Hello, I'm new and I'm scared!

[RvUsa]

Hi, my name is John, and I found you guys last night! I hope you don't mind me asking you a few questions, but you seemed like a great group of people with lots of useful info to pass along.

To start off, let me tell you a little about myself.... My little adventure started about 2 weeks ago, I had an echocardiogram as part of my preop testing for WLS (weight loss surgery), my wls doc didn't recommend it, but my PCP and I talked about getting one because I have had a mitral murmur since birth. He figured we would just get the echo to make sure all was well, and then go on with the rest of the wls pre-op checklist. Well I get a rather disturbing message on my answering machine last Thursday night.... "John, we really need to talk about the results, call me asap Fri", well that will just ruin you day won't it? So bright and early Fri morning I call his office and he isn't there, lol, but a nurse tells me, the results show an aneurysm and stenosis, we need to get you a CT angio asap. Well, my wife who I should have told you is a ICU RN, isn't exactly happy with that explanation, so we go to the office to get the copy of the report. I watch her as she reads it, and she just goes white as a ghost and kinda looks shocked, I am thinking this can't be good, well it says that I have a 5.9cm ascending AA, and a bicuspid aortic valve with moderate stenosis. Plus some other stuff I can't exactly remember, like enlarged aortic opening, and lots of mmhg numbers that looked ridiculously high! ( my wife has since hidden the report from me so I can't research it more and make myself worry even more than I already am!!!)

So thursday, I finally had my CT angio, and got to see the PCP, I was hoping I would get the results before the weekend, and it would all be a mistake and I was fine... but NOOOOO, here I am waiting some more. The PCP, said, "I'm no cardio guy, I am just a FP, but I can't see you not having surery", so now I am freaked out and pretty dang scared, and I don't see the Cardio guy till wednesday.

Anybody have any thing to tell me to make me feel better or at least to let me know what you think is gonna happen to me? I think I have read almost every thread in here, and almost every thing I could find on google.


Sorry, this is a book, and I might not even be in the right place. I will stop for now and see if anyone can direct me to where I should be. Thanks in advance.


FYI, I am 40yrs old, married for 10 yrs this past jan, and have the coolest little 6 yr old son who is my life! In case you hadn't figured it out, I'm not exactly a skinny guy either, lol lets just say 400lbs plus and 6'8" tall!!!

 

[Eva]

Hi John,

Despite the harshness of the news' effect, I tell you that you should count your blessings...you're lucky to have found out this now before more damage took place.

So, welcome aboard, and please note that we all were in your shoes with fears of the uncertainties! Rest assured that all will be well later...just take a deep breath and meet with your cardio and keep us posted about his recommendation...post your newer questions. Take it one step at a time. Take a deep breath and know you are not alone!

Your heart surgery should be priority, when decided, and hope that you may be able to lose weight on your own afterwards with exercise which you may not have been able to tolerate for a while!

Good luck

 

[Nupur]

Hello, John. Welcome! Sorry for the reason you found us, but you'll be glad you did. I had the shocking diagnosis last summer myself, at age 41. This community of people is wonderful. Stick around and you'll see many folks get through this and you'll feel brave enough to face OHS.

I have a 6 year old too! He is in K, and yes he is the center of our lives. My husband and I can't even go on a date without him : )

You will be fine! Although this certainly puts your weight loss surgery on the back burner, huh?

 

[JimL]

Welcome, John, you're definitely in the right place here! So many of the details you provide sound so very familiar. You may not have heard of this kind of surgery before, but it is fairly common, and the surgeons are experienced; it will be your first, but they've practiced on the rest of us, and got it right.
Just to compare details, I am 6'4", I was 46 when I had surgery, I had an aortic aneurysm, bicuspid aortic valve, and they did a little mitral repair while they were at it.
I think I would tend to take it easy, at least until the appointment on Wednesday, you know, no skydiving or that sort of thing. The height may be tied in to the valve problems; many here are on the tall side. I don't know about the weight, but I think there are one or two here who know something about that.
Stick around, and keep us informed, if you will.

 

[Freddie]

Hi John and welcome to the family. Be thankful that you found this site before surgery - wish I had.
I can relate how this comes to a shock to both to you and your wife, so are not alone.
I don't want to stop you from asking questions (oh heavens no), but if you don't get the answer your looking for, snoop around this site by using the "search" button.

 

[Cooker]

Welcome to the zoo .....

 

[tobagotwo]

Hi, John. It's never easy to get this type of news. We were all scared at one point or more, and many of us had years to ponder it, knowing surgery was coming some day, and watching our health and strength deteriorate as the unknown day approached. However, you should be aware that there have been a lot of improvements over the years to valve surgery and to valves themselves, and there is now a large pool of surgeons to choose from that have excellent, current experience with this type of surgery. It's much better than it was years ago, although it's not "no big deal," as some (who are not undergoing it) may tell you.

One thing you will need to determine is whether you want to be in control of this, or just ride it out. If your greatest fear is of the unknown, then you should have your wife relinquish the test reports you were given, or request another copy from the doctors involved. If you wish to make the decisions or understand why they are being made, you can't do that without base information about your condition. You are 40 years old, and federal law (HIPAA) states that no one, including your spouse or doctor, has the right to divert or exclude you from any of your own medical information past the age of 18. (Please note: that is not intended to start a fight between you and your wife. Now is not the time.)

If you've got moderate aortic stenosis, the mmHG measurements are not really as high as you might think without a frame of reference. Those refer to the pressure gradient of the blood going through the valve at peak and mean levels. It's not an immediate concern, although your weight is of course a complicating factor, as it increases the workload on your heart.

I'm sorry to say, but you're going to go through this in kind of a rush. A 5.9cm aneurysm needs to be taken care of right away. While they're in there, they should also replace your valve. As you show signs of weakened (myxomatous) tissue (such as the aneurysm in conjunction with a bicuspid aortic valve and a mitral murmur that suggests mitral prolapse - which may not actually be a problem itself), you want to limit avoidable future surgeries.

You should be in the care of a surgeon who has operated on a fair number of people who have connective tissue problems. They should be checking the rest of your aorta for enlarged areas as well as the ascending aorta. Be sure your surgeon is well qualified in this area (patients with connective tissue problems). If he is not, get a second opinion and a different surgeon.

Your weight loss surgery is off the table, likely for at least a year, if not permanently. It's unlikely that there is time right now to wait for you to lose weight from conventional means, and weight loss surgery creates a health crisis of its own that you cannot afford to go through right now.

As you are a prime candidate for a mechanical valve, you will likely be on AntiCoagulation Therapy, which will make it more difficult in future to talk some surgeons into working on you. There is a wealth of information about ACT here, and most find that it doesn't affect their lifestyle very much at all.

Again, it's normal that you're afraid (all right - panicked). We all have been about this. But it will not be as bad as you fear, and it will go much more quickly and easily than you think.

Best wishes,

 

[RvUsa]

Thank You ALL!!! What a warm FAST welcome. Trust me I have been reading all the post I can find I have no idea what the doc is gonna say, for all I know, I may be fine, but I am sure you all know, the only thing you can think about at this stage is the "WORST CASE".

I actually am pretty "fluent" in boards, I own one that deals with camping, but my place is all about fun and family. This place is a lot more important and a lot less trivial than mine

In all your "expert" opinions, do you think a 5.9cm AA and a moderately stenotic valve would be a probable surgery like my PCP said, or am I gonna have to wait and see?

If there anything I should ask my surgeon on weds? Any tips to make this a little less stressful?


OOOPS, I am slow, Bob answered some of my questions while I was posting, Thansk

Thanks guys, I have a feeling I will be hanging out here a lot in the next few weeks/months.

John

 

[lilteach3234]

Hi John,

Welcome aboard! My name is Trina and I am 11 days post op. My story is similar to yours. I have always been told I had a little heart murmer due to being a 2 lb. baby 49 years ago. They discovered my bi-cuspid aortic valve when I went in for a sore throat one day...ended up leaving to go over to hospital for an echocardiogram. My discovery was in 2001 and we watched it each year. Two weeks ago I had what's called a TGA where I had about a 6 hour amnesia episode. Thank God for this because it put me in the hospital. My echo howe severe stenosis. My doctor told my husband after surgery that I am blessed to be alive and that my request for immediate surgery was the best thing that could have happened.

You've come to the right place. This board is filled with wonderful people and it's nice talking to people that can say, "I know how you feel." This is especially important when you are fearful.

My suggestions as someone just coming out of this is to look at the posts on here and read. If you have questions or just need to vent come here and do it with us.

I'm glad to be on the other side of the mountain.....even with the soreness and downtime. You too will be on the other side eventually.

Glad you are part of our family.

 

[marie]

Welcome although I can not answer your questions I can tell you being scared is normal. It sounds like you're looking at surgery sooner rather than later.

I had WLS almost six years ago and I have my aortic valve replaced 14 months ago. I was 66 when I had my valve replaced and I did fine and I'm sure you will too.

Earline

 

[TakeStock]

Welcome, John. I'm 43 and up until recently had never had any heart issues, not even a murmur. Then in November I came down, without knowing, endocarditis and before you know it my cardiologist, on our first meeting, was telling me I would soon need surgery. So I know what the shock is like. My surgery is scheduled for the end of the month (March 31) but after a great deal of research I've come to realize OHS is not nearly as scary as it first sounds. It won't be fun -- surgery never is -- but the pain is manageable for most and if you take it slow, you'll be fine. Just think of it as a nice long, relaxing vacation.

 

[Karlynn]

John, a 5.9 AA is serious and it needs to be taken care of as soon as possible. No heavy lifting until this is done. If you start to feel pain or pressure, get yourself to an ER as soon as possible. You are really lucky you decided to do the WLS, because the pre-op testing is saving your life. Your guardian angel hasn't been sleeping on the job!

I would ask for a recommendation for the best cardiac surgeon in your area. If you have a heart hospital near you, have your PCP get you hooked up. Tobagotwo gave you good advice on getting a cardio that deals with connective tissue disorders.

I know this is scaring the daylights out of you. But use that to be proactive and your own tough health care advocate. Make sure that you deal with physicians that know what they're talking about. If you see hesitation from them in getting your aneurysm taken care of, that would tell me that they aren't familiar with many aortic aneurysms.

God bless. Hang out here. Let us know how things proceed this week.

 

[Garth51]

Hi John and welcome to V.R. ! I,m no expert but I had Aortic valve replacement and a AA repair 3 yrs ago.The hardest thing for me was being on a heart surgery waiting list for 6 months,the waiting was very difficult.Like you ,I had a bicuspid valve but mine was severely stenotic.My Aortic Anyerism was smaller than yours at 5.0 cm. Like Tobogatwo stated,I believe that your OHS will be attended to much Quicker due to the size of your AA. John ,I really think this could be a blessing to get it done and fixed quickly and not have to wait a long time!These surgeries are a common every day thing with very high success rates.They take excellent care of you in the hospital and have excellent pain killers.I was 51 when I had my OHS and I'm still here and you will be too.Best Wishes
Garth

 

[Eva]

.........

If there anything I should ask my surgeon on weds? Any tips to make this a little less stressful?.........

Questions that come to my mind:

1. how soon surgery will be
2. References to good surgeons, good hospitals
3. If there is any medication you need to start taking; or to stop taking in
case they affect your heart
4. What to avoid doing (other than the obvious heavy lifting)
5. what kind of valves he recommends and why one vs others; advantages
and disadvantages of each valves keeping you in mind not in general

to make it less stressful: Remember always that this is a routine surgery nowadays and look forward and keep focussing on the healthier new you after the surgery


Good luck and stay around

 

[Buffy41]

Hi john, welcome to the avr family.
In January I had surgery to replace my aorta valve and fix an aneurysm (mine was at 5.5 when they found it). It is hard waiting to have surgery. We're all here for you. Don't be afraid to ask questions, someone here will know the answers. I'm glad they found your aneurysm in time.Try to relax.

 

[ALCapshaw2]

Welcome Aboard John!

The REALLY GOOD NEWS is that they found your Aortic Aneurism BEFORE it ruptured. It WILL need to be fixed.

What your wife doesn't want you to know is that the survival rate for ruptured aneurisms isn't very high so do NOT do anything stressful (i.e. do not lift anything heavier than a half gallon of milk) until after you 'get fixed'.

Your Next Step will be to find a CardioThoracic Surgeon who has Extensive Experience doing Surgery of the Aorta. This is a Big Step beyond your neighborhood ByPass Surgeon who does a Valve Replacement every once in a while. You will probably want to go to a MAJOR Heart Hospital. CHOPS in Phily? is frequently mentioned here.

If you are in Western Pa, The Cleveland Clinic is the #1 Rated Heart Hospital and has Many World Class Surgeons. With an experienced surgeon, your risks are in the same range (very LOW) as an 'ordinary' valve replacement.

You may want to read everything in the Bicuspid Aortic Valve and Connective Tissue Disorder Forum to learn about your condition and why it is important to have surgery *soon* with a surgeon skilled in this area.

Consider yourself VERY FORTUNATE that your condition was discovered in time to Get it Fixed in a non-emergent manner.

'AL Capshaw'

 

[Marguerite53]

You've had some great answers already. I just want to welcome you to our wonderful community.

Perhaps if your wife were to log on and see how matter-of-fact we can be about something so completely mind-blowing as open heart surgery, she would be calmed, and relinquish your echo report to you!!

This will be stressful for her, possibly even more than for you! But she needs to be part of the conversation.... not in charge of it!

You are lucky. You will be able to get that AA taken care of before it takes care of YOU! Yes, this is all daunting information, but many of us have had similar experiences and made it through peachy keen! Finding the best surgeon for your particular set of circumstances is key. Then you can trust them to do the work that needs to be done and get you on the road to recovery.

Best wishes.

Marguerite

 

[Freddie]

One thing that hasn't been mentioned as of yet John, and that is to get copies of all of the tests you get done. (I know your wife has already hid one on you, think hard and I'm sure you will be able to find it.)

There are members here that will be able to help understand what those numbers mean. Its just a good thing for you to have.

 

[AgilityDog]

John, I'm so happy you found us! None of the posts above seem to have mentioned the "sticky notes" at the top of each topic column, so make sure you read those in BAV, and valve selection, and presurgery, plus in anti-coagulation and self-monitoring sections. Just in case you haven't found them already.

I got diagnosed with a-fib 8/24/06 after 5 months of SOB after a bad case of bronchitis, and was supposed to present for tests on 8/28. I didn't make it until then. I was in class IV congestive heart failure. FYI, class V is Probate!
On 8/25 I had a tia and wound up in hospital, for tests for a week, where they found my MVP. I had surgery 9/5/06. It is overwhelming to be told you're having heart surgery, especially on short notice. But we come out of it better than we were before, god willing.

I started a diet pre-surgery (I couldn't breathe, and being 40 lbs overweight did not help. I'm sure your weight issues doesn't help your heart, either, but you know that, that's why you were going for WLS). I've lost those 40 lbs, and kept them off. I hope you find once your heart is fixed you are healthy enough to get some weight off, even before your WLS. You may be having symptoms, you just may attribute them to weight.

Read up on valve selection-tissue v. mechanical, v. what kind of mechanical. I'm eventually going to have AVR in addition to my MVR, with another mechanical valve, and I have decided on the On-X valve, to reduce turbulence and possibly reduce blood cell damage, as well as minimize the ticking. I don't hear my St. Jude's mitral valve much, but I wouldn't mind avoiding stereo!

 

[SMS]

Hi John, The best advice I can give as a non health professional is to just try to relax and stay off the internet so much! I am looking at the possibility of Mitral valve repair/replacement myself, and all the info that's out there can scare the stuffing out of you.

When you see the Doc on Wed, I am sure your wife will accompany you, and will help get everything straightened out. If the situation warrants it, certainly you will be in front of a surgeon very quickly, and the problem will be repaired.
You are still young and strong, so recovery should be easier.

I'm sorry I can't offer any insight into your specific condition, Good Luck!

Steve