living with a monkey on my back

[Nupur]

Just want to say hi. We've all been there. I had numerous panic attacks after being diagnosed in 2008. It gets better with time. As you learn more about it, you will learn to live with this, and lead an (almost) normal life. This is a very natural process, if you hadn't freaked out, that would be weird. Give yourself time to calm down. You will be fine : ) Folks here are wonderful!!

 

[Dina]

Sometimes its best to get it over with. I waited too long and now have to live with permanent damage to my heart.
My surgeon and cardio saw me as young and healthy and allowed me to wait too long...I now have new doctors but they can't totally fix heart failure. If your regurg is severe,your heart is overworking itself. It can handle this large workload for only a limited time before it begins to cause permanent harm. I waited about 10 years in severe
tricuspid regurg...way too long.
Good wishes- Dina

 

[ARGreenMN]

Focus on how lucky you (and we) are

Focus on how lucky you (and we) are

Just had my surgery last week, so am now a veteran of this lol. Lots have already told their stories, and I'll add mine too. But first, I say focus on the day & age we live in and how lucky we are. If we all lived 50 years ago instead of now, it's scary to think how many of us in this forum would still be around by now. But since we live now instead, we are all still here, and doing well. Today's medicine is simply amazing. We all know how scary this condition is, but as someone said, the best thing to do is to just keep busy and not let it affect your life until it's time.

So here's my story - don't know how similar or different it is to yours, but might be parts you can relate to. I've known since I was 12 (I'm 49 now) that I'd have to have the surgery sometime in my 30s, 40s, 50s or 60s. While I always had symptoms (not as much stamina as I should have had, skipped beats) it was really only in the last 5 years or so that I really started worrying about it. They thought it was time for me to start having annual echo's. About 2 years ago I had my first real scary thing happen (almost collapsed on baseketball court). Then, about a year ago the same thing happened again. Of course, it took me almost another year to go in for my next echo - trying to delay it as long as I could - 'cause I figured it was time. But finally decided the symptoms were getting too much to ignore (shortness of breath, back pain and chest pain, light-headedness and more missed beats). So went in for echo in March, and not surprisingly, he figured it was time too - but had me go in for an angiogram a few wks later to confirm because the echo still wasn't showing much difference (never showed much difference from year to year). The angio confirmed it was time and the rest is history (surgery last week and doing great). So don't be scared. Since you can't control when it's time, just focus on other things until then. And when it is time, you'll be fine - today's medicine is simply amazing!

 

[Broken Hearted]

Thank you, thank you for the upbeat message. Those of us with surgery in the near future are very grateful...

 

[Luana]

AR says it well and he's not even totally awake from the anesthesia. ;-) I don't think I can say enough about how lucky I've been with this whole process.

I had rheumatic fever as a kid, and pretty much ever since I can remember, especially as a young adult, I've known that I might need to have a valve replaced when I got older. Well, I got older and needed to have the aortic valve replaced. I really never thought much about it until I started experiencing symptoms, lots of fatigue and shortness of breath, and I knew that's what it was. While I can say the process is not quite a romp in the park, I am very grateful to have had something that could be fixed. Of course, I wasn't too thrilled about how it had to be fixed, but fixed is really pretty darn incredibly wonderful to me.

 

[Elcarim]

I was born with a bicuspid aortic valve as well. Diagnosed at 18yo, first replacement at 22yo. They gave me a tissue valve first off so I could have kids if I wanted. Five years later, with a 2yo and a newborn (6wo) I went for a follow up. Tissue valve was almost completely worn out. I was told to wean my baby and book in for surgery. Callum was 3 months old when I had that operation.

Let me tell you, it was an incredibly traumatic time for me! I also ended up pacemaker-dependent due to complications. I am now 32yo, have a mech valve and I'm on ACT, but from day to day I am fine, well, in no pain, and to look at me you would not think I had any physical problems at all. I even still ride horses.

In most cases they say you will get about 10-15 years from a tissue valve, but mine did not last. These things happen. As you can see from our responses, the answer to your question of 'how long?' is a bit 'how long is a piece of string?'. It really does depend. But I will echo what others have said about having a medical team who can tell you when the best time is for your health and your body. There is never really a 'good' time for OHS and AVR, but there is a 'best' time. I know that ticking timebomb feeling can be scary, and I still get anxious around my annual reviews, but you will learn to live with it, and we will help you deal with it as best we can. Perhaps getting professional counseling might help too.

 

[Jkm7]

You call it monkey on your back and I called it black cloud over my head.
Yes...... it's hard living with that reality but most of us here have done just that.
I had my 'down moments' and dreaded the echos as each time I knew it could indicate 'my time had come'.
Finally, that time came and I did what I had to do and went ahead with the surgery as do (most) of us..... and you will, too, and we'll help you through it.

Keep thinking about how lucky we are we live in a time when our broken hearts can be mended. How many who came before us did not have that option.
You just do what you have to do for that sweet baby of yours AND for yourself.

 

[karen14]

Hi youngmom,
I, too, was a young mother when I was diagnosed. I guess I was about age 27. Anyway, this internist diagnosed me then with BAV and Marfan's Syndrome. He said that I probably wouldn't need it replaced until around age 45. He was exactly right! At that exact age I was told I needed to have the surgery immediately.

My point is that you can relax as it takes time for the valve to get to the point of needing this surgery. My son had grown to an adult age (while only 18), but wasn't a small child anymore when I had my surgery. Plus, the doctor's wanted to put it off due to his young age, etc.

I was very active all those years, right up until the the last couple of years before surgery. The only thing that happened out of the norm was that I briefly passed out racing my son back from taking the garbage down to the road one time. This was the point where I just realized I had to take care, with no other problems in any other areas.

Everything will all work out the way it is supposed to. And try not to worry. I know that's easier said than done, but this thing cannot be controlled by worry. That will only make you uncomfortable. Acceptance is the key. So know you're not alone in this, take a deep breathe and live your life.
Luv, ~Karen

 

[fromlu]

I was told throughout my life by random doctors that they heard a heart murmur. My dad has one (he is still alive at 91) and no doctor seemed concerned so should I have been?

In January I started feeling funny. My heart felt like it was beating out of my chest, I felt a burning feeling when I moved around and light headedness. ( if there is such a word) After 3 weeks of the thumping inside my chest I went to my new GP ( two weeks out of med school) and HE admitted this is out of his league. and off I went to the local cardiologist. By the end of Feb. I had failed my echo with critical aortic stenosis. After visiting with a cardio surgeon in March,it was decided I really needed to do something and soon. I begged him to let me get most of my school year behind me and to finish a graduate class I was taking. He agreed, but not without putting restrictions on me and promised I would come if I felt worse. Tuesday May 25th is my surgery and I finally feel ready. The choosing of the valve has been the worse. I really wished I could have had 10 years to put this off as I am sure medicine will improve greatly over time, but I don't. I am ready to feel better and ready to get well and active again.I am tired of sleepless night and anxiety of the whole process.

I am 56, not over weight, perfect HDLs and perfect BP. So I am not the classic heart case and very thankful for a new fresh out of med school GP who was honest enough to say, "I dont know go to a specialist." He saved my life!

Best wishes,and the dont let monkeys control your life.
lu

 

[Rick]

Fromlu: My best wishes on your upcoming surgery. God bless,
Rick

 

[dick0236]

I was told throughout my life by random doctors that they heard a heart murmur.

I really wished I could have had 10 years to put this off as I am sure medicine will improve greatly over time, but I don't. I am ready to feel better and ready to get well and active again.
lu

I was also told thru my teen and young adult years that my docs could hear a heart murmur. Although they showed concern, unfortunately, back then, corrective surgery was not an option. I made it thru my 20s and was in my senior year of college when a cardio told me that the waiting was over. Like you, they grudgeingly, let me finish my degree (about 7-8 months). Waiting another 10 years for improved(?) technology is not a realistic option. While I am sure that the science of OHS has advanced, it is surprisingly very similar to what I experienced 40 years ago. The important thing is to have corrective surgery before serious problems develop. Technical advances will do little good if the heart becomes seriously weakened. Good luck to you, and incidentally, May 25 will be our 53rd wedding anniversary and neither of us thought I'd be around for it......goes to show how much we know.