from the reluctant new guy

[BillB]

I'm Bill B, one of the new guys and I'm reluctant to post my story. The reason being..I feel absolutely terrific physically. But because of a recent exam/consultation with my new cardiologist, Im a bit emotionally outa' sorts! I am 55 years old, and about 4 years ago during a routine physical it was discovered that I have a BAV. My recent exam (Echo/Doppler and CT) revealed the BAV as being "mild-moderate" and a 4.5cm aneurysm where the aorta adjoins the heart (root?). The Cardiologist explained that one of two conditions that will necessitate having surgery:

1. The AV deteriorates to "moderate-severe"
2. The aneurysm progress to 5.5cm in size
(BTW...my old cardioguy's records..he moved out of town...
indicated that I had a 4.0cm aueurysm 2-1/2 years ago....AND HE
NEVER INFORMED ME!!)
Either of the above will mean surgery whereas both situations will be repaired/replaced.

He also stated that surgery might be avoided should things stabilize. I will have follow-up CT's and Echos every 6 months from now on. He replaced my Altace with a beta blocker called Atenatol. I was told me to continue using the treadmill (120-130 BPM)...but has limited my lifting to a mere 20 pounds.....20 Lbs. Again...I feel perfect! This is all a very strange dicotomy....Feeling as I do, and having these limitations placed on me. Is my story (as boring as it may be) consistant with anyone else on this forum?

BTW...I have gone from feeling very unlucky about this situation, to realizing how lucky I truly am. Not knowing about this situation could/would truly be disasterous! Thanks for reading

 

[Cris N]

Bill,
Welcome to the site - you've found a great place for the answers to your questions and a large dose of encouragement & support. I can't really help you with the BAV issue - I'm a mitral gal myself but there are loads of BAV folks who will share their stories as they drift in. Your situation does not sound all that unusual based on what I've read here. There are certainly a number of members who feel terrific despite their valve problems. The lifting restriction seems to be fairly common.

I think the one thing that you'll hear, though, is that the aneurysm size for determining surgery is generally 5.0 rather than 5.5. Those folks will be able to give you better information.

I do think that your attitude is a good thing... you are so right that you're lucky to know about your condition so you can watch it rather than being forced to find out about it as you're being rushed into emergency surgery.

There is a tremendous amount of information available here. If you haven't already done so, be sure to check out the Reference section - and, of course the Valve Selection area. Knowledge is power!

In addition to the many people who've had surgeries, there are also a whole bunch in "the waiting room" who can certainly relate to your current situation.

Hope to hear more from you soon.

Cris

 

[mntbiker]

I'm Bill B, one of the new guys and I'm reluctant to post my story.

Is my story (as boring as it may be) consistant with anyone else on this forum?

B

It is very consistent with a large number of the stories here. You would be amazed at how many people feel fine and are told they need surgery. I would wonder about waiting for the aneurysm to reach 5.5cm though, if you go by cleveland clinic they recommend 5.0cm unless there is a BAV present and then they recommend earlier intervention. It is good that they are monitoring you every six months. Things can change quickly (I will allow one of the others to recite the mantra). Welcome to the site and be sure to ask all the questions you need to.

The progression of the regurgitation can take a while, I was at moderate regurg for over 14 years before progressing to severe (now 38YO).

Good luck and welcome.


Oh yeah, lifting - my GP told me no lifting or riding my bike, one cardio said no lifting over 35 pounds and no HR over 140 or BP over 100 diastolic during exercise and the cardio I went with said no restrictions.

 

[Karlynn]

Welcome! And I agree w/ Mtnbiker (David), 5.5 seems past the limit most surgeons set for repairing an aneurysm. 5.0 does seem to be the standard and we know of a few occasions with members here who's aneurysms went before reaching 5.0. Many factors come into play and it is sound advice to monitor your situation on a 6 mo. basis.

We have many BAV members here who know a whole lot more than I, and I'm sure they'll continue to wander in and post.

 

[epstns]

Hi BillB, and welcome to The Waiting Room -- that virtual room in which many of us await our own turns at valve surgery.

I'm in a similar situation to yours (I think). I'm 58, and have known about my heart murmur for about 3 years. I, too, have a "probable" bicuspid valve, but no mention of aneurism so far. My valve condition presents itself as stenosis, the condition in which the valve becomes calcified and the flow through it is restricted. You didn't state whether your valve is stenotic or regurgitant. Regurgitant valves allow blood to flow backward through them when they are supposed to seal off the flow, hence the term regurtitant, or "spitting back."

All that said, with my stenosis at moderate, almost severe, my cardio has me on annual echo's and semi-annual office consults. I don't have any of the "cardinal" symptoms of shortness of breath, angina or fainting, but he has restricted my weight training to 40 lbs. to avoid elevating blood pressure too much. I would imagine that with your known aneurism, that is why they have limited your weights to the lower amount. Cardio exercise, on the other hand, seems to be OK for me. My cardio accepted the fact that I have been a runner for 25+ years, and continues to allow me to jog my 4 miles, 5 days a week -- as long as I keep the pace comfortable. I monitor heart rate and keep speed where I feel OK. At the present, that is about 10 min/mile, with heart rate peaking in the low 160's. Doc says "OK" as he feels that my history of physical activity has prepared me for that rate. If I had not been in good physical condition, he would have limited that, too.

At the present, I'm in the "watching and waiting" mode, as it seems you are, too. That can be frustrating, but you're doing the right thing to keep a close watch on it so that when things begin to change you can react before any damage to your heart is done.

Again, welcome. Keep on doing the right things, and join in often!

 

[athul]

Hi BillB,

I just lived your story. I'm 44 years old. I knew I had a BAV.
Went to a buddys house in October to borrow a generator ( i felt great). After, carrying the generator to my truck and loading it (portable generator), I almost passed out. Spent a half hour on his couch before a dizzy ride home ( 1 mile).
Called my doctor the next day. Went in for an echo. Doctor wanted me to have an angiogram. All tests showed clear artories, moderate to severe regurg., 5.3cm acending aneurysm.
Doctor said time to fix the aneurysm, Oh while we're in there we'll replace the valve. Chose mechanical so I won't have to do this again...hopefully
Waited 6 weeks till surgery last monday 5th. Spent one week in hospital ( actually 5 days)..wow, what a week!!!!!
I worried like hell prior to surgery which turns out to be the worst part.
Surgery morning was an IV, a morphine shot, a shave and lights out till that evening. Next couple of days were a blur with plenty of meds. I actually walked from the ICU to my room after a day. SInce then, 4 days of monitoring and well wishers and back home again.
Now I'm back at home recuperating.
Worst part now is that I can't get a good nights sleep cause I have to sleep on my back. I've already been out with my wife driving ( i now know what a dog likes about riding in the car).
In a couple more weeks I should be back to work feeling better than ever knowing I won't have a "problem" with my heart ( god willing).
You've found a good source of info with this forum.
good luck,
It sounds alot worse that it actually is. Just gotta do it.

andy

 

[TomS]

BillB,
Yup, I was in exactly your position around 2000. Just got it done this year. In my experience, there are three things to wait and watch. First, that anneurysm. I had a 5.2 and spoke with a lot of different docs that gave me varying opinions on what the right point is to operate. Typically 5.0 without a bicuspid valve or AR or AS is when the risk of doing nothing exceeds the risk of surgery. These kinds of risk numbers are available. I had the operation because of the anneurysm, not the valve, because like you, I felt great. I would however go to see another cardiologist on the 20 pound limit. Secondly, get copies of your echo's and see if there are changes taking place in the functioning of your heart. There is a broad medical opinion out there that says that you don't operate to fix a valve that "works", but rather just before it has a negative long term impact on the functioning of the heart. Ask your cardio to explain what changes if any have taken place. Third, without driving yourself nuts, stay attuned to any symptoms. As you likely already know, that is another sign that it may be time to do something about it.
Best of luck.
Tom

 

[ALCapshaw2]

YEP, you sound like a BAV patient to me.

The advice your cardio has given you sounds pretty standard, except the part about it stabilizing and not ever needing surgery. Based on what I've seen from other BAV patients, it's just a matter of time before you WILL need surgery.

With a 4.5 cm aneurism, it's time to start interviewing SURGEONS to find one who has LOTS of EXPERIENCE with BAV patients who also have an Aneurism. Aneurisms and BAV are often a sign of a congenital tissue disease. Our moderator Ross survived a BURST aneurism (at 4.7 cm!).

You should also start looking over the Valve Selection Forum but know that if you need to have your root replaced, this will limit the number of options since not all valves come with the necessary additional material / features you will (probably) need.

You may find it interesting to click on the SEARCH button for keyword BAV to find links to previous discussions of the subject (there have been MANY!).

That should keep you busy for a while and I'm sure you will no longer feel like the "lone ranger" after reading the above.

Please feel free to ask any questions that arise as you learn more about your condition. We have many members who have been where you are.

'AL Capshaw'

 

[BillB]

Hey All......thanks for the great feedback. I have read (and copied) all of your replies, and will try to digest everything. It's all certainly a bit overwhelming. I have requested copies of all my records, and will seek a second opinion.

 

[RCB]

Sorry about your problem

Sorry about your problem

Hey All......thanks for the great feedback. I have read (and copied) all of your replies, and will try to digest everything. It's all certainly a bit overwhelming. I have requested copies of all my records, and will seek a second opinion.

Welcome to another BBer(People whose initials are BB, like my diminutive form ie. Robert to Bob and William to Bill)! If you are seeking a second opinion, you get no better advice then Patrick McCarthy at NW. My seasoned experience would be to seek him out. Just go to their website, get their number and gave them a call- its easy. Good luck Bill

 

[aussigal]

Welcome BillB from another BAVer ...

i am over in Aussi and have been here waiting for a coupla months now...
so pull up a comfy chair and come get to know us all...we are a friendly bunch.

Yes your story does sound familiar...there are many of us here the same/similar...

I am also waiting for the magic number "5"...to fix my 4.8 annie

 

[BillB]

I actually PM'd Karlynn this am regarding Dr. McCarthy (knowing she too is from the Chicago area). I also recall Ross calling him the wizard..so he must be the man! He's the exact guy I was thinking about.. Thanks again all!

 

[Curtsmum]

Hi BillB, my son doesn't have BAV, he was born with AVSD which was repaired at 18 months, he had no symptoms before surgery, he has mitral stenosis he still doesn't have any symptoms and we are waiting for the next surgery. Just want to wish you the best of luck Paula x

 

[BillB]

Good Afternoon. I recieved a phone call minutes ago from Dr. Patrick McCarthy's office (re: my 2nd opinion). The lady I talked to told me that Dr. McCarthy wants to refer me to a Dr. Thomas Gleason, who specializes in aortic root repair, and valve replacement. I really really wanted to meet with McCarthy, but he recruited Dr. Gleason to Northwestern Memorial (Chicago), so he must be good. Damn, I wanted to chat with McCarthy. Anyway, anybody have any experience with Dr. Thomas Gleason?? He did not show up on the VR search engine, (but being computer illiterate, I might have done it wrong!)

 

[aussigal]

If you were referred on by "the MAN" well you will be in very very capable hands I am quite sure...
Ross and others have said how brilliant this dude is and I am sure he would have equally brilliant surgical mates!...


all the best...look forward to hearing more about your story

 

[PJmomrunner]

I remember seeing a press release about Gleason's arrival at Northwestern:

http://www.nmh.org/nmh/mediarelatio...gfMbynknvrkLOlQzNp65In0__?year=2005&number=10

 

[Karlynn]

You should feel very secure with any referral that McCarthy makes for you.