Odds of success?

[Cynthia]

Hi everyone.

You all have been so helpful. I go back to my doctor Monday to find out more info from the 24-hour holter monitor and other tests.

Meanwhile, the doctor said that my leaky bicuspid aorta valve will need to be replaced, it's just a matter of determining when.

Basically, at this point, I'm scared of heart surgery.....of dying.....and leaving behind three young children. All of you are so upbeat - welcoming the surgery and talking about how you'll handle recovery and returning to previous lifestyles. But to me, heart surgery sounds like brain surgery - something very complicated and serious. Are the odds in my favor more so than I realize? I just turned 38. Sorry to be down, and maybe this isn't appropriate to discuss....

Also, I've joined a gym. For the last month, I've done 25-minute cardio workouts three times a week. My however-odd-it-might-be thought is to make sure the rest of my heart is as strong as possible. The problem is that I've always been athletic, and now I'm profusely sweating and gasping for breath. The workouts aren't unusually difficult....they're usually on arc trainers (EFX?) on intervals on a mid-level of difficulty. I'm checking my heart rate throughout, and it's always going above 171, so I slow myself down.

I would like any advice from any of you in my shoes, on facing what I view as a MAJOR surgery.....and exercise.

BTW, I am a bit excited as I haven't had any really extended, bad periods of heart jumping and heart racing for over a week! I wonder why?

Thank you from a confused woman!

 

[carista]

Hi Cynthia!

I think almost everyone has that same fear before having heart surgery, I think it would be hard not to think about that. I know for me, the surgeon gave me a less than 1% chance of mortality, and I think for most people without any other health problems it's around the same so the odds are definately in your favor -- they perform so many of these operations every year!

As far as working out, have you talked to your cardiologist about what you should and shouldn't do? I didn't have a leaky aortic valve, I had aortic stenosis so you might not be able to do the same things I was able to, but my cardiologist told me I could do as much cardio as I liked as long as I wasn't getting palpitations while working out and I believe he mentioned to keep my heart rate under 160 and no weight lifting. I would ask your cardiologist about it to be sure though if you haven't already.

Good luck with your test results on Monday and I'm sure more people will be along soon to chime in and help make you feel better!

Carista

 

[PJmomrunner]

Hi Cynthia! And welcome!

Everyone who wanders in here brings uncertainty and some amount of fear. If they hang around and seek information and absorb others' experience, those feelings will be mitigated by knowledge and support.

Maybe it will help you to know that 1-2% of the population has a bicuspid aortic valve and the majority never need replacing. Even if yours does, it could be years--decades, even. IT IS MAJOR SURGERY, but there are a lot of dedicated and talented doctors, nurses and technicians out there who make sure we (valve replacement patients of all ages and in all conditions) get through it 98+% of the time. Knowing about your valve problems at 38 puts you in the position to have elective surgery rather than emergency surgery, which does improve your personal odds. Do not focus on the slight possibility of dying. It's not productive and, frankly, it's just plain unrealistic! (Really! Isn't that great??!! ) You'll be around when that little cutie is grey-haired with babes of his own! (Of course, you may be ticking, mooing or oinking! )

All that said (and not to be a downer myself) you really should ask your doctor if he was able to visualize your ascending aorta (I assume you've had an echo) and what it measured. People with BAV's typically have larger aortas and it is prudent to track their size. In fact, you should get a copy of any reports, so that you can be fully informed.

Take care.

 

[ALCapshaw2]

Welcome Cynthia !

YES, Valve Replacement is MAJOR surgery, BUT, the surgeons who do this regularly have developed their skills to a highly refined art.

There has been considerable discussion / information about surgical risks for Valve Replacement in these forums.

Bottom Line: For First Time surgeries in patients under age 60, the risk of mortality and morbitity is 1% for each category when performed by a surgeon who does the specified procedure on a regular basis (typically 200 heart surgeries or more per year), especially when performed in a hospital that has a high volume of heart surgeries (>1000 per year). Practice makes Perfect , for both the surgeon and the supporting staff.

You don't even want to think about the risks of mortality and morbidity if you do NOT fix the problem, i.e. if you do not have this life saving surgery. After certain heart valve parameters are exceeded, waiting longer for surgery only guarantees further damage to your heart muscles and walls which can become PERMANENT if permitted to linger too long. FWIW, SURGEON's seem to have a better perspective on WHEN to proceed with replacement surgery since they do not like to wait until the damage becomes severe.

Regarding exercise, I KNOW that weight lifting is NOT recommended with valve disease because that increase the pressures in the heart (and on the valves). Stress tests are also usually not recommended for most valve issues so you may want to limit your aerobic exercises, or at least cut back on your maximum Heart Rate. Best to discuss this with your Cardiologist or PCP.

If you read through the posts from Newbies you will quickly discover that you are not alone in your fears and concerns. Almost everyone agrees, the Waiting is the hardest part!

Hopefully you too will come to that point of 'quiet acceptance' and look forward to your successful replacement and improved quality of life.

Best wishes,

'AL Capshaw'

 

[OldManEmu]

The odds are in your favour

The odds are in your favour

The good news is as Al said if you are under 60 and have no other health problems (diabetes, renal failure, impaired lung function etc) you have a 98%+ likely hood of a good out come, the 2% bad is usually 1% death and 1% non fatal stroke. The bad news is if nothing is done you will die from heart failure. I went into class IV heart failure before surgery and I can tell you it is much worse than surgery. The struggle to get through a workout and elevated pulse rate is not because you are out of shape it is a symptom that your heart can't keep up with the demands you are making of it. You should check with the cardio to determine what is an appropriate level of exercise with the condition of your valve.

 

[Cynthia]

Carista, PJ, Al, OldManEmu....

Carista, PJ, Al, OldManEmu....

I can't thank you enough for taking the time to share what you know....helping me put things into perspective.

I never expected to laugh at all of this until I read from PJmomrunner: You'll be around when that little cutie is grey-haired with babes of his own! (Of course, you may be ticking, mooing or oinking! ) I needed that! THANK YOU!


I will definitely ask on Monday two things:

* Copies or info from all my echos and other tests
* Instructions on exercise

I look forward to being able to share this with you, and getting your thoughts.

YOU ARE INVALUABLE!

God bless you all,
Cynthia

 

[Kristy]

PVC's related to hormones?

PVC's related to hormones?

BTW, I am a bit excited as I haven't had any really extended, bad periods of heart jumping and heart racing for over a week! I wonder why?

Hi Cynthia: my observations about increased palpitations (PVC's, PAC's, etc.) is that for me, they increase dramatically just before I get my menses (sorry guys if this is too much info ). I have tracked this now for 3 months and there seems to be a hormone correlation. Not sure if anyone has ever studied this, but we all know how dramatically hormones can affect our bodies and seems that this might be a factor. (Palpitations essentially gone once I start my period).

Just my observations!
Kristy

 

[Karlynn]

Cynthia, welcome!

I had my mitral valve replaced when my children were 5 and 7. As you can tell by my avatar photo, they are grown now. My son is graduating from college in 2 weeks, my daughter in December. Oh...and I'm going to become a grandma in October (a young one, but a granny none-the-less!) Life has been good. I had much of the same feelings you have now. The unknown is frightening. But, as others have said, this is a highly successful surgery, particularly if you go into it in otherwise good health. I didn't even go in to mine in the best of health. I was having tons of symptoms that dragged me down. But I came through and have lived a very happy life as chief cook, chauffeur and bottle washer. We've been to Europe twice, once with both our kids and once with our daughter.

I would not re-do my experience for anything. Life is good and rich in experiences and love.

 

[jayaresq]

Hi Cynthia

Hi Cynthia

Welcome. As everyone else has pointed out, the odds are OVERWHELMING in your favor that you'll come out of AVR healthier, relieved and ready to devote your long life to your kids. I was so convinced by what I read here that I didn't even tell my 5 year old until the day before. My best advice is to work with your cardiologist, shop your surgeon, and pick the best valve that suits the three of you. My daughter was a real boost to my recovery. Nine months after the same surgery you face, I'm a happier, wiser, healthier man and parent. Keep your eye on the prize. Best of everything. -- Jim

 

[Barbara Stewart]

Odds of success

Odds of success

Cynthia,

Everyone else has told you the statistical chances of survival, but I have one more piece of information. THose babies of yours increase your chance of survival enormously. I don't have any statistics to back this up, but wanting to live is as important as any other. Those children will pull you through. I promise and I don't make promises lightly.

Barbara

 

[tobagotwo]

Barbara has made a sanguine observation. You're far too anchored to this earth to leave it now.

Kristy, to add to your sensible statement, there are frequently spontaneous arrhythmias associated with menopause and perimenopause as well. Younger ladies with replaced valves should note that, and avoid unnecessary future consternation.

Cynthia, you are not likely to be doing yourself or especially your heart any favors by pushing yourself with cardio exercises. If you're gasping, your heart is stressed. You could wind up feeling faint from it, or start an arrhythmia caused by overburdening your heart. You can also begin or increase the rate of left ventricular enlargement (hypertrophy) through this type of cardiac stress.

Try walking and other less strenuous ways of keeping the rest of your body fit. You will still be fit, but you won't hasten damage to your heart.

Think of having a job that entails filling a swimming pool with a one-gallon water bucket that has a big hole in the bottom. Now find out that you'll be fired if you don't fill the pool at a rate of at least thirty gallons a minute. That's what your heart is trying to do.

Best wishes,

 

[Cynthia]

Tobagotwo

Tobagotwo

Try walking and other less strenuous ways of keeping the rest of your body fit. You will still be fit, but you won't hasten damage to your heart.

Think of having a job that entails filling a swimming pool with a one-gallon water bucket that has a big hole in the bottom. Now find out that you'll be fired if you don't fill the pool at a rate of at least thirty gallons a minute. That's what your heart is trying to do.

Best wishes,

WOW. I'm getting this whole picture better now. I appreciate that comment. My backwards thinking is to get the rest of my heart "up to speed" (ha) by pushing it. But, I am pretty much gasping and feeling a bit faint by the end of the cardio workouts. I'll tone it down a bit. My father just went through this surgery and also told me that I'm in the danger-zone with my heart rate (171 bpm). No wonder I'm gasping! I'll find out a lot more tomorrow morning I think at the appt.

I truly appreciate your time and advice,
Take care,
Cynthia

 

[Superbob]

I think it is excellent advice to be cautious about exercise prior to surgery. Don't stress yourself.

After the surgery, cardiac rehab is an excellent way to get into a gradually increasing exercise path while being monitored and advised about what's best for you.

You'll do fine!

 

[Rush20]

Cynthia, as a relatively young man at the age of my AVR (40), I had similar concerns over my children, family, etc.

Looking back, the "good" news is that I had little time to ponder the events as I went from Diagnosis to surgery within 30 days. I wish I had found this site prior to surgery as it was only during my 6 weeks of down time post surgery that I enjoyed the extra time to surf the net and eventually found these great people.

Once you confirm the surgery, etc. I would also suggest you ask whether or not you are a candidate for the minimally invasive procedure. Depending on the surgeon, this might be a great alternative that cuts the recovery time considerably.

Best wishes!

 

[ks1490]

I shared your disbelief, still do but am now more accepting

I shared your disbelief, still do but am now more accepting

My new motto is, "There's never a good time for Open Heart Surgery, except when it's saving your life!". I too was diagnosed with aortic regurg last year at age 38, now 39, to date I'm asymptomatic, it was discoverd by a fluke. Anyway, I can share some comforting words that my cardiologist shared with me - he said "You're not going to die from your heart, I won't let you." His view, and now mine, is that this is a slowly-evolving problem that, now that it's detected, will be monitored and may potentially require fixing by surgery. If so, that's scary, but we're both young and healthy and, if we need to go through it, better now than later!

 

[Sona]

Hi Cynthia, Welcome!!!
I undestand your fear. I am going for OHS on 18 th of this month. I am 30 Years old And a mother of 3 1/2 years old beautiful doughter. This is my 2 surgery. I was also a bit scared before I spoke to my father about surgery and my fear. He told me that Just belive in God and He definitely do some thing good. Belive in your children, and your family's prayers and blessing. And my fear is gone. Now I am ready for surgery.
And you know that we(my hubby doughter and I ) are alone here. My all family members are in India. But I know on my surgery day all will be praying for me.
My family is not physically with me but their blessing and prayers are always with me.
Just forget about surgery and start spending good time with your children and with your family.
Please try to make your self strong. You know you are mother of beautiful children. Thay want YOU more than other thing in the world. If you make yourself strong, definitely you win.

Take care

--------
Sona

 

[MomOfThree]

Hi!

Hi!

Hi Cynthia! Welcome to the site. Your fears are similar to a lot of our fears before surgery. It's really scary to walk around thinking you're fine to finding out you have a problem with a heart valve. I too was really, really scared and definitely was afraid of dying and leaving my 3 young kids. It was about 4 years of monitoring my valve before I actually had to have surgery. I had surgery 16 months ago at age 43. If it makes you feel any better ? (believe me I know it's scary!) I feel great. I thought I felt fine before the surgery, but now realize that I was definitely slowing down without realizing. Good luck to you and keep on posting!! Take care, Martha

 

[Mary]

WOW. I'm getting this whole picture better now. I appreciate that comment. My backwards thinking is to get the rest of my heart "up to speed" (ha) by pushing it. But, I am pretty much gasping and feeling a bit faint by the end of the cardio workouts. I'll tone it down a bit. My father just went through this surgery and also told me that I'm in the danger-zone with my heart rate (171 bpm). No wonder I'm gasping! I'll find out a lot more tomorrow morning I think at the appt.

I truly appreciate your time and advice,
Take care,
Cynthia

What did you find out at your appointment?