ALCapshaw2
Well-known member
FLOSSING Helps to prevent gum bleeding.
Do you floss regularly?
Do you floss regularly?
Life Expectancy
- Thread starter Alex
- Start date
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Alex
Active member
im not sure why but i cant stop feeling like my life is over. Its weird because ive already had my ross procedure when I was 9 but this is all becoming very real for me
I was told when I was in my early 20s that I would need a heart valve in 20 years. THAT's quite a load to carry for a couple decades. I may have preferred to hear 'next year.' In any case, the advice and personal experiences others have given you are all good -- a new valve will have you feeling much stronger and, overall, you should be feeling much better. It should also considerably extend your lifespan -- and, as others have said, by the the time you need another surgery (if ever) procedures and valves may be considerably better.
I don't know what type of blood problem you have, but I wouldn't fear coumadin/warfarin. It's mistakenly called a blood 'thinner.' It doesn't really thin the blood - it just increases the time it takes for your blood to clot. Even with other blood issues, the anticoagulant should be fairly easy for an educated professional to manage.
Personally, if I was your age again, I'd keep moving forward as if I was at full strength. I'd carefully consider my heart care options and make the best decision for me. And then (speaking only from personal experience), I'd apply to a school about fifteen miles West and become a Bruin. (Yes, USC is okay, too)
I don't know what type of blood problem you have, but I wouldn't fear coumadin/warfarin. It's mistakenly called a blood 'thinner.' It doesn't really thin the blood - it just increases the time it takes for your blood to clot. Even with other blood issues, the anticoagulant should be fairly easy for an educated professional to manage.
Personally, if I was your age again, I'd keep moving forward as if I was at full strength. I'd carefully consider my heart care options and make the best decision for me. And then (speaking only from personal experience), I'd apply to a school about fifteen miles West and become a Bruin. (Yes, USC is okay, too)
Alex
Active member
First, congrats on being accepting into you school. What a great thing to look forward to. Worst case scenario your plans might be delayed a month or so.
My dad always told me "Don't waste your life worrying about things you can't control." As I've gotten older, I've come to realize it's the best advice he ever gave me. I use it all the time when I catch myself in the cycle of worry about my health.
Some of us have been dealt the cards of congentital heart issues. We can't control that. What we can do is stay positive and optimistic by focusing on how lucky we are to have access to the surgicial intervention techniques of today. Technology is truly amazing and only get's better every year. You have many wonderful years ahead of you, I'm sure!
Keep us posted.
My dad always told me "Don't waste your life worrying about things you can't control." As I've gotten older, I've come to realize it's the best advice he ever gave me. I use it all the time when I catch myself in the cycle of worry about my health.
Some of us have been dealt the cards of congentital heart issues. We can't control that. What we can do is stay positive and optimistic by focusing on how lucky we are to have access to the surgicial intervention techniques of today. Technology is truly amazing and only get's better every year. You have many wonderful years ahead of you, I'm sure!
Keep us posted.
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Very well said:thumbup:. In about 3 months I will celebrate my 75th birthday. That's about TWICE the age I was expected to live WITHOUT the surgery. At the time of my surgery, life expectancy for a 30 year old "healthy" male was 73, so I have beaten the "house odds" by a couple of years. My next goal is to be the FIRST to go 50 years on one valve:tongue2::confused2::cool2::wink2:.
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You've gotten a few good suggestions and yes bleeding gums are a concern, mainly because it is usually a sign that your gums aren't as healthy as they should be. (they are more of a symptom not the problem) The best thing you can do is to take care of your teeth and gums, but remember even in people with heart problems, the chances of getting BE are pretty low, so try not to worry yourself about it TOO much.
Justin has had a problem with bleeding gums when he brushed his teeth for a long time. They didn't bleed every day, but pretty often. Since besides his heart defects and valves, conduits and a few patches in his heart, he also had BE when he was 11 so he has a few of the things that make you a higher risk to get BE.
A few months ago, we decided he should try one of the Sonic toothbrushes, because I've read they help with gum health and bleeding gums. http://www.sonicare.com/professional/dp/ClinicalStudies/Default.aspx It just occurred to me this morning he hadn't mentioned his gums bleeding for a while so I just asked him and he said after the first couple weeks his gums haven't bled at all. Now I don't know if it is just because of the sonic action or the fact it has a 2 min timer so he is probably brushing longer..my guess is it is probably a little of both. They ARE a little expensive (50-100+ ) After reading reviews we picked the phillips sonicare, because it seemed like people who tried a couple brands liked their brushhead size better, it was more comfortable ect.. He got the "essence" at target for less than 50 dollars w/ and extra brush head. But with all the big Christmas sales already started, you could probably find good deals on them..Or you could always ask Santa
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Reiterating what we talked about last, Alex.....don't worry about the what if's or how long you will live after your surgery. That is not in our control. We may die of completely different causes that are not even related to our hearts, so why waste your time worrying about that. Concentrate instead of moving forward & having the surgery done so that you can go on with the rest of your life.
I had my first 2 surgeries many years ago (1975), when valve replacement was still in it's infancy & I'm still here, thank God, after 35 years.
I know you are frightened beyond belief but so were the rest of us. We know exactly how you feel because we've been there & done that!
You will be just fine!
So onward my friend & don't look back!
I had my first 2 surgeries many years ago (1975), when valve replacement was still in it's infancy & I'm still here, thank God, after 35 years.
I know you are frightened beyond belief but so were the rest of us. We know exactly how you feel because we've been there & done that!
You will be just fine!
So onward my friend & don't look back!
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Alex
Active member
another question about endocarditis: Would I know if I have it? Im getting a little worried. Are the symptoms severe and is everyone symptomatic?
Endocarditis has two traditional classifications acute and sub acute.
If it is acute you will be in a severe state within a few days and require emergency treatment and if untreated will die within days.
I had sub acute endocarditis for 9 months before it was diagnosed.
My symptoms were vague. Joint pain in the first couple of months that resolved, a very low level fever at times, dry cough that got worse as time went by (caused by heart failure), night sweats. Every time the doctor put me on antibiotics the symptoms would resolve within 7-10 days only to return about 2 weeks after finishing the antibiotics. The antibiotics kill the infection in the rest of the body however it remains in the heart. It then spreads again to the rest of the body again after the antibiotics are stopped.
Blood cultures are the only way to accurately determine if a person has endocarditis and you shouldn't be taking antibiotics as the infection is unlikely to found if you are.
If it is acute you will be in a severe state within a few days and require emergency treatment and if untreated will die within days.
I had sub acute endocarditis for 9 months before it was diagnosed.
My symptoms were vague. Joint pain in the first couple of months that resolved, a very low level fever at times, dry cough that got worse as time went by (caused by heart failure), night sweats. Every time the doctor put me on antibiotics the symptoms would resolve within 7-10 days only to return about 2 weeks after finishing the antibiotics. The antibiotics kill the infection in the rest of the body however it remains in the heart. It then spreads again to the rest of the body again after the antibiotics are stopped.
Blood cultures are the only way to accurately determine if a person has endocarditis and you shouldn't be taking antibiotics as the infection is unlikely to found if you are.
alex in 2070 theres a club night out in my place hull england, i will get you a ticket so dont be late ok..............you will be just fine ...........
send two tickets please ...my mom is 92 (lives on her own) her sister my aunt is 94 and on her own ...with their genes and the advances made daily I'll only be 127 NO PROBLEM ...neil what time ?
Kathy McCain
Well-known member
Alex,
You have some true wisdom here, from people who have been through it. I especially like Dicks advice. I can not ad anything else, but please try not to worry so. I believe you're chances of living a full normal life span are excellent!
Take care
You have some true wisdom here, from people who have been through it. I especially like Dicks advice. I can not ad anything else, but please try not to worry so. I believe you're chances of living a full normal life span are excellent!
Take care
Alex
Active member
would the doctor see endocarditis on the yearly echocardiogram I receive?
Hi Alex,
If you feel like you have symptoms you should speak to your doctor.
From WebMD
Symptoms include:
* Chills and fever.
* Fatigue.
* Weight loss.
* Night sweats.
* Painful joints.
* Persistent cough and shortness of breath.
* Bleeding under the fingernails.
* Tiny purple and red spots under the skin.
Do you have a good family or cardiac doctor that you can talk to if you have concerns about your health?
John
If you feel like you have symptoms you should speak to your doctor.
From WebMD
Symptoms include:
* Chills and fever.
* Fatigue.
* Weight loss.
* Night sweats.
* Painful joints.
* Persistent cough and shortness of breath.
* Bleeding under the fingernails.
* Tiny purple and red spots under the skin.
Do you have a good family or cardiac doctor that you can talk to if you have concerns about your health?
John
Alex
Active member
I spoke to my cardiologist today and he told me not to worry if I do not have a fever. However, I have been having unexplained night sweats for a while and that worries me
Alex,
I responded early in this thread but will respond again regarding the bleeding gums. I had infective endocarditis (i.e. bacterial endocarditis) and then I had a Ross Procedure. I am also up for another surgery as soon as I can get some financial assistance or my condition deteriorates to the point it is considered emergent (my cardiologists have me on a "no work" restriction). Endocarditis is always a concern with anyone with valvular disease, but if it's any comfort having your own pulmonary valve in the aortic position reduces the odds somewhat. I have had my gums bleed occasionally when I brushed my teeth. I have also cut myself several times (and there is a lot of bacteria on your skin). I have had a bacterial bladder infection and a bacterial sinus infection as well since my surgery and avoided a repeat case of endocarditis. Since I have had it in the past I am somewhat paranoid when things like this happen, but knowing the symptoms I had in the past have helped ease the worry a bit because I now know that if I start having the slightest symptoms that I had in the past I will insist on getting a blood culture drawn. My family doctor totally missed the symptoms for at least 3 months before it was finally diagnosed. By that time the damage was done (perforations to my aortic valve leaflets) and surgery was necessary. But then again my condition was such that surgery was not a matter of if but when...the endocarditis just sped up the timeline. If you have a bleeding disorder you are more prone to bleeding gums. You need to talk to your doctors about your bleeding (or blood) problem when it comes to the risk of endocarditis and also how that will affect your valve choice.
I responded early in this thread but will respond again regarding the bleeding gums. I had infective endocarditis (i.e. bacterial endocarditis) and then I had a Ross Procedure. I am also up for another surgery as soon as I can get some financial assistance or my condition deteriorates to the point it is considered emergent (my cardiologists have me on a "no work" restriction). Endocarditis is always a concern with anyone with valvular disease, but if it's any comfort having your own pulmonary valve in the aortic position reduces the odds somewhat. I have had my gums bleed occasionally when I brushed my teeth. I have also cut myself several times (and there is a lot of bacteria on your skin). I have had a bacterial bladder infection and a bacterial sinus infection as well since my surgery and avoided a repeat case of endocarditis. Since I have had it in the past I am somewhat paranoid when things like this happen, but knowing the symptoms I had in the past have helped ease the worry a bit because I now know that if I start having the slightest symptoms that I had in the past I will insist on getting a blood culture drawn. My family doctor totally missed the symptoms for at least 3 months before it was finally diagnosed. By that time the damage was done (perforations to my aortic valve leaflets) and surgery was necessary. But then again my condition was such that surgery was not a matter of if but when...the endocarditis just sped up the timeline. If you have a bleeding disorder you are more prone to bleeding gums. You need to talk to your doctors about your bleeding (or blood) problem when it comes to the risk of endocarditis and also how that will affect your valve choice.
Alex
Active member
based on the research i did ross procedure has a low risk of reoperation. I wonder why I need reoperation after 11 years
ALCapshaw2
Well-known member
Alex -
You might want to check out the Cleveland Clinic Website info on Ross Procedures.
My understanding is that they no longer recommend RP because of a high incidence of "early failures".
I suspect that the skill level of the Surgeon may also be a factor.
The Most Prolific Ross Procedure Surgeon in the USA is Dr. Paul Stelzer in New York with over 400 performed. Besides being the most prolific, his patients also believe he is the Best (or certainly one of the best) in terms of successful outcomes. There have been several 'less favorable outcomes, including death' from 'less experienced Ross Procedure Surgeons.
You might want to check out the Cleveland Clinic Website info on Ross Procedures.
My understanding is that they no longer recommend RP because of a high incidence of "early failures".
I suspect that the skill level of the Surgeon may also be a factor.
The Most Prolific Ross Procedure Surgeon in the USA is Dr. Paul Stelzer in New York with over 400 performed. Besides being the most prolific, his patients also believe he is the Best (or certainly one of the best) in terms of successful outcomes. There have been several 'less favorable outcomes, including death' from 'less experienced Ross Procedure Surgeons.
