It's all the Doctor's Fault

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Chrish

I fell on this site as part of a panicked response to rationalize what I know will have to happen very soon. I'm grateful for having located you all and I have a feeling I'll be posting and venting more as the "event" draws closer.

I'm a 35 y/o male with a bicuspid aortic valve (BAV) with moderate regurg. I've know about this since I was 21 and have monitored it for the past 15 years. The Doctor's appointments were always the same.. the echo revealed no major change in root dilation and thus, "come back in two years" Well, I came back in two+ years just a few weeks ago and was startled to get a call from my cardio saying he wants me to have a heart cath. I tried to get from him whether the test was an immediate precursor to an actual AVR or just another test to see how much longer I have. He was vague and evasive in his answers. I'm going forward with the cath, but also getting a second opinion.

As it always seems to happen, I feel fine until I have to meet with the docs for my regular checkups. However, since this last visit, and since he's made overtures toward the "event" I now "feel" like something is wrong. IT'S ALL THE DOCTOR's FAULT!!!

Now with the heart cath pending scheduling, I feel extremely anxious and I can hear every little sound my heart makes. To put it quite simply, I'm freaked out. At 21, I knew this time would come.. but now with two little boys and being on the go all the time, I just want to curl up in a corner until the bad man goes away.

I know most if not all of you have experienced feelings like this and, as a result, I'm not saying anything new. But --DAMN"T I'm not ready for this and I'm having a difficult time rationalizing what it is I'm feeling, both physically and mentally.

Well, that's my rant. Thanks for letting me post.

regards.

Chris
 
Chris - I know how you are feeling. I don't think any time will be a good time. At least that is my thoughts now. I have known only for the past 4 years that this will be coming and in July of this year was told to be looking at surgery in the near future. I had a TEE and Cardiac Cath done last month just to verify the change they saw in my Echo in July and also to decide if it was time to get fixed.:eek: Well, it is up to me to decide when.

Hopefully you will get more answers when you get this next step down. Just take it day by day for now until you have more information on what is going on. If you can't wait till the Cath, call your Cardio and just make him tell you what you want to know!

Good Luck and hang in there!
 
Chris,
Here's a quick reply, but my immediate thought is that I would not agree to have the heart cath without more information forthcoming about why the cardio feels it's time to do one.
Have you had regular echocardiograms run? If so, I'd want to know the results of my last one and then ask what readings make him want to do the cath.
Mary
 
Mary,

Thanks for the recommendation. The cardio indicated that the echo indicates a mild degeneration in the LV and the heart cath will reveal how severe that degeneration is and whether or not I need to go sooner rather than later. Feeling very anxious and not having the second opinion to rely on just yet, I'm feeling unsure and, thus, took the route of being cautious in agreeing to the cath.

Chris
 
Welcome to the site. It's so hard to be faced with a situation which you're not sure about and which might involve something like surgery.

Your doctor is doing what is necessary to try to diagnose whatever he saw that might have been abnormal in your current tests. He may not know at this point what will show up in a heart cath, hence the evasive answers. The cath is more discerning about the finer points of what may be ailing you. A lot of times, it will be in your favor, and may be just a blip on the echo, or technician problems, machine problems, etc. The a cath will figure it out. Echoes are notorious in their inaccuracies. They are used the most because they are non-invasive and less prone to complications.

Let me give you a "for instance", my husband, who has had multiple thoracic surgeries always has echoes which are "technically difficult" and most of the time, they can't see ANY of his valves due to scar tissue and other shadows.

So, please just try to relax until things get sorted out and you and your doctor have more information on which direction things are going.

Your doctor is not to blame for health problems, he's there to try to diagnose them. It doesn't sound like any error on his part.

We're here to help you, so vent away. It's scary stuff.:)
 
Chrish,

Welcome to your home away from home. You will find lots of information here and all the support anyone could need. Sounds to me like you are getting close to a surgery date. It is a blow. I remember when my cardio walked in after my echo and said it's time. It was like getting kicked in the gut. Once the shock wore off there was nothing left to do but step up to the plate and get it over with.

You will get advice from one end of the spectrum to the other. The only thing you can really do is to find a doctor and surgeon that you feel comfprtable with and trust them. Remember we are not doctors, just folks that have been through it or are waiting to do so.

On a personal note my fear although real was for the most part unfounded. It was all so much easier than I expected. The pain was nothing like I thought it would be and if had to do it again I would walk in and say "get er done".

I wish you the best. Again welcome.

Cooker
 
Welcome:D
I felt the same way when they told me that the echo was showing my valve was tighting up and they told me I had to get a cath. It straight freaked me out. I have had a BAV since birth and known all along I would have to have surgery but did not think I would have it until I was older. I was told when I was 18 that I had to have the surgery right away from my cardiologist. I was scared then I was not married no kids I felt lost and I did get a second opinion and they said I was not ready and so I waited. Since then I have had two children and now at 30 it finally came time. I still was not ready but my body was. With the littlest excertion I was getting chest tighting so I started listening to my body. I will tell you one thing talking to the people on this website changed my fear to peace of mind. And well now I am 5 weeks out of OHS and I feel good. Better than before surgery. Anyways I agree I would get the 2nd opinion and then begin preparing. Glad you found us... Good luck :)
 
Chrish said:
Mary,

Thanks for the recommendation. The cardio indicated that the echo indicates a mild degeneration in the LV and the heart cath will reveal how severe that degeneration is and whether or not I need to go sooner rather than later. Feeling very anxious and not having the second opinion to rely on just yet, I'm feeling unsure and, thus, took the route of being cautious in agreeing to the cath.

Chris
Click to expand...

Chris,
If he thinks there might be degeneration in the LV, then the heart cath is a reasonable next step.
When is it scheduled for? Please let us know how when you receive the results.And welcome to VR!:) ]
WELCOME.gif
 
Chris, you are at just about the same time and life circumstances that I was when I had my mitral valve replace. I was 32, had 2 young children and my life was very busy. The difference is that I had so many symptoms for several years that I was basically begging to get the surgery done. But I was still scared at what it would mean for the future of my family and me. The good news is that almost 15 years later (10/24) life is terrific, my kids are raised. I just became a grandma and we've had a very full life. We've traveled to Europe twice as a family and I look forward to more trips there, but mostly to Kansas City where my new granddaughter is.:)

Try to take it one step at a time. A heart cath is a scary thing to think about, but rest assured that it is done 100's of times a day in this country. It is a good diagnostic tool that will give your doctor a much more clear picture of just what is up with your heart. As others have stated, the echo is nice in that it is non-invasive, but it has it's flaws in giving clear pictures.

Best wishes, and welcome to the family.:D
 
Chris,

Welcome to VR.com. So sorry that you are feeling so overwhelmed at the moment but I don't think you are feeling any different than anyone else would feel in your situation so don't beat yourself up over it. No matter how long you knew something needed to be be done "someday" I'm sure it is like having the rug pulled out from under you right nowand there is no doubt about it that it is a downright scary time for you now. I've only been in the "waiting room" for 2 years and I can sometimes do a very good job of forgetting about my little leaky mitral valve and then there are other times - usually right before my cardio appointment- that I jut can't turn off my brain with worry. It would seem to me that having the cath is going to give a better picture of what is happening with your heart. Your idea of getting a second opinion sounds like the right route to follow. Be sure to get copies of all your prior echos and your cath report to bring with you.

Do take care of yourself! and try not to worry too much - I know that is such a cliche and much easier said than done but I see from your profile that you do have 2 very good reasons to do so - your sons!

All the best!
Susie
 
Keep Yer Chin Up

Keep Yer Chin Up

Chris, your situation sounds very similar to mine... I have a congenitally bicuspid aortic valve. I've never had symptoms until recently, when I would get a bit short of breath on long walks or going up stairs. I also could no longer run, which I loved to do.

Once I was diagnosed with needing surgery, about 6 months ago, I also started to feel all sorts of symptoms in my chest that I'd never felt before. I mentioned it to my cardio and a surgeon, and both chalked it up to my heightened sense of awareness of my heart. I doubted this at first, but, in the last months I've decided they were right... My heart still feels the same... I am symptomatic in that I get short of breath on long walks or going up stairs, but other than that, all the reasons I need surgery are tucked right into that valve, and apparent on the echo and cath (stenosis and regurgitation) and on the chest CT (dilatated ascending aorta).

I obtained the actual studies from my cardio's office and shared them with several surgeons. All say it's time.

I understand your nervosness, but you're going to be fine... and both you and I will doubtless be more healthy a week after surgery than the day before.

I think you and I are exchaning e-mails... keep 'em coming as often as you like, keep your chin up, and make yourself at home in this wonderful community.
 
Welcome Chrish,
Boy do I understand where you are coming from. When I had my stress test last month and the results showed that my valve has gotten worse I think I cried for a week straight. I was so scared my head was spinning. Then I found this place. Someone told me to get a copy of all of my records and I did. After that I started to learn about what was happening to me, and where this may lead. For me knowledge was power. The more I came to understand what was going on the better I felt about it. Ask questions, be involved, and know that you are not alone! There is a lot of good information here and a lot of support. Good luck to you.

Steph
 
Welcome! Glad to have you here. I know it comes a bit of shock when you recieve the news or lack of. I think your Card is doing the right thing, he is not at fault. That's why we have Echos every year or two to keep up with the disease. Obviously, he saw something he didn't like or wasn't sure of. I think I would trust my Dr. on something like this.
 
Chrish -
You have found the right place!! I know how you are feeling as well. I had no indication of a problem at all though - no BAV. I just started having symptoms and the docs found a leaky valve. I am 34 with 4 kids. I was so overwhelmed at first - but I have found information to be the best medicine for all that anxiety. Most of your questions can be answered by these wonderful people here - and if they can't answer them, they will certainly point you in the right direction.
That cath, while unsettling, will give your doctors the information they need to care for you properly. So, take a deep breath, and read, and ask....You will be fine - we are all here to help!!!!
 
Hi Chris,

You need to stop and think what your life would be like in 5 years or so WITHOUT the surgery. This is basically giving you a second chance at living a long and normal life. It's perfectly normal to be scared, but just wait till those boys are driving, and you will look back at your OHS, and wonder what you were so scared about. Waiting to hear that car in the driveway is WAY scarier than this:)

My cath. was nothing. Slept through it all and then you're up and about. My cardio. put a "cork" (for lack of a better word) at the incision site, so I was able to get up and leave after about a half hour. Normally, without this method, you have to lie flat with a sandbag on your leg for several hours.

Facing your own immortality is certainly a stressful time. But you have to remember that this is so routine at the hospitals. Also, remember that you were LUCKY enough to have something that can be fixed, and then life goes on. There are thousands of people out there that would give anything to be in your shoes.
 
Fear Not.......

Fear Not.......

The cath is really nothing. I didn't feel it in the groin area, and I certainly didn't feel it in my heart. I was able to watch it on a monitor as we did it. My card gave me a little "babble juice" to loosen me up, but I was wide awake when we did it. We used a "colloid" absorbable plug in the artery, and I had to stay prone for about an hour. After that, my card gave us a little talk about the results, and I took my sister and her husband (driver and support personnel) out to lunch.

Apprehensiveness is natural and normal for us first timers. My card told me, that if he had to have it done, he wouldn't take anything to relax.

I was a little stiff in the groin for about three days, and then ther was just a little lump there for about a month.


Tom in Cincinnati

Surgery this Friday!
Get 'er done!
 
It's all the Doctor's Fault a little "tongue in cheek", Chris??? I didn't feel sick until the doctor told me I was, so now I feel sick and it's his fault!!??:) :) :) :) :)

Welcome to our comfort zone Chris. There is a wealth of information to be found in this forum. And there is comfort in numbers. We do understand your anxiety being a young father.

You'll be fine and come through this just as hundreds of others have. There are a lot of praying folks here who will follow you and hold your hand!
 
Chris, let me say that you won't beleive the change you will feel if you spend the next two weeks on this site.

I'm 36, 2kids and had almost the same news as you 3 weeks ago. Initially i was upset (but strangely more at the thought of not seeing the kids and them missing out on things than myself) but that passed in hours and was replaced with a positive feeling.

I felt sorry for my cardio as he had initially said all was ok and then called me back for a CT which is when he said i needed an aorta replacement and possible valve swap.

I had the angiogram (cath) 6 days ago and it was a doddle, my heart rate and pulse never budged and i watched it on TV...i also had the new collagen plug thing which meant i was out and about in a couple of hours. I did have the following day off work but this was more because i felt if i pushed it i may pull my groin but this feeling was more because it was the second one of these i'd had (had one at 18 to stretch valve) so there was a little bit of scar tissue to get through and a little bit of mental reluctance due to groin pulls in the past (sport related).

I'm so at peace with the whole process now its weird, look at it this way, if they wern't looking for it and never found it the first thing you'd know about it would be lying on the ground clutching your chest so the current situation is mutch better than the alternative.

Best of luck, milk the sympathy for a couple of days, brecky in bed etc...:p
 
Just wanting to welcome you .............

Just wanting to welcome you .............

and second the cath idea. A TEE is a little less invasive, but it sounds like your doc wants to check some other things out as well, and a cath is the best way to get the whole picture. My five year old has had two. If she can do it, so can you. The other good thing about a cath is if you want a second surgical opinion, you can easily get one with your cath pictures(films) and report.

Keep us posted. Hugs. J.
 
Chris-
As you mentioned yourself, most of us have gone through a similar set of emotions. I personally went from having absolutely no idea that I had any heart issue at all to an operating table in about six months. All at the ripe ol' age of 28. I remember that after my diagnosis and finding out that I needed surgery, I could think of absolutely nothing else. Every little twinge of pain or strange heartbeat scared the hell out of me. The worst part is that I probably had the exact same things happen my entire life, and probably 90% had nothing to do with my heart valve at all, but saying those things don't do a single thing to make you feel better about it. It got so bad that I actually looked forward to surgery so that at least I would have the ticking time bomb in my chest fixed and I could get on with my life.

I know that it's frustrating to get evasive answers from your Cardio, but there is definitely a positive side. This is only speculation, but I don't think it's unreasonable to assume that he's not giving you clear-cut answers because he doesn't have them yet. He can't tell you whether or not you will need surgery in the near future until the Cath is done, so he probably doesn't want to get your tell you that you either do or do not need surgery at this time until he has all the information. That's just my best guess.

Anyways, I hope your Cardio is just being overly cautious and the cath confirms that nothing has changed and you can get on with your life. If the cath shows something else, just know that the path in front of you is well-travelled and we're always around if you have any questions. Be well. :)

Mike
 
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