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Thread: Congenital Heart Defect Twins

  1. #1
    mar4char Guest

    Thumbs down Congenital Heart Defect Twins

    Hi, this is my first time here, and I feel anxious about having to visit this site to begin with. I am an identical twin and for the past 43 years have been relatively healthy, (usual woman and birth horror stories aside) just the usual woes with aging. Last October, I had a problem with my colon and ended having to have major bowel surgery. During this time, my twin had a nasty cold, and developed chest pain. She went to the doctors and was told she needed an echocardiogram. There she discovered she had moderate to severe aortic regurgitation, and aortic stenosis. This is all foreign to me. At this time she told me to go get check out because I too could have the same heart defects. So I did. Turns out all four of my heart valves are insufficient. All four go figure???? What does this mean? Mine range from mild to moderate.

    I go for a cardiac stress test next month. So does my sister. My sister however has been diagnosed with pericardis and her second echocardiogram showed that her tricuspid valve is defective and her doc believes that we both have the same birth defect. I have yet to receive a second echocardiogram to confirm this. We live in different cities. Anyway to make a long story short... I know nothing about heart defects, murmurs, etc. all I know is that since my surgery I am exhausted all the time. I have mild chest pain, pain in my groin, my legs are weak and tire easily, my blood pressure is low, and I am sometimes short of breath when I walk up stairs, (getting old sucks eh!) I have mild to moderate edema and my doctor can?t figure out why. I am cold all the time.. (granted I do live in Canada and it is winter, but still.. all the time) my skin is dry, and right now all my muscles ache, especially in my rib cage. I also find that by the end of a work day (I sit in front of a computer all day) my shoulders feel like they weigh 1000 pounds. (this was not a problem before the surgery) Did any of you have these symptoms?

    I had a problem with the anesthetic during my surgery and my oxygen saturation was really low and I required oxygen for a few days. My blood pressure kept bottoming out and now I feel light headed at times. How do you tell all of this to a doctor without him/her rolling their eyes and thinking you?re some kind of hypochondriac? Is this all in my head? I think the surgery was hard on my heart. Right now I have a normal ECG, however that could change because my sister ECG is not? And hers was normal six months ago. Are there any identical twins out there with similar heart problems?

    Since I am only 43, I feel this can?t be happening? all of a sudden I am falling apart? I would appreciate it if you all could comment on my story and give me some well meant home doctoring advice because my small town doc is out standing in his field tending to mad cows or something. He really hasn?t told me anything yet. I see a cardiologist when I go for the stress test. What should I ask him, and how should I present my symptoms?

    P.S. ever since I was born, I could not do endurance sports. I could not run for more than 3 blocks without getting all red faced and short of breath. Could this heart defect be why?

    Wanting answers In Canada!
    AKA Mar4Char

  2. #2
    Join Date
    Jun 2001
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    snowy - Sharpsburg, Ga USA
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    Hey, Mar, welcome to VR. You have come to the right place to get your answers. You can find more here than your doctors can tell you because valve replacers have been where you are and can relate their experiences to you. We have heard all of your symptoms before - but you are the first grown-up identical twin on the site. Please hang with us to learn - the members will be along shortly and I bet before the day is out, you will have replies to every question you have.
    Ann
    My philosophy:
    No matter where you are, who you are with, what you are doing, enjoy every moment, every day. Blessins.........

  3. #3
    Join Date
    Feb 2002
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    Imlay City, Michigan
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    Welcome, Mar! Just a comment about getting old. You're not the first to ascribe feelings of tiredness to getting old, but it isn't necessarily so. I was very run down before surgery, and thought this must be what getting old is all about. But then after my congenital aortic valve problem was fixed with a mechanical valve, I soon felt ten years younger. Others say they felt twenty years younger. I never could run very far as a child. Now, I can't seem to walk fast enough; there is no shortness of breath whatsoever no matter how fast I walk. I still can't convince my legs that I should take up running, but walking any distance is no problem at all.
    Jim
    Imlay City, Michigan
    AVR 11-9-01, St. Jude valve
    DOB 5-18-55

  4. #4
    geebee Guest

    Thumbs up

    Welcome to VR.com.
    Your post prompts a couple of responses.
    It seems hard to believe you have had the severe heart problems mentioned since birth without them being detected/diagnosed. However, if you were born with minor valve problems it could explain the mentioned exertion problems growing up. If you indeed developed valve stenosis somewhere along the line and had major surgery without prophylactic antibiotics, you could indeed have developed many of the symptoms you describe due to damage to your valve from endocarditis.
    I do not believe you are a hypochondriac. All of your symptoms are valve damage related symptoms.
    HOWEVER, there are other things that can cause such symptoms and I do want to imply that I am a medical professional and am diagnosing you.
    I would urge you to follow up with the cardiologist to determine exactly what is involved and the course of action. It sounds like you have a lot of things in action and just need to follow through.
    Good luck, God bless and please keep us posted. Love to your sister, too.
    Smiles,
    Gina

  5. #5
    Join Date
    Jun 2001
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    upstate New York
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    Welcome to the site-

    Sorry you have to be here, but this is a terrific site with wonderful people who really know their stuff, regarding valve problems and way beyond.
    All of the things you have described could be symptoms of valve problems. If you find that your doctor isn't paying close attention to your laundry list of symptoms, then let your fingers do the walking and call another doctor and on and on until you find someone who can help you. You might have to be very proactive with your care.

    In order to help you sort things out and to help your doctor with diagnosis, start writing all of your symptoms down in a notebook. On each day (make sure you date the pages), write down what is happening to you, and what you were doing, eating, drinking at the time. Do this for at least a month. Then consolidate your notes to one page, even if you have to print them up in a smaller font. Give your doctor the consolidated notes, and bring along your month-long log as backup for these notes, and refer your doctor to the notes, if he/she doesn't want to pay attention to the consolidated notes.

    That will put him on notice that you are very serious about getting answers. You will no doubt, need many diagnostic tests to get to the bottom of all that is going on with you. Once that is all done, you will hopefully have some sort of medical care plan mapped out.

    Please keep in mind that valve problems are diagnosed not only by what the doctor hears and sees with testing, but also what YOU are feeling symptom-wise.

    I cannot stress enough that you will have to become very strong and very serious about getting things sorted out. Always approach your appointments from a position of strength.

    Take this opportunity to read as much as you can on this site. There is a search engine which will bring up many of the posts from the archives. There is valuable info. here. Knowledge is power.

    Best wshes.

  6. #6
    Join Date
    Mar 2004
    Location
    Phila PA
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    Hi!
    How much are your valves leaking? Just wondering cause two of mine are mild and a third is trace. The only one not leaking is my mitral even though they can see it's myxomatous (stretchy). I too have mild to moderate edema and noone knows why. So I was wondering what grade of regurg you have? I went to the foot doctor for a recurring cyst yesterday and he was flabergasted at my edema and other stuff and sent me for all sorts of bloodwork. Seven vials. He's thinking there's some autoimmune issue. Anyway, I'm 38 myself and feel much of the same symptoms as you, mostly since three surgeries I had last year.

  7. #7
    Join Date
    Mar 2003
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    Hi Mar4char,

    Welcome to this site. I hope you will find useful information and support here.
    I do believe you are the first identical twin member who has mentioned valve problems. It will be an opportunity for us to learn from you as you find out specific information in your cases.

    As with everyone who is newly diagnosed with valve problems, it is very important for you to gather copies of any test reports and copies of consultation reports. Keep these together in a personal file. It will not only be a help to you as you learn more about valvular problems but will also same a lot of time when some information is needed at a later date.

    You and your sister may have started out with the same congenital defects but it is possible that your bodies have handled it differently from that point forward. It is not unusual that valvular heart problems are first diagnosed when there is another illness or surgery that puts unusual demands on a heart and the lack of reserve makes it apparent that something else is present.

    There is something else you may want to know about multiple valve problems. Although each valve may only malfunction mildly or moderately, the combined effect can make you quite symptomatic. When multiple valves are involved it is especially important for you to be under the care of a cardiologist who is an expert in this area.

    If you haven't already spent any time on our REFERENCES forum then I highly recommend you do so. There is a link to the ACC/AHA guidelines for the care of patients with valve disorders. It has a wealth of information there to which many of us turn to for answers.

    I'm glad you posted and hope you feel right at home here. I would love your sister to also join in if she feels so inclined. You may have noted that this is a very active on-line family.
    Betty(bvd)

    Rheumatic Heart Disease
    St.Judes Mitral Valve
    Heart Port procedure
    Dr. D.Glower, surgeon
    Duke University Hosp. 8/25/03

    John 1:5 The light shines in the darkness, and the darkness has not overcome it.

  8. #8
    Join Date
    Mar 2004
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    Phila PA
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    Betty,

    I don't mean to hijack this thread for myself but I'm so glad you said that about multiple leaking valves can make you symptomatic. I meant to ask that when I posted earlier. If two mild leaks can equal one moderate or severe. I'll be interested to see if I get anymore answers from other's issues.

    GO EAGLES!!!!!!!!!!!!!

  9. #9
    Karlynn Guest

    Default

    Welcome! You have found the greatest place to "hang out" as you figure out your issues. I don't have too much to add to what the others have already said. My only important addition is to tell you to make sure you have a doctor who is not treating you like a hypochondriac. Some doctors will listen to women with several complaints and make the wild assumption that they are letting their minds run away with the idea of a problem. I speak from personal experience on this and the doctor who thought I was a hypochondriac was very wrong and came close to taking my life with a drug he prescribed to "shut me up". My experience is kind of a Worst Case Scenerio, but I'm telling you in order to illustrate a point.

    Remember that the doctor works for you. You are your best health care advocate. So don't hesitate to ask questions and to question the responses.

    Welcome to the family.

  10. #10
    mar4char Guest

    Default

    Quote Originally Posted by geebee
    Welcome to VR.com.
    Your post prompts a couple of responses.
    It seems hard to believe you have had the severe heart problems mentioned since birth without them being detected/diagnosed. However, if you were born with minor valve problems it could explain the mentioned exertion problems growing up. If you indeed developed valve stenosis somewhere along the line and had major surgery without prophylactic antibiotics, you could indeed have developed many of the symptoms you describe due to damage to your valve from endocarditis.
    I do not believe you are a hypochondriac. All of your symptoms are valve damage related symptoms.
    HOWEVER, there are other things that can cause such symptoms and I do want to imply that I am a medical professional and am diagnosing you.
    I would urge you to follow up with the cardiologist to determine exactly what is involved and the course of action. It sounds like you have a lot of things in action and just need to follow through.
    Good luck, God bless and please keep us posted. Love to your sister, too.
    Smiles,
    Gina
    Hi Gina,
    Thank you for your response. I too find it hard to believe that I was not diagnosed at a younger age. However, my twin and I were the 5th and 6th children of 8. As a child I did not go to the doctor?s office often. My mother was too busy I suspect, but she also had other problems to deal with. We have Cystic Fibrosis in our family, a brother and a sister, and my brother took up most of our doctor office visit time as children. Nevertheless, I had been told on several occasions growing up that I had a heart murmur by different doctors. "Do you know you have a heart murmur?" they would say. I would say, ?Yes, it has been mentioned from time to time." and that would be the end of it. So it is not surprising that I was never properly diagnosed.

    I will get my sister to write here too, she works in the medical field and is much more knowledgeable about her heart problems that I am with mine. I will not have a definitive answer until I do the stress test. That I am dreading because my legs have been so tired lately as I mentioned before. I feel like a wet dish rag lately and my complaints to my doc are falling on deaf ears. Hopefully I will get some answers when I see the cardiologist. I will keep you posted so I can get your opinion on these matters of the heart.

    Thanks again,

    Mar4Char

  11. #11
    geebee Guest

    Thumbs up

    I find it so frustrating when I hear of problems with undiagnosed medical issues. I am an OHS survivor today because the rheumatic fever I had as a child was not diagnosed. I guess high fevers were not considered something to worry about growing up in the fifties and, thus, my rhuematic fever went untreated. The subsequent leg and knee pains were tagged "growing pains", another common BS diagnosis of the time.
    Therefore I went through braces and major dental work without antibiotics. By the time I was diagnosed with "a murmur you were probably born with and nothing to worry about", it was too late. The next diagnosis was mitral valve disease and the rest is part of my life history. It didn't have to be. I have dealt with a bit of anger over this but I have survived and am relatively normal (physically anyway, the rest depends on who you ask - LOL).
    Don't leave a doctor's office, during this quest, unless you have all your questions answered. You MUST be agressive (not rude, of course, just take charge) or you will be brushed off and end up being the victim of today's medicine which is fast in, fast out due to insurance companies.
    Sorry, if I am ranting a bit and sound cynical. It's just that you must go in knowing all this if you are to get properly diagnosed and "fixed".
    Best of luck and smiles,

  12. #12
    Join Date
    Jun 2001
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    upstate New York
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    I suspect that you can feel a theme here. Many people on this board have had the unfortunate experience of having "deaf" doctors. It has made us all quite proactive, patients and their spouses as well.

    Women can get short shrift. Most of us have been brought up to be nice little girls and not to make waves or upset anyone by being bold or aggressive.

    It's not a good lesson for today's world. It's too fast paced and many people with medical problems get brushed off. Those of us who are still "make nice" people suffer. And some have come to the brink of death with this kind of thing.

    Turn yourself into a no nonsense patient. If you have to, go to your appointments wearing a black business suit, and with notebook in hand, and take notes. Better still, bring a recorder and ask if you can record the appointment. But keep your notebook with you, just in case the answer is no.

    AND the very most important thing is to get yourself a crash course education on your own particular heart problems. Use this site extensively, use the entire Internet, read, read and read some more. Come here often and ask lots of questions.

    If you go into the appointment with knowledge, you will get intelligent answers, and you'll be able to understand them, and ask intelligent questions right back. Insist on finding out just what your doctor is going to do about your problems. Ask about testing and how often that will take place. Ask about what parameters your doctor will be looking for.

    Be very self-protective.

  13. #13
    Join Date
    Feb 2004
    Location
    Central NJ
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    You don't sound like you're a hypochondriac to me. Your symptoms seem real enough and you have a valid causation in line with those symptoms. It sounds like you have good reason to need to understand more of what's going on with your heart. And at your age, "old age" is not a big factor in fatigue. Your fatigue is very likely due to your heart issues.

    However, you may not any get definitive answers from a stress test. Here's something from an earlier post of mine, specifically about stress testing:

    I was just going through the ACC/AHA Guidelines for the Management of Patients With Valvular Heart Disease, and came across this:

    "Exercise testing in adults with AS has been discouraged largely because of concerns about safety. Furthermore, when used to assess the presence or absence of CAD, the test has limited diagnostic accuracy. Presumably, this is due to the presence of an abnormal baseline ECG, LV hypertrophy, and limited coronary flow reserve. Certainly, exercise testing should not be performed in symptomatic patients."
    The ACC is the American College of Cardiologists, and the AHA is the American Heart Association. The red highlighting for effect is mine. You are certainly a symptomatic patient.

    You are already aware that your tolerance for exercise is low. If it is your GP that ordered the stress test, you can mention this quote and point him to http://www.acc.org/clinical/guidelines/valvular/toc.htm . I am not a doctor, but it sounds like this test may not be appropriate for you (or your sister). My thought is that if the GP still wants the test, appeal to the cardiologist. You might want to mention some concewrn to the cardiologist and ask if what he would see in a stress test would really be of more value than the results of a standard echocardiogram.

    Endocarditis is an infection, and you wouldn't share that with your sister unless you had each had the bad luck to be separately infected during your lives. Not impossible, but also not likely.

    You should get copies of your test results. Your symptoms could be a result of a bicuspid aortic valve and heart enlargement, or a combination with other congenital valve issues, or even childhood illness. But there is not enough information to hazard a real guess. Your sister may also have a bicuspid valve. Oddly, bicuspid valves often are not found until fairly late in life, when they start making some noise, or when other health circumstances make them apparent.

    It's a lot to swallow. Many of us felt healthy as a horse when we were first told about our valve problems. I was out back in the snow, splitting stumps into firewood with a heavy maul when the doctor called us with my original results. How could I possibly have had a heart problem? And yet, I did.

    The good part is that the results of the efforts of your doctors and surgeon usually produce a very improved quality of life for you. I was 51 when I had my AVR, and I felt younger than 40 afterwards. Fatigue went way down.

    Betty, sounds like these techs are using "insufficiency" in place of regurgitation, but I still stand by my definitions.

    Best wishes,
    Bob H

    "No Eternal Reward will forgive us now for wasting the dawn..." Jim Morrison

    Click here to View the Glossary of VR Terms and Acronyms

    I am not a Medical Professional. Aortic Valve Replacement (Medtronic Mosaic) on 4/6/04, at Robert Wood Johnson UH in New Brunswick, NJ. AVR again (St. Jude Biocor) on 08/25/09 at St. Michael's MC in Newark, NJ. Both performed by Dr. Tyrone Krause, a true Zen Master Mechanic in the world of valve replacement surgery.

  14. #14
    mar4char Guest

    Smile Thank You All!

    Hi,
    Thanks you all for the wonderful responses. I will definitely check out all the information you have here about mine and my sister?s heart conditions. I feel better now knowing that what I am feeling is real and there could be a correlation between my weary tired legs and leaky heart valves. I will make sure I ask a lot of questions when I go see the cardiologist. I am a babe in the woods when it comes to my own health issues. I was strong and was able to ask a ton of questions when my husband has his lung transplant. (He died two years post op) Having to deal with my own health issues is disconcerting to say the least. But I will make sure I get my answers before I leave a doctors office from now on.

    Thanks a Bunch!
    Mar4Char

  15. #15
    McCln Guest

    Talking

    Hey, I have to put in my two cents in here also. I was born with congential heart defect, a defective arotic valve, which had a leak called heart murmur. Had what was called a repair, they scraped some of the disease stuff out and patched up. Years later, had valve replaced and feel a lot better. Birth defects are easier to catch nowadays. Yesteryear, they did not test like they do know. Mine was caught at three months of age in 1965. So that tells you something. I was slow at age 8, when first surgery happened. I was tired, no energy, wiped out. Years later, happened again, after told I needed the valve replaced. I was 36 at the time. I am now reaching 40, valve replaced and feel better. I wish you and your twin luck and take great care of yourself. Be sure when you do have a question of unsurity, come in anytime or just to let off frustration. Welcome and come back soon.

  16. #16
    prttyprttyprncss Guest

    Default Newbie with you!

    Greetings Mar4Char!

    I, too, am a newbie here. I was just diagnosed with BAV & Mitral valve prolapse. I had my first visit with a cardiologist earlier this week and now have a month-long companion called the King of Hearts monitor!

    I always felt like I was relatively healthy, especially after losing 50 lbs through diet and exercise! I had a lot of the same symptoms as you.. and when I first started working out, attributed all my aches & pains to just being out of shape for the previous 15 years. I never had any endurance when it came to sports. I was a cheerleader in high school and remember just being exhausted and red-faced by the end of a football game. I never really complained because I didn't want to be accused of whining! When I would mention different symptoms to my doctor he'd just say "you're burning the candle at both ends, you need to slow down" (I was a single mom and worked 2 jobs)...

    When I went to see the cardiologist (thanks to the folks here) I had a long laundry list of items that I decided I'd mention because I felt it was more important to get something out there rather than have it overlooked. She sent me a questionaire before I went and it asked a lot of questions about symptoms and such and that helped also.

    So, there you have it! I wish you and your twin all the best and toss all your q's out there for the been there's. They are a wealth of information and are always supportive and kind. And if things get too scary, scoot over here and this newbie will hold your hand!

    Shelia

  17. #17
    Join Date
    Jan 2005
    Location
    Alberta, Canada
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    Red face Char2Mar

    undefined

    Hi Mar
    (New to this site too)
    Its me Char, your wombmate. Read you message and thought I can make some light with the rest of the people out there. I am the twin of Mar. I was just recently diagnoised with Morderate/Severe Aortic Valve regurgitation, Mild Mitral Valve Regurigitation, Trace Plumonary Valve Regurgitation and Trace Tricuspid Valve Regurgitation. The echo shows that I probably have a bicuspid aortic valve with a anterior raphe and mild aortic valve stenois. Up until Nov 2 of 2004 I thought my health was A1. I was at work and started to get crushing pain in my chest. I went to the Doctor's office next door(I work in a Medical Lab) and she checked me out and told me to go to the ER imediately. There they did a EKG, dDimmer test for blood clots and a chest xray. All was relatively normal. They did suggest however that I get an Echo done. So I went to the GP and she listen to my heart. She thought that perhaps I had a MVP and arranged for an echo. A week later I had the echo and the techs could not believe that I had never had one before. I got the above report and was sent to see a cardiologist. He did an EKG and listens to my chest. He said my chest pain was caused by Pericarditis and he put me on anti inflamatory drugs. Said that he wanted another echo before he cut my heart open and that I also need a stress test. (Which is scheduled in Feb, 2005) then walked out of his office before I could ask him a question!Needless to say I was not impressed by this doctor. I took the meds but the pain in my chest did not go away. It has been over 6 weeks from the time I saw him and my condition has only gotten worst. I an experiencing chest pain daily. I am extremely fatigued. I have palitations daily. Becasue I work in a lab I can have an EKG done when ever I like. Which I have been doing weekly. I went from having a borderline EKG, (left axis divation) to left ventrical atrophy in a months time. I have Bigiminy arrythmia (supraventricular) constantly and have also had bouts of bradycardia and tachycardia on occaision. I am experiencing SOB during light exertion and I have had many dizzy spells. Basically I feel like crap. I know that eventually I will need a vavle replacement but when I really do not know. So what I would like to know is, do you think this is an acute case. I did have the flu (influenza B) in Septemeber and delveloped pnenomia. That was really the beginning of my demise. I would also like to let you know that I had a daughter who was born with multiple heart defects, and she passed away at age 6 weeks during a cardiac catheter. I also have a daughter who had a PDA at birth but it closed at age two months on its own. I had a nephew who also had a PDA but died at ten months during his operation to close it. Seems heart defects run in the family. My twin has four leaky valves too but hers are only mild to moderate at the time. We both are symptomatic. How would I go about getting quicker medical attention? Do you think I can wait until next month. I didn't cancel my next echo or the stress test with this cardiologist...even though I dislike him. I don't want to have to wait for another referal. That may take awhile.

    Any advise?????

  18. #18
    geebee Guest

    Thumbs up

    Char,
    Welcome to the site also.
    Well, you certainly seem to have just about everything one can have when it comes to heart problems. I am sorry to hear about you losing your daughter - no one should have to go through that and then still cope with more family members having problems.
    I am not a medical professional and I would not presume to try and determine how serious your problems are. You ask if your problems are serious enough for surgery and I will simply share what my cardio and surgeon told me before my first surgery. They said that I needed surgery and the timing would be when I decided my symptoms were no longer tolerable and were distupting my lifestyle.
    Once I got to that point, the surgery was scheduled. Of course, I was monitored frequently before that point and I am sure if things became dangerous THEY would have decided for me but I made the call.
    So my point is, if your life is not how you feel it should be and your symptoms are making you miserable, you should strive to find doctors who will "fix" you.
    Best of luck and God bless.

  19. #19
    Join Date
    Jan 2005
    Location
    Alberta, Canada
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    94

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    Aby,

    Thanks for your reply and I will certainly take your advise. I am not sure if I still have pericarditis or what????? All I know is that I feel quite ill. It it also very disheartening to see that my sister is having many of the same problems as me. Maybe the flu we both had was the precurser to our current health problems. I will be an avocate to my own health. I am not worried about Health Care expenses because I am covered with Provincial coverage. No extra expenses out of my pocket, the only problem is in Alberta it takes so long to get something done, and the Doctors all have to follow a certain protocol when it comes to ordering test and performing surgeries. I learned that out quickly when my daughter was fist diagnosis with a coaortation of the aorta and a hypoplastic aortic arch. Had she been diagnoised at birth she may of had a better chance and the outcome could have been different. As for myself I will be determined to follow this through. I don't feel right and I can't handle being tired and sick all of the time. I make a lousy patient.LOL.
    Beside I don't have time to be sick, I have 3 small children to take care of. Anyways hope to talk to you again.

    Take care Char.

  20. #20
    Join Date
    Jun 2001
    Location
    snowy - Sharpsburg, Ga USA
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    Welcome, Char, to VR. A great place to be. We are honored to have both of you. In this site, it is a learning experience for all who come here. We learn from you and you learn from us. You are the first grown-up twins to join us. My cousin's great grandchild had a 'hole' in her heart repaired when she was 3 days old - she is a twin. The other twin appears to be fine.

    If the two of you live near each other, would it be helpful for you to both go to the same doctor? They might take more interest since you are identical twins and how many doctors get to treat identical twins. You may get special treatment - and attention.

    Please stay with us and members will walk all the way with you. Blessins.....
    Ann
    My philosophy:
    No matter where you are, who you are with, what you are doing, enjoy every moment, every day. Blessins.........

  21. #21
    Join Date
    Nov 2002
    Location
    southern California
    Posts
    447

    Default Re. Your Bicuspid Aortic Valve Disease

    Dear Mar and Char,

    Perhaps I could just tell you that I recently was in touch with another family where identical twins (brothers in their later 40's) have this condition. The bicuspid aortic valve is the most visible sign of a condition that those pioneering in this field understand to be a genetically based connective tissue disorder, with the most serious affects in the heart valves and the aorta.

    What you both describe is recognizable as various aspects of this. You will need to be strong advocates for yourselves, and prepared to provide information to your medical providers. (I know one woman who spoke before a legislative session in her province as part of her efforts to get the aortic surgery she needed!)

    I want to give you some informational links. It includes a medical paper from the U of Toronto which may be helpful, since you are in Canada. This paper focuses primarily on the bicuspid aortic valve and the aorta, but is a good start in sharing information.

    There are a couple of very important points:
    1) When pain in the chest cannot be linked to other causes (medicine for pericarditis did not help), the aorta should be suspected. The aortic tissue may not be normal (the coarctation mentioned is another example of how this condition can affect the aorta), and the aorta can feel pain when its walls are under pressure. This is serious, because aortic tearing or rupture is life-threatening. A CT scan with contrast (or MRI with contrast if available) is the test used to examine the aorta. Also, keeping blood pressure low lessens the stress on the aorta. I hope you can have an aortic scan soon.
    2) Pneumonia can be very hard on those with this condition. My husband had pneumonia, which in hindsight we feel was caused by a small amount of fluid gathering in his lungs as his heart valve failed (it was not enough to bother him, he had no symptoms!), making a moist inviting place for bacteria to grow. Once the pneumonia cleared, he was extremely sick, in full blown congestive heart failure. Replacement of his bicuspid aortic valve at that time saved his life. Later he had aortic aneurysm surgery, and today he is monitored carefully because we do not want any more surprises from his heart valves or remaining aorta!
    Here are the links

    Paper from U of Toronto
    http://circ.ahajournals.org/cgi/cont.../106/8/900?eaf

    http://www.bicuspidfoundation.com

    http://www.cedars-sinai.edu/aorta

    Best Wishes,
    Arlyss
    My husband is the patient
    AVR for BAV, critical stenosis with heavy calcification, April 1990
    Ascending aortic aneurysm, complete resection under Total Circulatory Arrest, May 2001
    Stroke due to valvular strands, November 2005
    AVR - mechanical valve replaced with tissue, February 2006

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