BAV Newbie.

[Joe]

First let me say thank you for everyone on here & the people who set this up. I've been watch the forum for a few weeks now and I can't express in words what comfort it brings me.

I guess this is my post to describe my heart condition.

I'm 28 years old - a daddy to a 19 month old - husband - and Medic on a ambulance for a few years now. Heath care is nothing new to me - being a patient is.

At 14 I was diagnosed with a BAV. I neglected it for 8 years. At 22 I started under a cardiologist care. First echo was routine. The second showed a PDA, and possible coarct. I had a MRI done - in order to avoid radiation - images sucked. So we had to get a CT done.

Because the numerous problems I got referred to Stanford hospital, under the care of Dr. Daniel Murphy.

My first visit there all films were reviewed. The doctor in his fellowship came in explained in great detail the conditions I have & explained in the next month they would be cracking my chest & fixing the coarct via a skin graph & closing the PDA. Then in the future the valve would be done. At the time my wife was 7 months prego - I was working 3 jobs and attending school. (this is may 2010.) He leaves and tells me Dr. Murphy will be able to explain more detail. A hour goes by and I'm in the big oh s. mode. Dr. Murphy the expert comes in and explains why the other doctor was wrong - I don't require repair to my coarct & I'll be fine for a few more years before my BAV is replaced. Good news.

June 2010 my PDA is closed via a cath.

Now up to present day I feel great. I hardly exercise due to work and the baby. But I still am in good shape, eat well & take my meds for hypertension.

I have a ton of questions for people on here. Getting a strait answer from the doctors is impossible. I understand medicine is very very passive - and has to be that way.

There is a constant different opinion - one report says severe AR - the other moderate. I have reports that indicate my LV is dilated - then others say the high side of normal. It's frustrating. Most important a ballpark estimate of when to expect OHS.

With the birth of my son, I find it always in the back of my mind. OHS is going to suck - I accept that. But post OHS will be worth it.

My largest concern is being reliant on western medicine (coumidin) in order to live. If for what ever reason (natural or man made) coumidin is not available - I'm dead. I can't seem to get that out of the back of my mind.

Enough about me, thank you guys/gals for being on here and sharing a part of your life. It helps a lot to calm the storm in my head.

Joe

 

[Bill B]

Hi Joe:

Welcome aboard.

Your experience with variations in echo reports is par for the course. It all depends on who reads it and their skill and areas of interest. Fortunately I only had 3 before surgery, so there wasn't as much confusion. The last one was read by my surgeon directly and he spent an hour going over the films and interpretation with me in his office.

However, I am disappointed to hear about the conflicting opinions you got on your condition in one visit at Stanford. I guess I was lucky that I only dealt with one guy and he was very clear. That said, Stanford is a great place to have your surgery if it comes to that.

I would not worry about Coumadin becoming unavailable. Warfarin (Coumadin) has been on the market for over 55 years and it has never been in short supply. It is derived from a variety of plant sources, not just one source. I know there has been a lot of recent news about increasing drug shortages. Most of the products in short supply are injectables.

Bill (retired pharmacist)

 

[Sarah_Louise]

Hi Joe, welcome to the boards
Sarah xxx

 

[Joe]

Stanford has been great. The doctor doing his fellowship was learning, and went out on a limb. An hour of my stress awaiting Dr. Murphy was well worth the lesson he took from the situation. Its a funny story hindsight.

 

[Bill B]

Actually, I did chuckle too when I read about the fellow versus Murphy. It's quite good that you can laugh it off. Keep us posted on your course. When your BAV needs to be replaced, you will be in good hands at Stanford. You should know AVR surgery is so overwhelmingly safe and successful that there really is no reason for a storm in your head.

 

[drivetopless]

"If for what ever reason (natural or man made) coumidin is not available - I'm dead. I can't seem to get that out of the back of my mind. "

Well, there is no guarantee you would be dead if you stopped taking your coumadin for whatever reason. . .Just because you aren't on coumadin doesn't guarantee a clot will form. And you could take other drugs instead if there was some catastrophe preventing the production of coumadin-- like aspirin/plavix or maybe even some herbal stuff . . . Also, read some of the studies on the ON-X valve where they have done studies in countries that have low therapeutic coumadin compliance and are having decent results.

http://www.onxlti.com/2012/01/on-x-...ival-data-with-the-on-x-valve-at-sts-meeting/


"The recently presented South African study provides a stunning example of the On-X valve’s ability to reduce complications despite adverse anticoagulation compliance. For example, with an approximately 50 percent noncompliant patient group in this study, the thrombosis rate remains 0.2 percent per patient-year comparing favorably to competitive valves with 2.0 percent per patient-year to 6.0 percent per patient-year thrombosis rates in this same patient population.1"

Coumadin is the best preventative maintenance if you end up with a mechanical valve, BUT the valve coatings they are making today are much less likely to form clots which is also a comfort. So, I wouldn't worry too much about that scenario.


Just my two cents.

 

[AmyBL]

Hey Joe! Welcome to the "club." I couldn't agree with you more about the "comfort" that comes from reading other's experiences.

The only idea that came to me as I read your story concerns the fellow - at teaching hospitals, patients have the right to request not to be seen by students. Now I do not know if a fellow is the same as a student and you are being a great sport about it all. Just something to consider, if you are interested.

The coumadin freaks me out, too.

Amy

 

[dick0236]

With the birth of my son, I find it always in the back of my mind. OHS is going to suck - I accept that. But post OHS will be worth it.

My largest concern is being reliant on western medicine (coumidin) in order to live. If for what ever reason (natural or man made) coumidin is not available - I'm dead. I can't seem to get that out of the back of my mind.

Enough about me, thank you guys/gals for being on here and sharing a part of your life. It helps a lot to calm the storm in my head.

Joe

Hi Joe and welcome. Knowledge is the key to successfully living AFTER this kind of surgery. By following a few easy "rules" most live normal lives after the surgery.....even tho it is seldom far from our minds. At least that is my story. My kids were also very young(6 and 8 years old) when I had surgery. I now have GREAT GRAND KIDS....and I am 99+% certain that surgery on my "plumbing" made that possible.

Warfarin(Coumadine) is unlikely to ever be in short supply as it is one of the most widely used drugs, for a variety of reasons, in the world. In addition to the brand name(Coumadin) I have taken the generic(Warfarin) from several labs throughout the world. Patients like you will probalbly see a replacement to warfarin down the road. In my opinion, most warfarin problems are due to mismanagement...by Docs and Patients, and those problems can be minimized by following a few simple rules......that's where forums like VR.org help.

Stick around.

 

[Joe]

Thank you guys for the replys - I've been reading tons on the site. The information on the On-x valve has by far been the most comfort - that study about reduced/or even no coumidin made my day yesterday.

Does anyone think it's possible to push to get the surgery done - before I start having symptoms? Or are they very set into waiting?

 

[Sarah_Louise]

Here in the UK, they like to do surgery before you start getting physical symptoms, but they can tell when your heart needs it iykwim,
My consultant said the fitter a patient is before surgery physically, the better chance at recovery,
Good luck to you!!
Sarah xxx

 

[buffhughes]

Hi Joe: Had AVR 20APR11, went back to work 6 weeks later (part time) and back full time 12 weeks post-op. I searched for a good surgeon who could implant the On-X and ended up in Philadelpia with Dr. Pochettino. I too had BAV and now am almost at my 1 year followup to ensure no aneurysm etc. I am on a fairly small dose of coumadin (2.5mg/5mg every other day) and have been in range most of the time. Coumadin isnt such a big deal - IF you educate yourself and stick to your guns; sometimes even well meaning MD's dont understand anticoag with coumadin.

There is a reluctance to do the surgery too soon and most surgeons will advise you wait until your pressure gradient gets high enough or if you become symptomatic. The use of terms like enlarged/high normal are part of the medical jargon but you should be able to get your questions answered. Good communication between patient and cardiologist are essential; if they wont talk then maybe a second opinion is in order.

Good luck to you and dont fret over OHS; in a young, otherwise healthy individual it should be well tolerated.

 

[Bill B]

Does anyone think it's possible to push to get the surgery done - before I start having symptoms? Or are they very set into waiting?

I would listen to Dr. Murphy. I had a cardiologist who was content to let me sit despite a valve that was shrinking almost by the minute because I had no symptoms. I referred myself to Stanford just to get some information on my eventual surgical options. The surgeon I chose was adament that I needed surgery within the next 4-5 months. 3 Months later I had it done and that was clearly not too early. Since a good share of people with BAV never develop symptoms or require surgery, it's a balancing act to determine when it's time to go. In my case, my heart was very well-compensated, but working so hard to overcome the stenosis that my lack of symptoms was baffling and it finally became clear that I was on a ragged edge that could give way at any time rather suddenly.