As a mother of a child affected by Ebstein’s, I would be interested to hear the views of any adults as to what age they learned of their condition, and how (or if) they as an adult attempt to explain what Ebstein’s is to friends and collegues etc. Is it an unhelpful label (other than medically) in the sense that most people haven’t heard of it, or do you just say “I have a heart problem”, or something similar? What things cause the most frustration?
Thanks
Caroline
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I am now 39. I have known I’ve had ebsteins since I could remember. I had heart surgery a year and a half ago and am doing very well.
I used to always say I had a heart condition. Ebsteins is hard to explain so I stuck with the general explanation.
From a frustration standpoint, I got most frustrated at not being able to physically keep up with my peers.
Comment by aliheat — February 10, 2009 @ 5:13 am
When I was 10 I had open heart surgery for repairs. I was not told until I was in my late 30′s that I had Ebsteins. I don’t believe my parents were aware that I had Ebsteins. All they knew was I had a little valve problem which they didn’t believe would effect my life in anyway. They were told after the original repairs that I was “normal”.
I want to encourage all adults living with Ebsteins to join a support network. The group is only open to those who actually have Ebsteins. It’s the only group of its kind that I know of.
http://health.groups.yahoo.com/group/EbsteinsAnomaly_Adults/
Comment by Shosh — February 10, 2009 @ 2:58 pm
Hello everyone,
I’m 54 years old and just found out I have Ebstein’s 2 years ago during a pre-op EKG for an unrelated condition.
I have been told all of my life that I had a “heart murrmer”,but it never was checked out futher.
To say I was suprised would be the understatment of the year. After the minor condition was treated, I was sent to a cardioligist for more test and found out that I also have an atrial septal defect and a accessory nerve pathway in my left atrium.
While all of this is very difficult to explain to others, I know you’ll understand.
It also explains why I could never play sports or do a lot of running etc. when I was a child.
Any way to make a long story short, I have been Blessed to lead a very normal life and have had several different jobs over the years, so I know there is hope.
When I try to explain my “condition” to others they have a hard time understanding most of it except when I tell them I have a hole in my heart. Most people have an idea of what that is. But that is about as far as their understanding goes. And somtimes family members, as loving as they are, can be not quite as understanding as well, because you for the most part “look” normal.
I have had the ASD repaired without open heart surgery using a septial occluder, it’s a device inserted via heart cath. And I also have had to have a pacemaker inserted.
As aliheart said it does get frustring beeing tired most of the time and wondering if every little twich or palpation is something to worry about.
As I said, I’ve been blessed to have lived this long with out any major problems or surgries and Thank God for every day. There is quite a bit of information on the internet about Ebstein’s and the info on Mayo Clinic’s is very helpful.
What really rips my heart out is when I think of the parents of these precious little ones who are diagnosed early. I can’t imagine what they’re going through since both of my parents had passed on before I was diagnosed.
The information on one site I found says older observational data says 5% of paitents live to be 50 and the oldest lived to 85, so I’m shooting for 86.
Forgive me for being so long winded, but just writing this has helped me as well.
I do work fultime as a computer technician, and part-time as a radio disc jockey and even sing in a gospel quartet. So stay as active as you can.
Thank you for creating such a great site about our condition and I know it will help many others as well.
God bless
Comment by Jim Collins — February 10, 2009 @ 3:52 pm
Jim
Thanks for your lovely posting. It made the whole last 5 months of work to get this site up worthwhile. It also gave me a lot of hope for my little girl, as you suggest it does rip your heart out but actually doing this site has made me feel a whole lot better.
Comment by Caroline (Florrie's mum) — February 10, 2009 @ 6:10 pm
Hello
) pace maker and a few other “bits and bobs” done, I’m 36 and I feel great most of the time. Just been told that I have a few little clots in the collection chamber but the warfarin should sort this out fingers crossed. must stop rambling on now and get on with some work.
I was diagnosed at 12 – 13,and it was good to know why I could not keep up with the others, why I felt sleepy (and fell asleep a few times at school) oh and the trips to hospital, a 13 year old boy getting all the attention from the young nurses. Well ok it was a bloody shock, my cardiologist at that time was a “if it isn’t broke don’t fix it” type which worked well for him, lucky for me he left and I am now looked after by a great team at LGI, I was walking home afetr dropping my daughter off at school I knew I was not well but I just did not want admit how bad I was, my heart was pounding well over 160 bpm resting, I was taken to my local hostital where a nurse told me the tricuspid valve is now known as the mitral,I didnt have it in me to set him right, glad they only kept me for a day if thats wat they think my heart stopped 7 times that night. I have now been fixed, new valve (mine was beyond economical repair
Great webside by the way.
Comment by sean — February 23, 2009 @ 4:53 pm
Hi
I’m 43yo,mother of 2 girls ( neither have heart defects).
I passed away (but revived) at the age of 2 weeks. At that time it was noted that I had an ASD and WPW and something that they couldn’t quite work out ,later verified a few years later as EA.
My whole childhood I struggled with phyiscal activity but that’s really not that much of a problem when you really don’t know what you are missing (having never experienced differently).
Other kids would ask what was wrong , i’d just say i had a heart problems.
As i grew older and understood more of what was happening to me, when people asked what was wrong i’d say I have a hole in my heart, A valve that didn’t form properly and extra electrical pathways telling my heart to beat incorrectly. The usual response was oh. Some would ask what it felt like so I’d tell them. it’s like a marathon running pushing way past their limits (unfortunately on a too frequent basis), where he get to a stage where he is fatigued, short of breath, that ends in a massive headache, and the need to rest for a number of hours. I learned that it was the WPW that amphilfied the effect. My heart a dozen times (plus) a week would race at over 200bpm. So the heart and valve were in serius stife.
Anyway, since then i’ve had a stroke, a heart attack, had an ASD repair, WPW removed, rightside downsized, and a valve replacement.
All is fairly good these days. due to scarring I’m on a number of drugs and need a pacemaker to help with AF.
The frustrating thing is there are times when I really am unable to physical cope with activities but because I look fine, people don’t always understand. I now say tp people I have heart problems and leave it at that.
Only if they really want to know do I tell them my true status.
Now that I have waffle on and bored you all.
I wish you all well
Comment by jacinta — March 14, 2009 @ 2:02 am
I was diagnosed with Ebstein’s at an early age, 6 or 7, when my pediatrician heard a murmur and sent me for further testing. At that point, we were told that it was a just a minor thing, and aside from taking antibiotics prior to a dentist appointment, there was nothing to worry about. I didn’t see a doctor regularly for this and revisited it only twice, at ages 15 for a sports physical and 21 to complete a SCUBA diving physical, neither time with a specialist. In these instances, it was frustrating to try and explain what Ebstein’s was to practitioners unfamiliar with the condition.
I have always been very active- was competitive in sports in high school, spend a lot of time hiking, biking and have been working as a SCUBA diver for almost 10 years. So imagine my surprise, when at age 25 while renewing a SCUBA physical, I was told by an incredibly tactless cardiologist that I was a ‘freak’ who would never have children and probably should have had a heart attack walking down the street and should definitely not be SCUBA diving.
At that point, I chose to have a second opinion from an congenital heart specialist at Stanford Medical center. I was told that my Ebsteins was a not minor, but a textbook case, and that although I claimed to be asymptomatic, that this was most likely not the case. After a whole gamut of tests, they finally believed me, though every year that passes (3 now), my doctor likes to warn me that symptoms are just around the corner, and that ‘someday soon’ I’ll need a new valve. I have continued to be active, and SCUBA dive. My family knows of my condition, as well as those who I work and dive with (just in case!), but much more on a general level.
I like to hope that I’ll continue to defy expectations, but I do find myself slowing down some these days. The best I can do is be prepared and educated for what may come!
Comment by aj — March 24, 2009 @ 6:54 pm
Hello Caroline,
I hope this message finds you well.
I was born with EA, and have three Tricuspid valve replacements over the years; and I do have a fourth pending.
I have always found it important to mention my condition as EA to the medics as, for sure, of all congenital valvular anomalies and their associated malformations, EA is outragously rare, and by giving the medics the heads up as it were, you are simply making them aware that they (medics) need approach this ‘heart condition’ from a position of knowledgeable awareness!
The EA ‘label, in my experience, has proved valuable is this regard.
I hope your child is doing well Caroline. I truly believe in letting those whom matter the rareness of your childs condition, often ensures that he/she will get the most appropriate attention from medics.
My very best wishes.
Richard. london. (National Heart Hospital and Royal Brompton)
Comment by Richard — August 2, 2009 @ 8:29 pm
hello, i am charlie ( as you can see) i have been diagnosed with ebstein’s anomaly since the day after i was born. i was expected to have an operation at the age of nine, but four years on i have had no operations or medication. although the doctors and nurses have been quite concerned over the last 2 years i still have been healthy. on wednesday i’ll be having my aannual checkup and hopefully get some results from my trip to G.O.S.H (great orman street hospital).
thanks
charlie
p.s sorry if some of this is bad im not good at english, lol.
Comment by charlie — August 3, 2009 @ 7:46 pm
Wow, am I happy to have found this site. My name is Anne and my daughter, Marjorie, who will be twelve in a few weeks just had her tricuspid valve repaired 9 days ago. I’m writing from outside of Tulsa, Oklahoma and were blessed enough to have a children’s hospital that landed a really wonderful cardio-thoracic team of surgeons. Took two attempts to repair it. She was out of ICU in 3 days — home after 5 (of course out of school for several weeks). She has an echo and an EKG tomorrow. I am thrilled to know of this website and to realize that I’m not “alone”. As for the label of “Ebsteins” — we’ve mainly lived in larger cities (she was born in Seattle, then 8 years in Minneapolis/St. Paul, now Tulsa). I’ve always just searched for pediatricians who know what Ebstein’s is…not always easy (lol). Thank you for starting this group. God bless you all…
Comment by Anne — August 20, 2009 @ 11:26 pm
Caroline,
Great site.
I am a 28 year old female, and I was just diagnosed with EA along with an ASD today. My doctors always called it a heart murmur, they said that it was a possible VSD that should close ( this was when I was a child). The most upsetting was to see my mom cry when the echo confirmed the diagnosis. SHe was hoping that it closed up, like the doctors said it would. So you could say I am a little confused and learning about this new diagnosis. So I haven’t tried to explain it yet but I will let you know when I do. I am healthy in the exception for shortness of breath while exercising and oh yeah always walking the mile thruout my school years ( I could never figure out why I was slower than the rest of the kids, sure am glad I know now), some swelling and fatigue in my ankles and legs, and oh yeah I sleep alot now. Well I dont quite know the severity yet, I have to go in for the stress test to find that out. The cardiologist said that I will most likely require open heart surgery at some point, I guess it all depends on the that test. If any of you have any advice or precautions for me, I would love to hear it.
Thank you for such an amazing site and God Bless You and your little one.
Comment by Venus — August 27, 2009 @ 6:42 am
Hiya
Must have been a shock, see similar posts (newly diagnosed) for people diganosed in their 50′s. My guess is that if you are functioning quite well at the moment, then no intervention will be required, but if it is effecting your quality of life that will be an important factor. If you have got to 28 then it must (I’m guessing again) be mild or moderate, so try not to worry too much until you get more information. There are some progressive interventions compared to 30 years ago, and lots of stories on this site that are very positive. You don’t say what country you live in?
Best wishes to you and hope that all will be well. Please keep us updated.
Caroline
Comment by caroline — August 28, 2009 @ 1:24 pm
I am twenty years old and have been living with mild Ebstein’s Anomaly for my entire life. I had surgery to repair an ASD when I was two. I have found that telling people I have Ebstein’s Anomaly is useless as many people do not know what it is. I generally just say I have a heart condition and if they probe further,I tell them that my heart is deformed and doesn’t pump blood well. Most people won’t understand the specifics so I just give them the general idea. If they want to know more they are free to ask for answers,which I tell them. Then again,I am very comfortable with my condition and how it affects me,if you are not comfortable in sharing all the grisly details then domn’t.
Comment by Amanda — November 24, 2009 @ 5:26 pm
Hi everybody I’m mother of one and half year baby boy he was diagnosed Ebstein’s Anomaly when I was pregnant in the 8th month through the 3D. It was a big shock for me and his father but we have faith in god and everything happens for a reason and for our good I want to share with parents who has the same case their knowledge and the best opinions they reached.
Comment by alia — January 7, 2010 @ 7:16 pm
Wow, although I hate that others have this problem, I am glad to hear about so many people doing well with it. I am 52 now and was diagnosed at 3 years old. My parents were told I would not live past 12 or 13, so they never told me anything except I had a heart problem. I did much better than doctors expected and did not have surgery until I was 25 years old. My surgeon was Dr. Gordan Danielson from Mayo clinic and from what I was told was number 82 to have this surgery done.
They were able to repair the value and reduce the size of my heart. I have done very well since, had a child and and just on one medication for irregular heart beats. Had to have an ablation for racing heart, but they were not able to correct the irregular beats, so I am still on the rhythm meds.
Even though my parents were given a bleak outlook for me, they had faith and said they could not believe I wouldn’t come though. My doctor here at home told my parents, “doctors are not gods and that only GOD knows when”. He was definitely right. I also read the reports about most people only living into their 50′s. Well, I hope to keep going longer and maybe we can raise that statistic.
Comment by Rhonda — January 21, 2010 @ 5:02 am
Hello Rhonda
I think your story is very heartening (no pun intended)for us all. See Jim’s comment up the top – he is aiming for 86.
Thanks for sharing your story
Caroline
Comment by caroline — January 29, 2010 @ 5:37 pm
Hello,I am 65 next week. When I was 11 and had a medical before going to senior school my parents were told that I had a heart murmour and that I must not go swimming as the shock of jumping in cold water could be fatal. I carried on as normal apart from swimming until I came to be pregnant with my first child. A heart defect was found and I went through several tests as they thought I had a hole in the heart. However it was found that I had Ebsteins Anomoly. I went on to have two further children and I have not had problems. I still see a consultant on a yearly basis for checkups. I go abroad twice a year for holidays and keep active with grandchildren. Hope I can still say all this when I reach 90.
Comment by ann — April 9, 2010 @ 11:11 am
Hello, I will be 55 years old this year. I was diagnosed with ebsteins when I was 10 years old in 1965. I was a very sick child. I had the first surgery in mississippi for ebsteins. Dr. James Hardy did my surgery. He was a world renown surgeon. I had the “birdcage” valve put in with the pingpong ball in the middle. That valve lasted me until I was 31 and then began leaking again, causing my heart to become extremely larger. I had my second surgery in 1986 and the valve was replaced with the “pig valve” which I still have. I was told that this valve would last 10 years but it is still going strong after 24 years. I have lived a normal life that got off to a very rocky and difficult start.
Comment by jean peacock — April 29, 2010 @ 2:20 am
Hi,
My name is karen and I was born in 1950 as a “blue Baby” and my parents we told I would not live 2 weeks. I have severe EA. I never was allowed to go to gym classes in school, and was told I could never have children. Well that was 60 years ago and I have two beautiful sons, and I used to ride a bike 35 miles a day. I have just started having problems in the lst month, but I have been on lanoxin since age 11. All in all I have had a pretty good life and surprised every doctor that has ever seen me. Good luck, my advice is smile every day and just be happy, someone else is responsible for my being here and staying here for so long.
Comment by Karen Paro — May 12, 2010 @ 7:14 pm
I am 61 years old and getting opinions about where to have surgery for ebsteins anomaly. I was born a blue baby and have wpw syndrome and ebsteins anomaly. The right side of my heart is enlarged greatly and my tricuspid valve is too low in my heart and leaks a lot. I’m now trying to find out where the best hospital and doctors are to have surgery to repair the valve and to reduce the size of my heart. I also have a hole between the 2 top chambers of my heart. Any help would be appreciated in finding the best doctors and hospital.
Comment by john boevers — May 17, 2010 @ 4:46 am
Hi
John
Would be good to know which country you are from?
Thanks
Caroline
Comment by caroline — May 17, 2010 @ 12:49 pm
HI. My names Will I’m 35 years old. When I was born I was diagnosed with a hole in my heart and leaky valve. I was always sick as a baby and child and started to grow out of it by the time I was 12 or 13. I have been fine for all these years. I even seen a cardiologist when I was 16, he gave me a clean bill of health and said I just have a murmur. Then two months ago I passed out after carrying something. I took it as it was just really hot outside. I was fine then for another month then I was carrying something again and I passed out once again. I went to the emergency room because I needed to have stitches in my chin. While there they did an EKG which was abnormal, which I knew it would be since I was told I had a murmur. I was very surprised that they admitted me they gave me a test I believe is called a tee where they discovered I have ebsteins anomaly and then from there they sent me to a bigger hospital. From there they did a ton more tests and tried to simulate my irregular rhythms in my heart in which they could not do. So they sent me home with an appointment in which I had the other day and they want to do surgery to repair my tricuspid valve. I guess what I’m getting at is if anyone has some more info? I want to understand what I am facing because I truly don’t know. What should I be looking for in my surgeon? I have absolutely no symptoms except for passing out, and they can’t contribute that to my heart (but they can’t rule it out either) so should I get a second opinion? I’m just very confused this was all thrown up at me all once any info would be greatly appreciated.
Comment by Will — October 1, 2010 @ 2:40 am
Karen, I just had surgery and oblations, and trimming of right side of my heart for the exact problems you mentioned. I am 62 years of age. The oblations for wpw were on Oct. 4 and the surgery for all the other was Oct. 7. I just got home Sat. from Mayos in Rochester, Mn. and am doing great. God used an outstanding medical team. Dr. Heidi Conoley was my cardiologist, Dr. Joseph Dearani my surgeon, Drs. Munger and McCleod for the oblation of extra electrical fibers. Mayo Clinic in Rochester, MN is the place to go and the Nazarene Well House, a guest house provided by the Church of the Nazarene on l3 l/2 Street, is the place for family to stay. $30 for first night and $25 for the other nights as long as needed.
Comment by john boevers — October 25, 2010 @ 4:34 am
Hi – really interested to find a SCUBA diver with Ebstein’s. My 14 year old is a navy cadet and managed to find himself turfed out of the school pool having suited up for a SCUBA course (literally this wasn’t raised until he was in the water, despite having filled out the health form 12 months earlier!). I need to have him assessed for fitness to SCUBA – he really wants to do this. What was your experience regarding the tests needed?
Thanks,
Comment by Jayne — December 18, 2010 @ 8:10 pm
Wow … this is amazing. After 52 years it is incredible to find so many others with same/similar experirences and combinations of conditions. I have never met another person with Ebsteins and also to find people with other combinations is extraordinary.
I have a mild Ebsteins Anomoly, and have had surgery to correct quite a nasty version of WPW and a severe ASD. I also underwent a non-surgical ablation which took out the AV Node. A pacemaker was put in but I have another abnormal pathway that I conduct down so the pacemaker is now obsolete (my choice).
And yes, explaining any of this to people has been a challenge. Mention “pathways” (us meaning electrical conduction pathways) and the response is always, oh yes my grand parent, uncle/aunt or someone had “pathway” surgery (meaning bypass). I have always just said I have a few heart related issues and like many of you have also indicated, I just leave it at that unless pushed for more information.
I have two children and five grandchildren and continue to get the most out of every day. The second had a more drammatic arrival being that an episode of rapid AF at 34 weeks required electrocardioversion to stabilise things. He was born a peaceful, beautiful specimen of humanity and is a strapping your 24-year old now.
Whilst looking “normal” was an advantage, it has also sometimes made it difficult to explain the severity of the situation when this was required.
I found people fussing to be the most difficult thing to deal with and so could relate to the young navy cadet and the SCUBA diving incident. When one tries to live life as normally as possible and makes efforts to overcome challenges of a cardiac condition, it is so frustrating when other people (unfortunately often out of ignorance) make decisions that prevent you from having a go.
My parents were told I wouldn’t get past 13 (max) and I’m here today with them all shaking their heads and waiting to see what I get up to next. I travel (driving) 70,000 km a year working as a professional musician / entertainer. Basically – living my dream!
Reading the posts has helped me to understand the constant fatigue, but I guess I’ve been pushing past it for so many years now, I’m just going to keep enjoying every day and making the most of all that comes my way.
Thanks for the fabulous web page and thank you to all of you who have shared your experience … it has been amazing to find others with so much of the same experiences. I live in Australia but my surgery was done in the USA when it was still classified as “experimental” by the American Government.
It certainly changed my life for the better.
Comment by Kathy — February 20, 2011 @ 11:34 pm
The only time I use the name of my condition is if people ask what it is, or for medical doctors. Other than that I say I have heart disease and explain about my surgeries. (if people ask about my scar) I have had it since birth and was never allowed to do many activities so I knew about it always. I would say I didn’t really understand it until I was going under the knife a second time at the age of eighteen.It doesn’t bother me if people ask or want to know. When they asked me for the option of plastic surgery on my scars, I refused. It is apart of who I am and I’m not ashamed.
I just want to be healthy and here for my daughters.
Comment by Miranda — March 14, 2011 @ 2:13 pm
When my mother was 84 she was diagnosed with Ebstein’s Anomaly. I know she was seeing her general practitioner for high blood pressure, diabetes and asthma. It wasn’t until they decided she needed to have a stress test that they referred her to a cardiologist. The cardiologist ran a gamut of tests on her heart that they diagnosed her with Ebstein’s Anomaly.
I was there when the tech was doing a doppler sonogram and she ran out to get the other techs to come look at Mom’s heart. She said it is so rare to see someone with a true Ebstein’s anomaly heart. She has only seen them in textbooks. She said she has seen Ebstein’s anomoly in other patients, but never like my mother’s.
As a child, my mother used to pick cotton in the fields and pass out. People would splash water on her face and tell her to get up and get back to work. They used to say she needed to build a tolerance to the heat. She was orphaned before she was ten years old and was passed around from family to family as the household child caretaker and maid. She was diagnosed as having asthma and they would give her a menthol cigarette for treatment. The menthol was supposed to open up her lungs. Medical care back then was not like it is today so it is not surprising she was never diagnosed with Ebstein’s as a child.
The cardiologist that diagnosed her with Ebstein’s said he normally recommends surgery as treatment. However, in her case, her heart found a way to work without surgery and he would be afraid that he would make things worse. So she has never had surgery for her heart.
She has however had her appendix removed, her gall bladder removed, cataract surgery and major dental work – all done before she was diagnosed with Ebstein’s. Now that they know she has Ebstein’s they tell us before any dental work is to be done she must take antibiotics. It’s hard to find a dentists to work on her.
Although, my mother lived a hard life, I think it helped her heart be stronger and that is why she is still with us today. I read that parents who have children with Ebstein’s should encourage physical activity because exercise will help strengthen their heart and improve blood circulation.
I also read the oldest recorded patient with Ebstein’s lived to age 85. Well, my mother is now 85 and will be 86 in July 2011. I don’t know how many others over the age of 85 have Ebstein’s but my mother is about to be one. So Jim you might want to set your goal at 87 or later instead.
Those of you that are mere babies to my mother have to know doctors are a great help in keeping you healthy, but God has the final say. This is very true in my mother’s case and she didn’t have the best care growing up.
We live in Texas.
Comment by Juanita — March 18, 2011 @ 7:27 pm
Hi im Tiffany and I’m 17 years old and I have ebsteins I can do pretty much anything anyone else can it just is a stinky feeling knowing that I have it.. I’m afraid I’m not going to be able to have kids.. Do you guys think I’m able to?
Thanks !
Comment by Tiffany — April 5, 2011 @ 2:25 am
Two weeks ago I gave birth to my daughter Alice, who was previously diagnosed (in uterine) with a severe case of Ebstein’s. Tragically, she passed away two days later; the regurgitation was so severe that her heart was not circulating enough blood to the rest of her body, causing an overpowering amount of issues.
I had a C-section and I have to say that it was a much more positive experience than “they” say. I had previously asked a lot of people including those who actually had a c-section, but no one could really satisfy my curiosity about it. All that to say, I really am doing fine and though I still feel some pain, I was off morphine and just taking two advil and two tylenol two days after. My point is that if you have Ebstein’s and are pregnant, my suggestion is to DEFINITELY have a C-section. It was stressful but mostly emotionally. I had a spinal and it did hurt but was only about a 4-5/10 on the pain scale.
My husband completely agrees. You’ll be under enough stress with the labour/delivery.
We wish you the best of luck and wish so much that our daughter would have been able to grow up and have the same opportunities as you.
Natalie and Peter
Comment by nathiedionne — April 5, 2011 @ 3:20 am
I alway wonder the same thing about my Florrie, but there are so many encouraging posts on this site that it makes me believe that many many women who have ebsteins also have healthy babies without it being too detrimental to their health (see section on mums). I guess it depends on the severity of your condition but you sound like you lead a full life. Obviously your cardiologist will be able to advise you better than I can.
Comment by caroline — April 6, 2011 @ 3:53 pm
Natalie and Peter
So sorry for your terrible loss. I thank you for your brave story, and I hope it helps others.
Caroline
Comment by caroline — April 6, 2011 @ 3:54 pm
hi 2 year ago i got with my fiecce we had a lovly little boy but we found out after 3 months carying my little boy that she had ebstines she is ok but on loads of table lots of trips to hopstial for check ups and when she gets ill she some times has to stay in hosptal i would like to do some charity work to help this problem get sorted not only for lis but for other as well thanks
Comment by dave — April 10, 2011 @ 9:44 pm
Hi there,im 29 and i just found out that i have epstein “issues”after a long term pain in my left hand,i did an echo and it was a bomb for me,the doctor said i should stay away from salt and not to gain weight,and ofcourse do all my check ups on time but the thing is that its hard to accept this truth,when i think about it i get short breath,but little by little im getting used to it.
I wonder if its normal to have pain sometimes in left sholders arm & under ear!
Comment by Rania — April 18, 2011 @ 12:28 pm
My husband was first diagnosed with EA when he was 13 yrs. but he did not recieve treatment until 21 yrs of age, that was his first vavle repair, the surgery lasted 3 yrs. then he began to get sick again.He started to get palputations and atrial fibrilation, severe enlargement of the right ventricle, shortness of breath and fatigue.We have recently seen a surgeon for vavle replacement surgery, but the cancelled surgery due to high pressures in the right and left heart.Now we must wait for the next step and we are not sure he will live that long, so i hope this information helps.If there is anymore information i can help you with or any questions i can answer for you please fill free to e-mail me.
Comment by lori devora garcia — October 21, 2011 @ 4:06 pm
I’m 24 and I was diagnosed with EA when I was 19. I used to have fainting spells as a child and I’m surprised that it was never discovered. I started having heart flutters when I was in college and my doctor stated that she heard a faint murmur and sent me for an echo. Once I was diagnosed, my cardiologist sent me to have cardiac catheterization to test for extra pathways. The docs say that I have moderate to severe regurgitation (I still don’t like that word!) in my tricuspid valve, and mild to moderate regurgitation in my mitral and aortic valves. I’ve led a pretty active lifestyle (I used to run 25 miles a week) and my doctor has never put any restrictions on me. I also drank and “partyed” (and by partyed I don’t mean drug use, just drinking/dancing/etc) in college and never had any issues (but looking back, it probably wasn’t a good idea). I do wear a medical bracelet so I get questions all the time asking what’s wrong with me. I just tell people I have a heart defect and leave it at that. The only thing I haven’t been able to do is donate blood. My doctor also doesn’t want me to do anything that could risk infection like tattoos or piercings, etc. He’s told me that I’ll need valve replacement or repair “within the decade”. I still get flutters and it seems like they get worse when I’m stressed. I’m a full-time law student and so I’m stressed/anxious a lot! It’s very frustrating to not get definitive answers from my doc on when I’ll need surgery, etc. Has anyone else had similar issues?
Comment by Mandy — October 24, 2011 @ 1:03 am
My name is Sarah, I was born with EA and diagnosed just hours of being born I had my first surgery when I was 18 months then another when I was 5 yeas old to replace the ring and fix a leaking valve. They say I have a sever case of EA and my future is uncertain. My parents were told I would not live past 12 and if I did then I would need another surgery well when 12 came and gone they were very surprised and then I was given the age 20 and no chance of being able to handle having kids. I am now 26 and have 2 beautiful boys and still haven’t had another surgery and my doctor said he will not put another age on me because I keep proving him wrong lol. I’m just now starting to realize how server my condition is and am so scared that I’m going to die and leave my boys without a mom. I hate not knowing how much longer I have. I just wish I could hear from someone who has been told what I have and find out they lived to be at least onto their 50′s.
Comment by Sarah — January 9, 2012 @ 8:26 am
Hi Sarah
You sound like you are doing really well! Take a look at our webpages and comments; there are plenty of people on there over 50 – in fact someone was just diagnosed at 82 who came onto the site!
Also have a look at our sister site on facebook http://www.facebook.com/#!/groups/67874430856/- there are plenty of people there you can talk to in real time.
Hope this helps,
Caroline
Comment by caroline — January 9, 2012 @ 8:53 am
Mermer was heard at 8 but did’nt get Epsteins diagnosis until age 29 after my second catheterisatio {thru groin] which was so painful I never went back for 25 years. It hasn’t affected me in everday life except that enrgetic sports are ruled out; however last year at age 54 started dull ache right side chest area and other sporadic chest pain. Echogram sowed severely enlarged right side heart,bad leaflets and bad blood regurgitation,but because symptoms are vague there is no plan of trestment yet and to be honest the British health service takes so long to lumber into action I’m not optimistic and feel uncertain about the future.
I am shocked to read above that only 5% live till age 50 is that right?? My grandmother probably had it and lived til 73.My advice would be to forget about the label of Epsteins; these things are for doctors to help them understand whats going on inside
Comment by Duncan L — January 29, 2012 @ 6:15 pm
Hi Duncan and thanks for your post. I’m not sure where you got the 5% figure from – I’ve never read such a thing. See Juanita’s post below.
Caroline
Comment by caroline — January 29, 2012 @ 9:16 pm
I agree Caroline. A “heart murmur” runs through my mother’s family – I am the first to be diagnosed with Ebstein’s, but here is a little of our history.
Great Grandmother Elizabeth
Had two children by age 19, lost husband to Spanish Flu
remarried
Had two more children
divorced sometime before age 30 (?)
Raised four children literally alone, plus divorced daughter and 2 grandaughters through the war years.
Died of congestive heart disease at 83-!/2
Her only daughter, my maternal grandmother ..
Had undiagnosed “valve disorder”
Bore and raised three children
Suffered a stroke circa 1948, (said to be caused by “blood clot” thrown from heart valve) lived as a semi invalid for about a year, died at age 36. Doctors have since told the family that early diagnosis and blood thinners would never end in this result today.
My Mom, “heart murmur”
Bore and raised four children
Will be 81 in April
I am 61+, have EA from birth (with obviously bulging right ventricle), and Atrial Septal Defect (the hole that never closes off from lungs at birth). I have never been able to shake my tobacco habit (less than a pack) since I began at age 15. My color is normal, and I only started to tire recently while walking uphill.
While recently following up on blood tests that showed I am hyperthyroid, it was pointed out that my heart was “tachy,” with a rate of 140. I have managed to control this arrythmia with magnesium tablets (400 mg, chewed a bit at a time throughout the day), and some dietary potassium (O.J., bananas, potatoes)- until I can get some anti-thyroid drugs to block the antagonist.
So I hope that folks won’t live in fear of an early demise from EA, just because some doctor who is worried about liability issues, might suggest you should. (One doc tried to put me on Beta Blockers – while I’ve had LOW BP all my life! These drugs are contraindicated for EA patients.) So be careful! Only you can gage how you feel, and what might seem a risk by comparison. And we should always learn all we can.
In that regard, I’d like to thank the creators of epsteins.org for a wonderful website!
Comment by Lynn — March 17, 2012 @ 3:52 pm
Oh yes, and my mother’s sister has a “murmur” too! She bore and raised SIX children (the 1st pregnancy being twins!), and is currently taking two meds for High BP and coumadin (blood thinner), after suffering a minor stroke 10+ years ago, from which she completely recovered. She will be 79 this month.
Comment by Lynn — March 17, 2012 @ 3:58 pm