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  • 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
    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.........

    Comment


    • #3
      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

      Comment


      • #4
        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

        Comment


        • #5
          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.

          Comment


          • #6
            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.

            Comment


            • #7
              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.

              Comment


              • #8
                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!!!!!!!!!!!!!

                Comment


                • #9
                  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.

                  Comment


                  • #10
                    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

                    Comment


                    • #11
                      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,

                      Comment


                      • #12
                        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.

                        Comment


                        • #13
                          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

                          [B] [URL="http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314"] Click here to View the Glossary of VR Terms and Acronyms[/URL] [/B]

                          [B]I am not a Medical Professional.[/B] 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.

                          Comment


                          • #14
                            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

                            Comment


                            • #15
                              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.

                              Comment

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