Life Expectancy

[Alex]

Hi all,

my question in this post is about life expectancy. I am 20 years old and have been told that I might need OHS next june but am going in for my cath test in december to make sure. I first had my first OHS when I was 9 years old and I believe this was a Ross Procedure.

A worry that I will not live a long regular life has been on my mind. My question to you is, do people that have 3+ heart valve replacements in their lifetime have a normal life expectancy of +70?

Sorry that this post does not have more information I am just still kind of depressed and am trying to get over it.

 

[Michelle D]

I'm 28 so I was worried about that as well. My surgeon told me that if I die prematurely it probably be from something rather than my heart. Try going to the Cleveland clinic website, they have a lot of information that will probably make you feel better.

 

[Bryan B]

Alex,

I understand your worries. I try to look at it this way. If I need the surgery and don't have it my life expectancy may only be a few years. As far as answering your questions I really don't know. I am up for my 2nd surgery and think about it myself. But I have made it to 50 (somehow ) so I almost feel as though if I make it to 70 given the fact that I have congenital heart disease as well that would not be too bad. Obviously I hope I surpass that number but I try not to dwell on it. I just want to feel better right now because my symptoms are getting to the point that it is making my life pretty miserable.

 

[dick0236]

Hi all,


A worry that I will not live a long regular life has been on my mind. My question to you is, do people that have 3+ heart valve replacements in their lifetime have a normal life expectancy of +70?

Sorry that this post does not have more information I am just still kind of depressed and am trying to get over it.

Hi Alex, welcome to a site that can answer a lot of your questions. Yes, there are many who go thru multiple surgeries and live normal lives. You mention 3+ surgeries, but this will be your second....right? You may never need the third, much less 3+. I was about ten years older than you when I had my valve implanted. At that time (1967), normal life expectancy was 73.....I passed that almost two years ago.....and I am as active today as I was 43 years ago....well almost:redface2:. They guaranteed mine for 50 years, so I don't have to worry for another 6+ years:tongue2:

 

[Alex]

Hi Alex, welcome to a site that can answer a lot of your questions. Yes, there are many who go thru multiple surgeries and live normal lives. You mention 3+ surgeries, but this will be your second....right? You may never need the third, much less 3+. I was about ten years older than you when I had my valve implanted. At that time (1967), normal life expectancy was 73.....I passed that almost two years ago.....and I am as active today as I was 43 years ago....well almost:redface2:. They guaranteed mine for 50 years, so I don't have to worry for another 6+ years:tongue2:

Oh well the reason I mention 3+ years is because if I get a tissue valve that will need replacement in the future and I have a blood problem so I have to speak with my hematologist to see if I can even get a mechanical valve because of the blood thinning medicine

 

[ALCapshaw2]

Nancy's Husband was told he probably would not live past age 50.
He passed away not too long ago from Multiple Organ Failure at age 75
after 5 Open Chest Procedures for Heart and Lung Issues.
His heart valves were still functioning perfectly well.
He had mechanical valves and was on Coumadin for decades.

'AL Capshaw'

 

[Alex]

this entire experience sucks so much I am just transferring into a great business program at the university of southern california and have always thought id have a bright future and this is making me doubt it so much

 

[Lynlw]

Hi Alex, My son is 22 and has had 5 open heart surgeries ( and his chest was open 2 other times) Its hard to say how long anyone born with Congenital Heart defects (CHDs) that have had surgeries as children or babies will live, mainly because they have only been doing valve replacements 50 years and they have only been able to do surgery on the more Complex CHD kid the last 20-30 years. They also never kept track of the different CHD patients to see how they are doing many got lost to the system since they might have been told as children "your fixed" after surgery (they are working on getting a registry http://www.achaheart.org/advocacy/registry_initiative.php
Also there has been so much improvements in the past 20 years, that you can't base what a 20 year olds life will be like compared to some one born 30 years earlier.

I don't know if you found them, but you also might want to check out the forums at the Adults with CHD Org's site http://www.achaheart.org/index.php Many/most of the members there have had quite a few surgeries starting when they were children or babies too.

 

[dick0236]

this entire experience sucks so much I am just transferring into a great business program at the university of southern california and have always thought id have a bright future and this is making me doubt it so much

Congrats on being accepted at USC. Don't let the surgery change those plans. Several months before my surgery, I had been accepted into the Doctoral program (Economics) at the University of Kentucky. I had a wife and couple of sons, thought for sure, that I would be dead in a short time and gave up my graduate assistanship. I went to work at a large company (with a lot of health, life insurance benefits) after my surgery. My ONE big regret is allowing the health concern too dictate my life. Good luck to you......and always follow your dream:thumbup:.

 

[Lynlw]

Oh well the reason I mention 3+ years is because if I get a tissue valve that will need replacement in the future and I have a blood problem so I have to speak with my hematologist to see if I can even get a mechanical valve because of the blood thinning medicine

Which valve may need replaced? Your old/native Pulmonary valve, that is in the Aortic spot, or the pulmonary valve they replaced (probably with a human or other tissue valve)?

 

[Lionheart]

Hey Alex,
We all go thru a stage of doubt and depression when we learn that we need surgery. That's normal.

The survival rates are really high nowadays, even for repeat surgeries. That's one reason I chose a tissue valve, even knowing that I would have to do this again. My first surgery was when I was 11. Another when I was 53. So I will probably need another at some time in the future and I plan to be there for it.

I say knock this thing out, heal up, go to USC, and get out there and Rock this world!
John

 

[Jkm7]

When you meet with your surgeon, ask him/her what they think re: percutaneous (by cath in method like stent placement) valve replacement. They have been doing such valve replacements on patients who were too ill to have OHS but are now starting to do them on many more patients. If you were to ever need a third surgery, there may well be an excellent chance you could have that replacement done in the cath lab instead of opening the chest.

We are all so fortunate to live in a time where we can have these surgeries/replacements. You are so young and advancements are coming so fast, it's impossible to predict what the next 20-30 years will bring to the field of cardiology and heart surgery. Just keep on the course you've set for yourself and keep your eye on the goals.

 

[Luana]

Alex, I hope it will be of consolation to you to know that there are people who are alive and active and living great lives who had VR surgery back in the 1960s when it was in its infancy. The technology and improvements since then are light years ahead of what it was like 50 years ago.

Your chances of living a long and productive life are excellent. I have no doubt your will have a very bright future.

 

[Alex]

Alex, I hope it will be of consolation to you to know that there are people who are alive and active and living great lives who had VR surgery back in the 1960s when it was in its infancy. The technology and improvements since then are light years ahead of what it was like 50 years ago.

Your chances of living a long and productive life are excellent. I have no doubt your will have a very bright future.

those are the kind of things i need to hear!!

 

[Gail in Ca]

I think you can expect a pretty good life expectancy. Less than 2 yrs ago, I had my 3rd OHS. I was 54 then and my surgeon really was not wanting to give me a tissue valve. He said that I could only expect 10 yrs from a tissue valve, and since I have been otherwise a healthy person, I would certainly expect to have a 4th or even 5th surgery if I got tissue. When I added that my Mom was doing really well at age 90 and my Dad lived to be 86, he was going to give me a mechanical if at all possible. I think most people who have had more than 1 OHS think that it must affect their life expectancy. I would say to go ahead and live your life as you would have without the surgery. Have fun at Southern Cal! My daughter attended that school. You really can't think about how long you are going to live after surgery vs no surgery. No one seems to have a good answer for that life expectancy question. I think if you are a healthy person and stay that way, you will be able to go through many surgeries if need be. Always pick the best surgeon you possibly can. Enjoy life!

 

[ALCapshaw2]

Here is the profile from one of our older members

Basic InformationDate of Birth ********* (74)

About d*******

Surgery Aortic valve replacement (Starr-Edwards mechanical "Ball-in-Cage" valve) Aug. 1967.

The original valve is still "tickin" away. (his valve was discontinued decades ago but is still working for him)

Heart History Aortic Stenosis. Problem was diagnosed in 1966 to be the result of misdiagnosed rheumatic fever in childhood. Cardiologists now feel it may have been a "bicuspid valve". Either way, surgery corrected the problem.

Medications warfarin 5mg , *********

----------------------------------
I gave you some of the details of Nancy's Husband Joe in a previous response.
He outlived many of his school mates in spite of multiple heart and lung surgeries (5 OHS if I remember correctly).
His mechanical valves were still working when he finally passed away from multiple organ failure at age 75.

'AL Capshaw'

 

[Alex]

I have another question. When I brush my teeth my gums bleed often. Should I be worried about endocarditis since I had a ross procedure done when I was 9?

 

[Lily]

Ask your dentist about this, Alex. You don't want bleeding gums. Nobody wants bleeding gums. You may need to change to a softer bristled toothbrush, you may need to brush less-vigorously, and/or you may need to change your toothpaste to something with "sensitive" in the name. Take care

 

[Lionheart]

I have another question. When I brush my teeth my gums bleed often. Should I be worried about endocarditis since I had a ross procedure done when I was 9?

Hey Alex,

I think the bleeding indicates bacteria growing around the gums. This is usually caused by food particles and some blood pressure medicines, such as Procardia or Nifedipene may also cause gum problems. I had similar problems and went to a gum doctor (a Periodontist) who cleaned my teeth really well and got me motivated to floss my teeth regularly to keep the food particles out and the bacteria levels down. My gums improved with flossing and now they don't bleed.

All valve patients should try to maintain good gum health to reduce the bacteria. Here's what the Mayo Clinic says:

To help prevent endocarditis, make sure to practice good hygiene:

* Pay special attention to your dental health — brush and floss your teeth and gums often, and schedule regular dental checkups.
* Avoid procedures that may lead to skin infections, such as body piercings or tattoos.
* Seek prompt medical attention if you develop any type of skin infection or open cuts or sores that don't heal properly.

I hope this helps,
John

 

[Eva]

this entire experience sucks so much I am just transferring into a great business program at the university of southern california and have always thought id have a bright future and this is making me doubt it so much

You shall be fine, Alex. I hope the above members have given you some peace of mind. There are also many other members who had several surgeries and are doing OK. We all go through these doubts no matter what age or which surgery...this is normal. If the stress is too much to handle, you may ask your doctor to recommend something to help you get through this period until your regain your better health and healed heart and start enjoying your life and education again.

I have another question. When I brush my teeth my gums bleed often. Should I be worried about endocarditis since I had a ross procedure done when I was 9?

Ask your dentist about this, Alex. You don't want bleeding gums. Nobody wants bleeding gums. You may need to change to a softer bristled toothbrush, you may need to brush less-vigorously, and/or you may need to change your toothpaste to something with "sensitive" in the name. Take care

I agree with Lily. Also, make sure that your dentist takes care of your gum and makes it healthier before the surgery.