Recently diagnosed (like Hours ago)

[JeffB]

Well, I was told as a child that I had a bicuspid valve, and about the only think I really knew was that it meant I had two flappers instead of three... Life goes on right?

I went in for a full physical two weeks ago which started a slew of tests (needed) including an abdominal cat scan which resulted in an appointment this Friday for a colonoscamy (sp) surgery next to my spleen , x-rays of my lungs (ok) and an ultrasound of my heart.

A couple hours ago I was told that I need to see a cardiologist about my heart. Apparently I have stenosis and my valves are insufficient according to the nurse with a littp bit of prying. Man it's hard to get the nurse to just read what the chart says... Anyway, I'm assuming at this point that it's my bicuspid valve since I occasionally get a flutter which I read earlier today was probably caused by valve regurgitation.

Here are some personal details about me.
I am soon to be 43 and as a teen, I was a very active runner.
I quit smoking almost 5 years ago. I smoked 2 packs a day for just over 21 years of my life...
I currently weigh 156lbs. Up 6 pounds from 5 weeks ago (this is a good thing).
I am 5'-10"
My blood pressure is good according to my physical (110/80??)
My pulse sitting down hovers around 58-62. My heart rate laying down half asleep is 43 according to the cardiologist last week when I had my Ultra sound taken.

I ran my first 5k three weeks ago (felt like I was going to die!) and with my new heart rate monitor, my maximum heart rate at a full run at the end of the race was recorded at 199bpm. Before the race, my adrenaline was so high, my heart rate just standing doing nothing was around 154.

Around 6 or 7 weeks ago I was tired of always being tired and since I now sit at a desk all day, I wanted to take up running again. So I did. It took me almost 2 weeks to make it 1 1/2 miles non stop. I had the leg muscle to go further, but I didn't have the breath. Often my hands would get very cold (even with gloves) and I learned early on that when the headache set in, slow down or I'd pay for it for the next several hours. A tell tell sign just before the headache was a pain in my right shoulder.

My hands don't get cold anymore and neither do the headaches. The pain in my shoulder now appears just before my second wind around the 3 or 4 mile mark depending no the intensity of the run, but I can usually run through it.

At a slow pace and keeping my heart rate below 150, under 5 miles is a pretty easy run and I have a lot of extra energy at the end. If I keep my heart rate in the high 160's or low to mid 170's, I can clip off 3 miles, but it's not easy driving through that wall.

Last Saturday I ran with a group of elite runners and I actually made it 8 miles with my heart rate running in the high 150's and low 160's. (I was thankfull they slowed down for me). I could have kept running if my legs were in better shape, but my legs just fell out from under me and I'm now paying the price with a knee issue (quads not strong enough to hold the knee in place)

After a good run, I also experience night sweats.

Since I've started running, I have felt this odd feeling in what I found out from the ultra sound is actually my heart. I'm not sure what to make of that yet.

I have not talked to the cardiologist yet, but I am concerned and my doctor is out this week on vacation... so... Does anyone here think that I'm at any kind of risk at continually pushing myself (and I push myself very hard) at damaging my heart? With my knee injury, I still can't run as I was reminded last night and ended up walking home in discouragement just under halfway through my run, but I can bike, so I wouldn't mind riding for about an hour keeping my heart rate in the low 160's.

Any thoughts? Any questions?

Is this stenosis and insufficient bicuspid valve stuff something to be worried about?

Thanks,
Jeff

 

[ottagal]

Hi Jeff,

First of all I wanted to wish you a warm welcome to this great forum and know that you are not alone. It is always a shock to get any kind of news even if you have known about a bicuspid valve all your life. Call it denial, but I never thought that I would ever need surgery and if I did, it would be much later in life. I have been active most of my life i.e vollyeball, cycling, aerobics, tennis etc. It is always a shock when you get the news that 'oh..oh'...something is up with that valve now.

Last spring, my stenosis was diagnosed at the severe stage and my cardiologist told me to modify exercise i.e. no heavy lifting, no volleyeball, only leisurely walks and bike rides were allowed with very light weight lifting if any at all . Some cardios place more restrictions depending on the situation and their own experience. By the way, I also pushed hard a year previously sprinting on my bike and almost passed out (not a good thing). Yes, there are risks associated with this esp. with heavy lifting. Keeping active is important, but within reason at this point until you see your cardio.

If you read through the thread and posts, you will see many people do very well after surgery and I have been told time and time again that the waiting is the worst.

Others will chime in to give you their thoughts on your query. Keep us posted and feel free to ask away. All the best...

 

[JeffB]

Thanks for the warm welcome ottawagal and I see by your signature that you also have stenosis.

I've read through many of the threads in both this forum and the bicuspid forum and yes, it is very encouraging to see other people out there running 10k's after surgery. I'm actually signed up for a 10 mile run (the Crim) in August and I wanted to sign up for a few 10k's in between.

In all though, I'm not taking the news very well... especially since I've just started changing my lifestyle to become healthier.

Thank you for your welcome and your encouragement!

Jeff

 

[bugchucker]

Hi Jeff and welcome! I'm 37 and had OHS 22 days ago to replace my bi-cuspid aortic valve and aorta. I had an arotic aneurysm ot 4.7 cm. I too was very active (skiiing, biking, running, sailing, etc). I really did not have many symptoms, I felt tightness in my chest and shortness of breath after minor things like tying my shoes.

Like Ottawagal said, each cardiologist is different. Mine shamed me back into running after I fell into depression after learning of my pending surgery. I'm no expert, but in your shoes I would probably err on the safe side and reign it in a bit on the exercise until you can consult with your cardiologist. I certainly would continue daily exercise as long as it does not cause any discomfort, chest pain, shortness of breath, tightness in the chest, etc. You have found a great forum and a wealth of information and experience. My recovery has been better than text book. I can't run yet, but I'm now walking 6-8 miles/day.

Keep us posted on your future cardio visits, I'm rooting for you!

 

[ALCapshaw2]

Welcome aboard Jeff!

For starters, you may want to read through the Bicuspid Aortic Valve and Connective Tissue Disorder Forum for LOTS of info on your condition and possible CTD issues.

You would be well advised to seek out a surgeon with experience dealing with BAV and surgery of the Aorta (which is a step above and beyond 'mere' valve replacement surgery.

My mind is drawing a blank on the name of the Major Heart Hospital in Royal Oak (Belmont?) which is actually ranked higher than UofM for Heart Surgery. Then there is the Cleveland Clinic which is the #1 rated Heart Hospital in the nation.

Feel free to ask any Questions that come to mind.

'AL Capshaw' (Go Blue!)

=================\

EDIT -

Here's the info on BEAUMONT in Royal Oak from member Rich in a previous post:

mentioned you have one of the top heart centers in the world right here in Michigan. I think Al might have been referring to me about the stats regarding Beaumont Hospital in Royal Oak. They have done more heart surgeries than ANY hospital including the Cleveland Clinic and have a great success rate as well. I am originally from Cleveland and could have easily gone to the CC, and even could have stayed with extended family still living there. But I found the best was right here in my backyard. Heck they even did the first successful valve replacement thru a catheter, and I have met that patient and he is doing just fine to this day.
At any rate here is wishing you the best and a safe trip home no matter how you do it.
Rich
__________________
Rich
AVR 7-29-96
St. Jude Mechanical
Wm. Beaumont Hospital
Royal Oak,Mi.
Dr. Paul Clancy

 

[JeffB]

Thanks for the welcome bugchecker!

When I first started running, my chest really hurt (burned) and the tightness always came after the run when I was sitting down. One time I couldn't breath at all for a few seconds, then as my lungs loosed up, they began to fill up with phlem. It took over a week to cough that junk out of there and btw, I could taste the cigarettes from 5 years ago! Ick!

I think the main thing that I notice is how every once in awhile, for no apparent reason I'll just take in a big breath of air. I kind of find that odd... Also, I have been feeling this aching sensation just under my lower left rib cage which I found out during the ultra sound was actually my heart. Does anyone know why it aches? Could it just be because of the recent life style change or is it part of the problem I have?

Your amazing though! 22 days after surgery and your walking 6-8 miles a day! That just blows my mind!

 

[JeffB]

Hi Al and thanks for the welcome!

CTD???

If I have to have surgery, Cleveland isn't' too far of a drive if I could get in. (I live just north of Detroit)

All of this is so new to me... It's a lot of information to digest at once.

Thanks!

Jeff

 

[SumoRunner]

You sound like you've had too much caffeine. Calm down a bit. This ain't the end of the road. You mostly suffer from type A personality anxiety.

1) You haven't spoken to a cardio yet, so you don't really know how bad you have it, or how good. He/she may tell you to keep on truckin and wait another 4-5 years to get anything done. Or it could be time now but don't get your undies in a bunch over it until you can sit down with one and discuss it.

2) A nurse can get in a ton of trouble for telling you too much. Don't press them. They are not allowed to interpret much from your charts. That's the doctor's job.

3) Out of breath, burning lungs, headaches, shoulder aches, night sweats, all symptoms of a newbie runner who's been pushing too hard, also a lot of that could be due to too much caffeine, nothing to do with your heart defect especially. An insufficient pump will make that worse of course, but again the cardio will tell you by how much. If it's truly harmful to run, then he'll say so and your surgery will be scheduled for sometime in the next 6-8 months. If not then he'll say keep running as you have been and come back to check again next year.

4) You are trying to run too hard for a newbie and the pre-race anxiety, as evidenced by a high HR before the gun, made it tougher than it should have been. It takes a lot of training and a few more races before you can settle into your best pace. Meanwhile, just go back to normal training and run another race or two under control until you learn how to set a pace.

 

[JeffB]

Hi Sumo and thanks for the welcome!

Thanks also for all your input. Your Type A comment gave me a chuckle as I was sipping on my juice box eating a pear LOL! I’m somewhat anti-psychology, but after reading your post, I went and took a Type A Personality test from psychology today and I actually came up as being more the Type C kinda guy (I scored a 37) LOL!

I think I agree with most (not all) of this assesment
http://www.wittcom.com/DISC_C_personality.htm


Rich,
Thanks for all the added information!

 

[kodi]

Welcome JeffB. I really don't have much to add to what Sumo, bugchucker and ottawgal had to say. I think they pretty much covered all the bases. I would definitely slow down at least a little until you see your cardiologist and finish any other tests then with him/her make the determination of what you are able to do. I think some of the problems you are having are returning to running related, too much too soon. You are young but you are not a teenager any longer.
Good luck with getting everything sorted out.

 

[Dina]

Hello and welcome. I am your age and had tricuspid valve replacement over
a year ago. I have always been athletic but haven't ran in several years,
so don't know the norms on what is an expected BPM at the end of a race
or marathon,but *199 seems high to me since you really don't know your
heart function. I wouldn't push myself too hard in the meantime,especially
since you are relatively new to running long distances. Even those with
normal heart function shouldn't jump in too quickly.
I would make an appt soon,just so you know, and you want to catch it
before it causes damage. Your heart muscle is obviously not damaged at
this point...so don't wait until it becomes so.That was my mistake.
Also congratulations on quitting smoking,it takes alot of willpower to get
over that habit.
My best -Dina

*Sumorunner -Is 199 within normal limits for a runner? I know you read this,but I just wanted to be sure.

 

[ctyguy]

Hey JeffB...welcome !

You and I are the same age and it sounds like we have a similar history. I also had a bicuspid valve but I didn't know it until I saw the cardiologist. I was a smoker for 17 years (Marlboro Reds 1 - 1 1/2 packs a day) but I quit 11 years ago. About a year before my surgery I took up running and worked my way up to 3 miles without stopping. But over the next few months my runs got harder and slower. I didn't know why but I kept on trying. Ultimately I chose to see a cardiologist to rule out heart issues, needless to say it went the other way. By the time I saw my cardiologist I couldn't go more than a 1/4 mile at a 5mph pace without chest pain and some heavy breathing.

Here is my advice. See your cardiologist ASAP and figure out if you have an issue or not. In the mean time I would definitely wear a heart monitor when I run and see if there is a certain heart rate when you start feeling discomfort and SOB. If you do hit a threshold then simply stay a bit below that until you see your cardio. You might not run as fast but there is no reason to risk anything. Have you ever experienced a blackout when exerting yourself too much ? I did and about a year before my diagnosis and I chalked it up to a panic attack. When I told this to my cardio he told me that Im lucky that I was still among the living. That was a symptom of my valve not allowing my heart to pump the right amount of blood to my brain when I exerted myself. His words "for some the first symptom is the last". Don't mean to scare you but if that gets you to your cardio any faster then its all good.

If you do end up having to do something with the valve, no worries. Im 14 months post-op and two weeks ago I ran a 1/2 marathon. I wasn't particularly quick but I did it. Prior to my surgery if my heart rate got above 135 I had issues and would have to stop. Now when I run my heart rate is between 150 and 155 when Im running my pace and I've had it up over 170 without any problems. Now the issue with my running is my legs, not my heart.

Best of luck to you, hopefully your cardio gives you some good news.

 

[SumoRunner]

*Sumorunner -Is 199 within normal limits for a runner? I know you read this,but I just wanted to be sure.

It seems a bit high. The quick formula for HR Max is 220-age. There are several ways to calculate it so it might vary by 10-20, more so for a well conditioned athlete. So 199 would be normal for a 20-something and on the high side for 40-something. There is a lot of variation between individuals. Some have Kawasaki hearts and some have Harley-Davidson hearts if you know what I mean.

 

[ALCapshaw2]

CTD = Connective Tissue Disorder which often presents itself as weak tissues in the Aorta, resulting in an Aortic Aneurism with a fairly high correlation to BAV (BiCuspid Aortic Valve).

Did you see the writeup on Beaumont Hospital in Royal Oak I appended to my first reply? It may be worth checking out. Just be sure to ask any and all surgeons you interview about their experience with BAV patients and repairing / replacing weak Aortas.

'AL Capshaw'

 

[Debbie]

Hi Jeff, I read through all the posts and what stood out was you said-
For no apparent reason I need to take deep breathe's--
I remember before my surgery I needing to yawn alot-
I know when I took a good yawn I would get a good long breath!
I look back now and I was not in good shape!
I am so glad I got this surgery and I have my health back!
Go to the Cardio, see what's wrong and get it fixed.
You'll feel so much better!
Take care Debbie

 

[MissMelis]

Hi Jeff and warm welcome!
You are definitely in the right place - there is a wealth of information here, and lots of people who have been through the same thing!
Everone previous to me has posted all the good advice, so I don't have anything further to add - just keep us posted and don't push yourself TOO hard, especially until you know what's what.

Take care!
Melissa

 

[JeffB]

I just wanted to say thank you everyone for all of your comments. They are well appreciated. Sorry if this is long, but I wanted to thank everyone so far for your comments.

Melissa, thank you for such a warm welcome and yes, there is a great crowd of people here! I am so grateful!

Debbie, thanks for your input and your encouragement.

Al, Thanks for referral to Beaumont in Royal Oak. My son lives in Royal oak and is only an hour away from where I live.

Sumo, Your right about the variations between individuals. Doing the standard formula from the heart association of 220 – age would put my maximum heart rate at 177 since I’ll be 43 this summer. Let me ask you this. Is the maximum heart rate supposed to be what your heart is capable of doing or is it what is recommended that one not exceed?

Dina, thank for the warm welcome and yes, it took a lot of willpower to stop smoking, but that’s another story. Unfortunately it’s that same strong will power that can get me into trouble, especially with the way I’ve recently been pushing myself.

Kodi, What? I’m not a teenager anymore? LOL!!

The soonest I can get in to see a cardiologist is next Wednesday at 10:30. Until then, I will not push myself and will throttle back considerably.

Scott, you asked if I ever felt like I was going to pass out. The answer is yes, while the most prominent memory was when I ran my first 5k which like I said earlier was actually 3.8 miles due to a cone placement error. The run was hard, especially coming back through downtown with a strong head wind. I’m not going to lie, it took a lot of will power to keep going. As I got closer to the finish line, the crowd was yelling and clapping which really energized me and the next thing I knew, I was at a full sprint. Not sure if I’m able to post a pic, but if I can, that’s me with a heart rate of 199 and yes, I could feel myself starting to loose consciousness. Stupid huh?

I do own a heart rate monitor as I thought it would be a great tool to help me run, which it has. I purchased the monitor the night before the race. The whole race my heart rate ran in the high 170’s and hit low 180’s when I was blasted with the strong head wind. However, when I went back to my “Normal” run without all the excitement, my heart rate was in the mid 160’s and low 170’s keeping the same pace.

I joined a running club and started running with a 60 year old gal who averages a 10 minute mile. Considering my runs were around 7 minutes a mile and I was only doing 2 miles, slowing down to a 10 minute mile relaxed my heart rate around 146 which to be honest was very comfortable and before I knew it I had ran 4.8 miles and still felt great and since it was easy to breath, we had a fantastic conversation for the entire 52 minutes. We took a 10 or 15 minute break and she asked if we wanted to clip off a couple more miles, so we did. I felt great, even though the extra two miles could suddenly be felt in my legs. About 7 hours later my knee started hurting and it still can be felt. That was two weeks ago. Last Saturday I ran a quicker 8 miles with some quicker runners and walked / ran the last mile back to the shop while they completed their 10 mile run. However, I noticed that after the first three miles into the run, my heart rate actually dropped mostly in the low 160’s with it occasionally peaking around 172 when we would hit the hills. I’ve also noticed that my heart rate recovers quicker after a run and to be honest, I’m amazed. Like yourself, now it’s my legs, not my cardiovascular. It’s a great feeling to have made that transition.

My body is changing so dramatically and so quickly, I’m not sure what’s normal or what’s not normal which one reason I joined this forum is. I know that the passing out thing didn’t feel good, and I’m learning what to listen for, but like my knee, sometimes you don’t feel the negative effects until hours after the damage is done. Put it this way, a wise man once said,

A wise man learns from the mistakes of others. A fool learns from his own mistakes.

I’m trying not to be foolish.

 

[SumoRunner]

Doing the standard formula from the heart association of 220 ? age would put my maximum heart rate at 177 since I?ll be 43 this summer. Let me ask you this. Is the maximum heart rate supposed to be what your heart is capable of doing or is it what is recommended that one not exceed?

Well, now that you know what it is, you know what it is. You won't exceed it because it's your max. There's nowhere else to go, except down and it will go down as you age. Those formulae are meant to give you a basis for planning a training program in lieu of an actual measured number. Most training advice has you set your pace at some percentage of HR Max. 70% for easier runs, 80-90% for harder efforts. 100% can only be sustained for seconds, half a minute at most.

If you ever get put on a beta blocker drug, that will reduce your max HR and you have to adjust the training accordingly. I have been on a beta blocker for more than 20 years so I have no idea what my real max HR might be, but I can push it to 156 which is damn close to the theoretical max anyway. So without it, I would probably measure HR on the high side too.

At the other end of the spectrum is resting pulse. You can change that by getting fitter. The better shape you are in, the lower your resting HR can go. You indicated that it did go down to the low 40s which is generally either the range of elite athletes (I've known guys to get down to 36) or someone in need of a pacemaker. Too low a HR often means a defective firing control mechanism on the heart itself. Be sure to tell your cardiologist that you have measured 40-something and discuss it at length or he'll have you scheduled for an implant.

I?m trying not to be foolish.

Good luck. You'll be the first runner in history to do so if you succeed.

 

[Dina]

It seems a bit high. The quick formula for HR Max is 220-age. There are several ways to calculate it so it might vary by 10-20, more so for a well conditioned athlete. So 199 would be normal for a 20-something and on the high side for 40-something. There is a lot of variation between individuals. Some have Kawasaki hearts and some have Harley-Davidson hearts if you know what I mean.

Thanks for the information..I am a worrier by nature,and I usually slow
myself down too quickly when bike riding,I know I can do more but the
fear stops me..no wonder I can't drop this extra weight

 

[JeffB]

Ok, so met with my new cardiologist and here are the results of last weeks Echo. The below is an exact copy of what my cardiologist received from the echo from another office.

***************************************************

Interventricular septal thickness IVS: 0.8 (Normal 0.6-1.1)
Left ventricular end diastolic diam LVIDd: 5.3 (Normal 3.5-6.0)
Left ventricular end systolic diam LVIDs: 3.2 (Normal 2.3-4.0)
Left ventricular post wall thickness LVPW: 0.9 (Normal 0.6-1.1)
Aortic root diameter AO: 2.8 (Normal 2.0-3.7)
Left artrial diameter LA: 3.2 (Normal 2.0-4.0)

Interpretation: The left ventricle is normal in size and contractility. The left ventricular systolic function is normal. Estimated ejection fraction is 55%. There are no regional wall motion abnormalities. The right ventricle is normal in size, thickness and contractility.

The left atrium is normal in size. The right atrium is normal in size. The interatrial septum appears normal. There is no pericardial effusion, mass or thrombus. The IVC is normal in size. The aortic root is normal size.

The aortic valve is heavily thickened and calcified and probably bicuspid. The mitral valve is normal in mobility and thickness. Ther is no mitral annular calcification. The tricuspid valve is not well visualized. The pulmonic valve is not well visualized.

Color flow and Doppler shows normal systolic flow pattern. There is moderate aortic regurgitation. There is mild mitral regurgitation. There is mild to moderate tricuspid regurgitation. There is no pulmonic regurgitation. Estimated RSSP is 34mmHg. Peak gradient across the aortic valve is 14 with a mean gradient of 8.

Impression:
1. Normal left ventricular size and systolic function.
2. Probable bicuspid aortic valve with heavy calcification and moderate aortic insufficiency as well as mild aortic stenosis.
3. Polyvalvular insufficiency with mild pulmonary hypertension.

Dr. A. Smith
Attending Psysician
5-11-09

Ilana B. Kutinsky, D.O., F.A.C.C
Interpreting Physician
IBK /lks

*****************************************************

In all I'm pretty sure that this is a good sign. At least that's what my cardiologist said. However, since she did not do the initial echo, she is going to have me do another echo at her office and a stress test. She is also wanting me to have a ct scan.

She also told me that pretty much, all of my valves were leaky, which may cause some issue in the future, but wanted a ct scan, stress test and her own echo before she would go any further.

I go in for the echo, stress test and ct scan on June 16. Then I see her again on the 24th for the results.

Oh yeah, she wants me to keep my heart rate under 170 when running, but would be happier if I kept it around or below 150 - 160...

I look forward to hearing from everyone.

Another thing, Sumo, my heart rate was 47 laying down today at the Dr's according to the EKG.

Jeff