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husband has leaking aortic valve

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Posted 1/18/2011 2:48 AM (GMT 0)
My husband who is 47 and extremely fit has been diagnosed with moderate to severe leaking aorta valve and has had symptoms for a while....a couple of years ago it was mild to moderate...they mentioned open heart surgery and also said he might have a narrowing of an artery...seperate issue...Going to Mayo for a second opinion...Any advice welcome...Thx
Posted 1/18/2011 4:30 AM (GMT 0)
1 1/2yrs ago I had my valve replaced, one bipass and a 6.5 cm Thoracic Aortic Aneurysm repaired and now I'm doing fine.
Posted 1/18/2011 11:04 AM (GMT 0)
Thank you. I'm glad you are doing well.
Posted 1/18/2011 7:18 PM (GMT 0)
Could be a genetic issue, possibly born with or inherited it. Either way a second opinion is worth investigating especially of this seriousness of a health issue.
Good Luck and God Bless!
Posted 1/19/2011 1:55 AM (GMT 0)
Thank you! (-:
Posted 4/17/2011 8:41 PM (GMT 0)

Would like to hear a follow-up on your husband's condition, my son was diagnosed with a very mildly leaky aortic valve (medical terms: Aortic Reflux or Aortic Insufficiency), at 4 years old. They say there's NOTHING to do for it, except monitor it for LIFE & hope that it doesn't progress!!???!??? VERY scary thought to LIVE with confused (us, NOT him, he has NO idea, of course). But I definitely appreciate any info on the subject I can get!

Thanks! :)

Posted 4/17/2011 10:05 PM (GMT 0)
Hi lybith,

I am sorry to hear about your son being diagnosed so young.  I did hear of a very positive story about a young boy diagnosed and is now grown and has still not needed the surgery yet. 

We did go to Mayo for a 2nd opinion on my husband.  We went to Rochester, they are very good there.  Their equipment was so much more thorough,..state of the art technology.  If you ever get a chance, go there for follow up.  Anyhow, they said my husband does have a severe leak and he will need surgery but can wait until some other measurements become more severe.  He will go back t Mayo each year for his follow up.  Here is one thing we learned.  It is not good to lift heavy weights or do things that require you to hold your breath.  My husband has lifted weights since he was 16 and had to give that up.  Meanwhile, my husband still has symptoms, he doesn't tell me because he doesn't want me to worry.  Our hope is that they come up with a new surgery that won't be open heart someday...by the time he needs it. 

I would keep a log of all of your son's symptoms...if he has any...and do not miss any appointments for rechecks.  The doctor did tell us that people with leaking aortic valves live just as long as those who don't have them.  The differnece is that most need it repaired by open heart surgery some day.   

We are grateful my husband can wait for now.  The doctor said that pig valves only last 10-15 years and then it would need to be replaced again.

Your son's leak is very mild, so that is good.  If he ever needs surgery in the future...hopefully it will be when he is much older and they will be able to do it in another way, not open heart.  People at Mayo Clinic are already working on this.

God bless you.  Will keep your little boy in our prayers.  Prayer changes things and these tough situations definitely keep us praying and close to God.

 

Posted 4/18/2011 2:24 PM (GMT 0)
bellski

Happy to read you did well at Mayo - happens to be my stomping grounds.  Only 45 miles from where I live and I will frequently suggest Mayo as I know of many people that are very happy with the testing and thoroughness.  Great response to lybith.

Kindly,

Kitt

Posted 4/19/2011 2:09 PM (GMT 0)
lybith

I was born with bicuspid aortic valve diesease and aortic stenosis with regurgitation. I'm 35 years old and perfectly healthy! Up until last year I visited my cardiologist every year for a check-up and monitoring of the valve, now I visit every 6 months. I do have a Thoracic Aortic Aneurysm, which is typical for my type of congenital heart disease.

I've never had any symptoms, knock on wood. Once my aneurysm measures 4.5 cm I will have the valve replaced and the aorta repaired. Now a days, it's a pretty common surgery.

Congenital heart defects are the one of the most common birth defects and the majority of us live long healthy lives.

Where do you live? The Sibley Heart Center at Children's Healthcare of Atlanta is one of the best pediatric cardiac programs in the country! www.choa.org/cardiac
Posted 4/21/2011 5:56 AM (GMT 0)
@ bellski: thanks for your reply! I hope & PRAY that my son will NEVER have to know of valve replacement surgery, or ANY surgeries, for that matter! But like I said, it's a TOUGH thing to have on your mind with your little one. Our Cardiologist did tell us about the weight lifting, but didn't say anything about the holding of the breath to us??? maybe because of the stage your husband's condition is in? I don't know, they DID say that aerobic exercise is GREAT for him, he can play all sports, he can "work out" in the future with very light weight & more reps, if he so chooses, but mainly aerobic and I think exercises like calistetics (I'm sure I spelled this wrong!?!) Which is great, but my son is a big boy for his age (structurally, not over weight) and I can envision him older and being this huge strapping guy, that is, OF COURSE, going to want to "bulk up" a bit! Or at the very least have the ability to do what everyone in the room would expect of a 6'4/6'5" (his guestimated-projected adult height, by Pediatrician), 230 lb. man to do if some heavy lifting is required!!!! I think about these things & also, when the time comes in his life when he's on the "need to know basis" with his condition, will HE make the right choices for his HEALTH, when it comes to certain activities, hobbies and....well, if there's a "passion" of his, that is contraindicated with his situation....then what??? So MANY things....we discovered his condition on a fluke check-up ("just for peace of mind, he's NEVER had actual symptoms, THANK G-d!!!!) Let me tell you, when the person is THIS YOUNG and it's your child, and there are NO symptoms, you just found out, because you found out... thinking about going to the Cardio EVERY YEAR, from the age of 4, (for a big long test too, it's not even like they're just listening w/ a stethescope) , it's like having to go in to see if you "gotten worse", every year for the rest of your life, from the AGE OF 4!! Sometimes I wish he was like most people who discover this @ a much later age & live a majority of their lives CLUELESS, who wants to "roll the dice" every year, from the age of 4??? Who wants a "pre-existing" starting from the age of 4??? When all the while, the original complaint had NOTHING TO DO with his discovered condition & we might not have ever had to know & live in this lingering fear..... ignorance was bliss!!!!! But on some level, I am greatful to get the "heads up"...so that we can raise him with certain habits and ideologies that will promote good health (not lifting too heavy, eating heart conscience, execising, good dental hygene/health :so to prevent periocarditis= serious bacterial infection of the heart, sometimes assoc w/ poor dental health, etc,) I just pray and pray and pray some MORE!!! :) @ jdiane: Thanks for sharing, I hope for you better health and positive outcomes on any future medical adjustments! And THANKS for the info on the facility in ATL!!! Good to know, we have family there and go up there a few times a year (I'm in FL) and my children were actually born @ Northside Hospital in Fulton Co., ATL!!!!!!! Be well!!! :)))))))))
Posted 4/21/2011 10:35 AM (GMT 0)
Good to hear back from you lybith. 

The holding breath thing is basically this:  When you lift heavy weights, you naturally hold your breath because you are straining.  That is why the doctor told my husband not to do it anymore.  That is not good for his heart.

Hang in there.  I know what you mean about the concerns.  My husband used to be a mountain climber and bicycle rider but he did it to the extreme...riding his bike across the country, climbing difficult mountains, all while carrying heavy loads, etc. He has had to go through some hard life changes and it was not easy for him to let go of the things he loved.  He has found new passions, ones that involve volunteering and helping others, mostly with Christian organizations...and we are going to start fishing! 

The thing he has going for him is that he is very thin (naturally) and in shape.  He should eat a little better but doesn't want to lose weight (He's always wanted to gain.)

Talk to your doctors about the appropriate time for telling your son.  They will help guide you.  I think he will pleasantly surprise you with the way he handles it.

Hang in there and take it one day at a time. (-:

Posted 4/26/2011 6:33 PM (GMT 0)
can anyone tell me the symptoms of a leaky valve? Thanks.
Posted 4/26/2011 7:12 PM (GMT 0)
  • These are the symptoms but keep in mind, many people do not develop symptoms until the leak gets more severe.  I hope this helps.
  • Fatigue and weakness, especially when you increase your activity level
  • Shortness of breath with exertion or when you lie flat
  • Chest pain, discomfort or tightness, often increasing during exercise
  • Fainting
  • Rapid or irregular pulse
  • Heart palpitations — sensations of a rapid, fluttering heartbeat
  • Swollen ankles and feet
    • Posted 4/26/2011 7:18 PM (GMT 0)
    thanks.  i have had a pain in my chest (similar to my gallbladder attack symptoms before it was removed) and because i was on phen fen and constantly monitored i freak out with every pain.  i called my cardiologist and even last week went to a Pulmonary doctor because i thought it was my breathing.  The symptom feels like i have food stuck in my chest and i may now go to my Gastro doctor.  I know I am stressing all the time with this but am petrified because of the damage phen fen did to me. 
    Posted 4/26/2011 8:20 PM (GMT 0)
    act, I hope you find out the cause soon and that it is something simple that will go away. Try not to stress out. I know that is easier said than done.
    Posted 4/27/2011 5:34 PM (GMT 0)
    hi, got results of PFT and have mild asthma.  Very relieved that it was not that serious.  gave me an inhaler and another one for severe  breathing problems.  Thanks for your support
    Posted 4/27/2011 5:41 PM (GMT 0)
    Hi act,
    Glad it was good news and hope you continue to heal.
    Posted 10/26/2011 3:59 PM (GMT 0)
    Hi all. I've read all your posts and feel for you all. I found this post as I was trying to find out more about leaking valve symptoms as I'm sure I am going to be diagnosed with this. My doctor found I had a faint heart murmur by a routine appointment as I have been having a few racy heart episodes. I now have an echo scan booked for next week but I keep having stitch pains in my heart area then also on my right side of my chest. I also have a cough in the evening which is a symptom too. I can't relax and just want my appointment over with. Im 44 and have four children and a worried husband. Your posts have really helped me and I will keep reading this thread for any more information to help me be prepared. confused confused
    Posted 10/26/2011 4:32 PM (GMT 0)
    Gail,

    Hello and welcome to HealingWell.  It is scary waiting for tests and certainly normal to feel anxious but try hard to stay in the moment and know that your cardiologist would be doing your echo right away if he felt you were in danger.


    During a physical exam, your doctor can  listen to your heart to hear the sounds the heart makes as the valves open and close. A murmur is a swishing sound made by blood flowing through a stenotic or leaky valve. Your doctor can also tell if your heart is enlarged or if your heart rhythm is irregular. It feels to me like your Dr. is compentent and following through appropriately.  If you have any concerns prior to your test please do be your own best advocate and pick up the phone to call for help.

    When you go to the Doctors, keep in mind your there to find out what is wrong and the Doctor is working for you and with you. Take deep breaths and write down your notes about how you have been feeling and questions you have.

    I hope you keep on talking with us here in the forum as we care about you and are here to support you.

    Kindly,

    Kitt

     

    Posted 6/17/2013 4:16 PM (GMT 0)
    I have a leaky aortic valve, have had it for 7yrs since surgery for a dissection.I am 76 now, and just had my echo last week. It came back that my heart is pumping strong, but the valve is still mildly leaking as it has been. I have never smoked, and my weight was 102 at the time of the surgery,but my Mother had the same surgery in 1996, she didn't survive.The problem is I developed chronic bronchitis and it is an on-going thing coughing all the time which is exhausting, and I can't get enough energy to do anything except go to my doctor when I need to. I take NAC and other natural supplements like Co-Q and astragalus It does help, but I have to use an inhaler and a nebulizer which I don't like.I just want to be able to do the normal things I use to do I don't want to take the perscriptions they want to give me for blood pressure because the give me side effects that I don't like.
    Posted 6/17/2013 6:32 PM (GMT 0)
    Libra1636

    Hello and welcome to HealingWell.  I did not see a question in your post but I am going to assume you were looking for info from other members on what else you could do besides take meds for your leaky valve and your low energy.

    One thing I noticed is that your weight is low, however, I am not sure how tall you are and if your male or female.  The weight still appears very low no matter what and perhaps meeting with the dietician to set up a eating plan that provides more calories and healthy foods would bring back some of your energy.

    Also,  I know many people do not like to take medicines but, perhaps, discuss with your Dr. which drug and how it would help your heart may be something you want to look into.

    I wish you peace,

    Kitt

    Posted 6/18/2013 2:42 AM (GMT 0)
    Thankyou Kitt, I am female, and I am 5'3, small frame, I have never been overweight. I was a dancer when I was younger and always kept rebounderactive, but after the surgery, everything changed.I try to exercise on my rebounder, but I have lost weight all over and also my elasticity. I know that it is important to keep the blood pressure down, but so far none of what they put me on works, I did get the Resperate, and I like it very much.
    Posted 6/20/2013 12:06 AM (GMT 0)
    I do eat healthy, and the foods that I eat are not the ones that put weight on. I eat more vegetables, and make a green drink everyday. I don't understand it, but I do use a weight gaining supp. in my green drink.
    Posted 6/22/2013 5:00 PM (GMT 0)
    Libra,

    I understand exactly what your mean about always being petite and having a well muscled body.  Your body does not appear to be utilizing the caloric intake at this time.

    I also understand not wanting to take medications as I struggle with that one but right now I take a lot of meds and I am just 67.  I have been on Inderal for years for BP and I do not notice any side effects but I do not have a leaky valve.

    I want you to be healthy and feel well as you should, your only 76 which is not considered old these days.

    I am going to share with you my issue; it is hard for me to write this without crying but I have not had a good cry yet today. :-)

    December 26, 2011, I lost my energy and was bogged down by fatigue.  This was very depressing as I like to be active.  I saw my PCP who ran a B12 lab test which was borderline low so we add some B12 to my medication list.  I still had severe fatigue and no energy which caused me to feel so very guilty for not being able to just do my housework.

    My next visit was to my Psychiatrist who changed my antidepressant and for 4 months my antidepressant was titrated up until I finally said no more as I felt worse on that particular med.

    In July of 2012 our family went up north to the cabin and all I could do was lay on the couch, no appetite and I was losing weight.

    On August 10th after my annual physical with my PCP I was sent to the hospital for a ultrasound of the pelvis - all was normal.  Just to be on the safe side, my Dr. order a CT of my abdomen as I had some tenderness near my waist but nothing I could not live with.  I was sent straight from the CT Scan to see my PCP as she had the results of the CT Scan which I expected to be normal like everything else.

    My Dr. walked in the exam room and said, " I have very bad news for you, you have a extremely large tumor in your colon, it is cancer and you are nearly completely obstructed"  The rest is history. 

    My reason for sharing my story is to encourage you to be your own best advocate............look for another reason for your low weight and failure to thrive.  It may be something simple or it may me something serious.

    I am a nurse and I ignored the warning sign of fatigue, I except that it was probably my depression................

    I sense that you are a very kind and caring person and I hope you find the answer to your problems.

    Blessings,

    Kitt

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