July over a period of 2 weeks, my symptoms became worse. I also began having severe palpitations and finally radiating chest pain.

I repeat this as another demonstration that mild symptoms can easily be written off as something else and over a period of just a few weeks they can become debilitating. By the time I stopped working a week before my AVR, I had to lie down for an hour every two hours just to get through the day. If you can spare your self experiencing more intense symptoms by getting your heart repaired before things degenerate, you will do yourself a very good turn. Hope all goes well for you.

Larry

 

[RunMartin]

Hi Andy,
You experiences seem very similar to my own. I had know about the BAV for 23 years. I was very active and could easily run 30 miles+ and swim 3 miles up to 6 months before surgery. I used to train every day and thought I did not have many symptoms. The problems was that I had grown up with the aortic valve getting worse so I never realised the symptoms. They were there all right but were dismissed as a virus, tiredness etc. especially during the year prior to surgery. I did get dizzy spells and headaches but never accepted that they were related to the heart problem. Once things start to worsen they never get better so it is best to take a deep breath and get the surgery done. The sooner it is done the sooner you will feel better.
All the best
Martin

 

[RunMartin]

I have just noticed that you are from Manchester. Do you go to Wythenshawe hospital? I had my surgery there (Mr Hooper) and my cardiologist is Dr Macnab.

 

[andyabernethy]

Thanks to everyone of you (Andy; Gil: Phillip; Larry). I really do appreicate it and all really helpful comments. It's amazing how similar your experiences are. I have been having difficulty processing the fact that the stenosis is now severe and this has been an immesurable help. (Yes Gil - Its BAV).

I just got up to get a coffee just a moment ago and felt a little dizzy. Last year that would be put down to the heat or need for food. I now know that despite my excercise tolerance levels still being good I am starting to display symptoms. Time to suck it up and get the surgery.

Hi Martin - Nice to see another Northwesterner on the site. I am from Cumrbia originally but lived in London for years until last year when we moved to Manchester. I am therefore still with the Royal Brompton in Fulham. There is a chance I will be transferred to Wythamshawe prior to the surgery - we wll see. If I am I will be bothering you for information on Messrs Hooper and McNab. Are you excercising again post op? And if so how is it? Noticeably easier?

All the Best

Andy

 

[RunMartin]

Hi Andy,
I am doing a small amount of exercise compared with before surgery (easy swim/jog). I must admit for me the progress is very slow and I have an erratic heartbeat. Last week I felt really good, this week I feel weak and have had a few moments of light headedness (probably overdid it last week!). I am probably the exception rather than the rule as most report that they feel good after 20 weeks.

Cheers
Martin

 

[ALCapshaw2]

It is not uncommon for some (usually 'elderly') patients to take a longer time to realize the full benefit from their VR Surgery. If you were 'out of condition' prior to surgery then you will also need to 're-condition' your muscles, and that takes time and effort.

"Erratic" Heartbeats should be reported to your Cardiologist. There are several medications that can successfully control these episodes. Arrhythmias can definitely leave you feeling weak and 'dragged out'!

'AL Capshaw'

 

[RunMartin]

I have just been to see my doctor as I felt really good first thing today (and yesterday) but had a bad spell once I got to work. The heart rate seem stable at the time (I had a heart rate monitor on). The doctor also had my results from my 24 hour monitor which was done a month ago. The cardiologists report said they found a few ectopic beats and also said I was a borderline case for a pacemaker. The cardiologist who ordered the test is not in any hurry to do anything at the moment (wait and see policy??). I am getting a little fed up with the slow progress so far. I am sure others have been running further and quicker after 20 weeks. I felt quite good until last week when I increased my exercise to swim half a mile in 15 minutes instead of 16 and ran more of the small hills (3 miles).

Martin

 

[ARGreenMN]

Martin, when were you able to start running (vs. walking)? I'm at 8 weeks post-op and the cardio rehab folks still have me walking, but I'm getting up to a speed where it's getting harder and harder to walk and not run. They say they have a policy (mostly to prevent the others that are in rehab with me from feeling bad) that prevents them from letting me try running. I know it's progressing slowly for you (and sorry about that) but just curious what you found in terms of being able to start jogging again. Do the arrythmias get worse when you run? I'm having some arrythmias too (even went into a-fib a couple times a few wks ago) and have been on Amiodarone to control that. But I'm hoping my cardiologist is right that'll all go away by the 3 mo. mark or so. I'm hoping to play basketball this fall, so feel like I need to start running soon.

 

[RunMartin]

Hi Andy,

I started running (well jogging) at about eights weeks but only short distances. I would walk up a hill and have a steady jog down (1 mile). Most of the problems seemed to come from jarring the sternum (and other bits that had been cut). I also found even a short run uphill difficult at that time. If I had my time again I would hold back from trying to run for a little longer. The arrhythmias seem to go away when I am running or walking. When I had my 24 hour monitor on last month I walked up a very steep hill and jogged down and it did not seem to produce any comment from the cardiologist from the results. I am used to training everyday and it is very easy for me to push harder than I should. When I push too hard I seem to pay for it a few days later. Everyone says take it easy and they are right but it is very hard not to sometimes!

Martin

 

[ALCapshaw2]

Martin,

One of our (many) sayings is to "Listen to your Body".
It knows what it can do and what it can't do.
It is NOT uncommon for patients to want to "Push" their capabilities,
and they often pay the price as you are finding out.

I KNOW, it is hard to be Patient, but Patience is a Virtue, and often necessary in recovery from OHS.
Nobody said you have to LIKE IT
We've had several members report that they continued to improve their exercise capacity for a Year (and more).

The GOOD NEWS is that you Will Get There. It just takes Time, and sometimes More Time than we would like.
That's just the way it goes for some of us. Sorry about that... Keep on Keepin' On but try to pace yourself.

'AL Capshaw'

 

[RunMartin]

Thanks Al -)

 

[ARGreenMN]

Thanks Martin. I feel like I could start running a little now, but I'll ask the doc tomorrow (going in for a checkup). But will watch out for the jarring of the sternum - I can see how that might shake things up a little and cause some irregular beats later on. I've noticed, like you're describing, that my irregular beats happen at rest - not when I'm exercising. Did you have any side effects from Amiodarone? I've been on it for about 6 weeks now, and am expected to stay on it for a total of 3 months. So far I don't think I've noticed any side effects, unless my blurry vision is being caused by it (going to eye doc today to get a long overdue checkup). Or, unless the weird taste in my mouth is from it.

 

[RunMartin]

The only side effects I had with Amiodarone was getting burnt very easily with the sun. When I first took Amiodarone it was via a drip for 24 hours (emergency). It seemed to burn my arm and was sore for days. I had problems with my eyes after surgery but it eventually cleared up after about a month but I do not think that was amiodarone. Take it very easy when you start training. I did not go to cardio rehab for 12 weeks and it was only there that I realised that my way of taking it easy was not the same as the doctors.
Cheers
Martin