SparkPeople Mended Hearts Team Messageboard This is a team for people who live with congenital heart defects, to find support, give advice and find encouragement in other's experiences. SparkPeople Mended Hearts Team Messageboard Pacemaker I got a pacemaker last October and am trying to figure out what exercises are safe to do. Sun, 6 Apr 2014 17:16:29 EST Motivational Challenge I saw how everyone in this forum wants to drink 8 glasses of water for their challenge. I can make that my challenge in other forums and I also looked at it as a great disappointment that everyone here seems to want to take the easiest path for them. (Though drinking that much water is not that easy for me.) With all of that said, I decided to be different and am hoping others will follow. To try to fulfill a challenge, I want to share this link with you: Sun, 12 Jan 2014 17:28:34 EST Hello When I first joined this site, the site decided that it would be enough for me to lose about 36 pounds. That's not so bad. Then I went to another site that would show me what I should look like at my target weight goal. I still looked fat. I think it might be because of all those scrawny models out there. Anyway, whatever the case, I decided that I want to lose even more. Now I have 60 pounds to lose. I hope I did not set an unrealistic goal. I used the BMI chart to help me. Plus I never had ... Sun, 12 Jan 2014 03:32:05 EST ASD SURVIVOR Hi, I just wanted to introduce myself to the group! I have been on SparkPeople for a couple of years but just found this group! Writing about my recent 5k made me realize that there was probably a relevant group on Spark People for survivors of Heart defects! <BR> <BR> Anyway glad to see I was right! <BR> <BR> <em>252</em> Tue, 20 Aug 2013 14:00:34 EST new to team - re: exercise, guilt Hi! <BR> <BR> I'm Annie and was born with 3 different heart defects. These problems have affected me all my life. I'm 59 and am alive because of God's grace and modern technology. <BR> <BR> I need to lose 45 lbs., which would really help my heart function better. I've just started the Chris Powell carb cycling "diet", and am feeling hopeful about this. <BR> <BR> But I have a problems with exercising. Either I do too much and I get out of breath or I just exercise a little and I get imp... Sat, 27 Jul 2013 17:49:20 EST Hi from another ToFer Hi everyone! <BR> <BR> I don't know if this is an active group or not, but thought I'd join. Spark recommended a heart disease group, but don't feel I necessarily fit in there. <BR> <BR> I am a 38 year old female born with Tetralogy of Fallot. I had a BT shunt at age 1/2, Tetralogy "repair" at age 3, pulmonary valve replaced at 19 and 2 ablations (2 days apart) when i was 35. I've been on a roller coaster ride with my weight since my pulmonary valve replacement. I did spend a good amount o... Thu, 4 Jul 2013 22:20:51 EST Surgery for Hypertrophic Cardimyopathy (HCM) Dear Wonderful, Supportive Team Members, <BR> Has anyone had surgery for HCM??? (It would be a Septal Myomectomy.) <BR> I'm looking for some support here! <BR> Thanks! Fri, 3 May 2013 09:21:54 EST Still trying to wrap my head around this. Hi everyone. My name is Kim and I'll be 50 in Feb. I've known I've had a bicuspid aortic valve since I was around 25 but I was given the impression at that time it was really nothing to worry about and that many people walk around with it and don't even know it. <BR> 2 years ago I started getting serious about losing weight and exercising. I joined a local fitness center and I lost 30 lbs and even ran in 4 different 5K's. I've felt better than I have in years. I especially enjoyed runnin... Sat, 19 Jan 2013 20:34:09 EST HEART DISEASE IS A SERIOUS MATTER hOW ARE YOU GOING TO HANDLE HEALTHY EATING through the Christmas Season? Are U going to eat what U want, and to heck with high blood pressure, trigly!s, the possible fluid build up from to much salt, or the high sugar intake of alcohol. Since this is a mended hearts team and not a whole lot going on with it, I thought I would try and revive the forum. I really hope that everyone has a truly good Christmas, and I hope everyone will remember that your heart is on the mend and needs looking afte... Sun, 23 Dec 2012 14:47:53 EST Daily Chat It's sure hard to not overdo things. Fri, 30 Nov 2012 09:40:40 EST motivation as a new member of thi team, and as a person living w/heart disease, I was wondering why this discussion forum is not active. I had CABG in 2003 and 2 stents since then in the veterans hospital. Being diagnosed w/heart failure(New York Stage) stage one I really have to stay motivated, educated, and dedicated to a healthly lifestyle. I have made a 20 year study of heart disease w/info from harvard, and Cleveland Clinic. If I can be of service to anyone on this team just let me know. I am a dis... Sun, 21 Oct 2012 12:23:04 EST Working on healthy lifestyle. Hi my name is Tom Wampfler. I recently had open heart surgery to replace my aortic valve with a mechanical valve. I am know working on living a healthy lifestyle through healthy eating, which includes eating a heart healthy diet, watching my cholesterol and sodium in my diet, and exercising for fitness. I have already lost over 45 lbs since June and plan to lose another 40 to get down to my target weight of 200. I am looking forward to enjoying my new lifestyle for many years to coe Sun, 9 Sep 2012 23:41:36 EST Hypertrophic Obstructive Cardiomyopathy Hi all! I just joined the team today. I was diagnosed with Hypertrophic Obstructive Cardiomyopathy about 7 years ago. It wasn't much of a problem for me thanks to meds. I was even allowed to get pregnant in 2010. However, I went into a-fib 7 months in and baby and I had to be shocked. We are both well now. Or, she's great and I am still medicated. I have occasional issues, though and the doc has mentioned myectomy. I hope that weight loss will help me out, and maybe put off surgery... Wed, 2 May 2012 21:23:32 EST ToF Repair 40+ years ago Hi group! <BR> <BR> I'm Maureen (or Mo), and had ToF "complete corrective" surgery in 1970 when I was 9 years old. Have had no problems or additional surgeries since then. Within the past 10 years I've been more conscientious in following up with cardiac specialists. With menopause changes, normal aging, stress of caretaking for others etc. affecting my heart health and weight, it seems more important now than ever before to get as fit as I can. I have some pulmonary regurg/insuf and my ... Tue, 1 May 2012 11:50:06 EST TEAM GOALS... Hello Everybody! I hope we are all having a great week and are looking forward to a great weekend. <BR> <BR> I have added a new team goal I think we can ALL achieve. check it out and feel free to share some ideas of team goals we could all have/share! I am open to some new ideas and we can start fresh!!! looking forward to it. <BR> <BR> I will start the motivation ... I hope to see what motivates you as well...we can encourage one another. <BR> <BR> "Don't stop until you're proud." <BR> <... Thu, 5 Apr 2012 19:40:04 EST How is everyone today??? how is everybody today? what is on the agenda for a heart healthy day? are we sticking to our goals? what are some of the goals we are setting? <BR> <BR> My goals for the day are... <BR> 1. mountain bike 5 miles...I have a Gary Fisher screaming my name in the back yard! <BR> 2. drink the recommended 8 glasses of water PLUS some. <BR> 3. cook an ever so healthy supper of Lemmon Pepper Talapia, Brussel Sprouts, and Quinoa. <BR> 4. survive the night shift at work tonight. <BR> <BR> <BR> S... Thu, 22 Mar 2012 10:53:19 EST Embrace? Do you hide your scars or wear them proudly? What type of clothes changes have you had to make? What are your biggest fears before/after your suregery/treatment? <BR> <BR> Lets try to start some topics about things we can discuss in groups or one-one! I tried to get some topics started for us. Any other questions are open and welcome!!! Wed, 21 Mar 2012 16:26:41 EST ?Hopeful Captain? Looks like this team has had no luck in the captain department. I am very familiar with Mended Little Hearts of Winchester VA. My daughter's BFF had a transplant August 2009 after a battle with CHD since birth. She is now a happy, healthy, smart, fully functioning 13 year old. She got her 2nd chance at life...THANKFULLY! <BR> Sadly in November 2009 another friend of ours lost their 2 year old little boy to CHD. He made it to the transplant list, but never got his 2nd chance with a new heart. ... Sat, 11 Feb 2012 01:56:22 EST Feb 7 - Feb 14 - Congenital Hear Awareness Week Are you doing something to get the word out? Have you joined a Congenital Heart Walk in your area? Wed, 8 Feb 2012 13:05:09 EST TOF pt/ SP newbie! Just started SP... so far, I have good feelings about it. I'm a 25 year old gal from NJ. I have TOF, and I'm ready to lose weight-- 52 lbs to go! I hope that people in here feel free to friend me, spark mail, or whatever! I have already been happy to find how welcoming members are :) <BR> <BR> Fri, 27 Jan 2012 16:40:43 EST So happy to see this forum Hello everyone! I am new to the forum. I was so happy to see a forum for those of us with Congenital Heart Defects. I was born with Transposition of the Great Arteries and had the Mustard Procedure when I was 2. I am almost 40 and have done well. I've had issues along the way, and had to make decisions I would have rather not made, but God has truly blessed me. I think my last annual appointment with my Cardiologist put a lot of things into perspective, and made me realize just how blessed I'... Wed, 14 Sep 2011 13:42:11 EST Ebstein's Anomaly patient and new to Spark People I was pleasantly surprised to find this group as I've not met many people with congenital heart disease. I was born with Ebstein's Anomaly with Wolffe-Parkinson-White syndrome. This was discovered when I was 7 when I had my first attack of super-ventricular tachycardia. Ebstein's anomaly is a rare heart defect in which parts of the tricuspid valve are abnormal. The WPW part made my heart race at an excessively high rate. I had a RF ablation surgery to correct the WPW 30 years ago and hav... Fri, 19 Aug 2011 08:38:10 EST Introduction Hello, I am Georgia a congentital defect survivor. I was diagnosed at age 2 with heart disease. but in the 50's they didn't know a lot about what I had. I had mirto valve prolapse, and a hole in the lower wall of the heart, which allowed the blood to flow between chambers. In 1978 I had heart surgery, they closed the hole in the heart. Again in July of 2008 I had to have another surgery. They replaced the pulmonary valve and releifed cut the other valve to help them work better. In August of... Tue, 21 Jun 2011 13:26:37 EST American Heart Association Heart Walk 2011 I am participating in the Heart Walk at Heinz Field in Pittsburgh on October 22, 2011. <BR> <BR> Are any of you participating in Pittsburgh or at an event near you this year? <BR> <BR> I have more details on my blog today if you are interested please take a look and join us! It is a great cause as we all know!!! <BR> <BR> <em>311</em> Mon, 20 Jun 2011 13:17:07 EST Log In Points Today 7 Sun, 22 May 2011 11:24:15 EST Hello From Chicago Happy Easter, <BR> <BR> My name is Greg and I live outside of Chicago. I've had a number of heart issues for the past 7 years. It's tough to get bad news from your doctor of medical issues that will shorten your life. My most recent episodes is my Bradycardia which at certain times I just pass out without any reason. Finally after 4 years in battling this condition a pacemaker was implanted in December. Things are going well and I'm sticking to my pan of losing 90-100lbs. I've lost 50+ lbs s... Sun, 24 Apr 2011 11:28:03 EST Just joining! My name is Sandi and i am a 41 year old wife and mother. I had an Atrial septal defect repair. The hole was to big for it to be repaired by going through the groin. I had my surgery on March 3rd. Now i am at the point where i feel much better and can do things again, It is time for me to get my butt in gear and perform a lifestyle change. I have been a member of sparkpeople for a few years now and for one reason or another i haven't been able to stay commuted to getting my self healthier. Aft... Tue, 19 Apr 2011 09:02:01 EST I WANT TO BE YOUR INSPIRATION!!! I'm just going to keep this short, sweet, and to the point! <BR> <BR> I'm getting a S-ICD (subcutaneous-implantable cardioverter defibrillator) implanted on Thursday, April 14th. I'm so excited! What they originally thought was A-fib is actually Ventricular Tachycardia. That means I'm at a very high risk for sudden cardiac arrest (heart attack). <BR> <BR> I am a 27 year old woman. <BR> <BR> I have an enlarged heart (a little more than twice the normal heart size), CHD, and have had so far:... Sat, 9 Apr 2011 04:23:30 EST I am so excited to have found this team! I am pumped to find a congenital heart defect group on Spark People! I am 29 years old. I was born with Tetrollogy of Fallot and VSD. When I was 18 months old I had my first open heart surgery. Five years ago in March I had my second surgery, Pulmonic Valve Replacement. I was told my entire childhood what I couldn't do and I hated it. Once I had my valve replaced I was told to get out there and move. Instead of getting fit and healthy and moved less and ate worse. I now feel like I ha... Mon, 4 Apr 2011 19:06:08 EST What type of heart problems do you have? I've briefly glanced at several members spark pages and have noticed there are a wide range of heart issues that members have. I would love to learn more about the different ones. Is your issue genetic? Age related? Weight related? Etc. Share whatever you are comfortable sharing. <BR> <BR> I have a genetic condition called Marfan's Syndrome. I inherited from my mom who died of an aneurysm when she was 35 and pregnant with me and my twin. At the time she was diagnosed with the disease and it ... Mon, 21 Mar 2011 01:58:57 EST introducing me Hi, <BR> <BR> My name is Leanne. I had open heart surgery when I was 5 for TOF. (Tetrology of Fallot) I am working to keep my heart healthy and live with other health issues including Hashimotos thyroid and metabolic syndrome. I am concerned about my weight and working hard to release it. <BR> <BR> I'm very glad that there is a board here for heart conditions. I'm looking forward to meeting others. Mon, 14 Mar 2011 14:15:56 EST Exercising with heart issues? What physical limitations are you dealing with since your heart issues developed? What changes have you made to overcome those limitations? <BR> <BR> <em>299</em> <em>319</em> <em>237</em> <em>231</em> <em>23</em> Fri, 11 Mar 2011 00:01:38 EST New to the team! Hey everyone!! I was born w/ a congenital heart deffect and have overcame it all my life! Just wanted to intoduce myself to everyone! <BR> <BR> My name is Mary Sly I Live in the UK w/ my husband who is in the US Airforce this is our 2nd duty station. Im 22 and have overcame alot in my life as you all have probably done as well. I Love sports and hated that I was not able to play them all in Highschool. I currently working out w/ P90X and it is kicking my butt!! Hope everyone has had a wonde... Fri, 28 Jan 2011 15:54:17 EST Hello I'm New To The Team Hi my name is Greg and I'm new to this team. I have bradycardia and recently had a pacemaker put in place to address this condition. I'm looking for Spark friends to share their similar conditions. <BR> <BR> Thanks, <BR> Greg Thu, 2 Dec 2010 19:45:10 EST Anyone ever heard of CA to PA Fistula? Hi! I am new to this team and to heart matters for myself. Have strong family history of heart disease. <BR> <BR> I had a heart cath yesterday and I thank God there were no blockages; however the doc said that I have a Coronary Artery to Pulmonary Artery Fistula. He said I was born with it and it should have shown up before now. He does not know much about it so is sending the pictures and report to another specialist at a University Hospital. He said he doesn't think it can be fixed. <BR> ... Tue, 26 Oct 2010 12:16:53 EST New to Mended Hearts -- Hello! Hello All, <BR> I am new to Spark People and to this team. I have Hypertrophic Cardiomyopathy and had open heart surgery 3 months ago to do some repairs. I was unable to work out for a long while prior to my surgery and now am in Cardiac rehab and working on my fitness and weight issues. Happy to see a team that understands my issues!! Sat, 14 Aug 2010 19:22:03 EST Adult with Congenital Heart Defect here. Hi everyone! I'm new to this board and to SP. I'm an adult that had a congenital heart defect repaired as a child. It was Transposition of the Great Vessels. While my childhood was ok, as an adult I deal with atrial flutter and fibrillation. I'm trying to lose about 40lbs but mostly I want to get into better shape as I think it can't do anything but help my situation. <BR> <BR> Cheers <BR> Wes Sat, 3 Jul 2010 11:39:24 EST New to heart issues and to this team Hi, I'm Simone and I'm new to this team. <BR> <BR> I found out about a month ago (give or take) that I have a hole between the chambers of my heart (atrial septal defect), which apparently I've had since birth. I'm supposed to have a non-surgical procedure in a few weeks to get it patched up. They call it non-surgical because they don't have to open my chest (they go in through a vein in my leg and use a catheter to feed the device up into my heart), but it still scares the livin' daylight... Tue, 27 Apr 2010 19:02:49 EST Hi - I'm new! Hello! <BR> <BR> My name is Nellah and I just joined the team. I have Hypertrophic Cardiomyopathy (HCM) and I had heart surgery in July of last year. I just recently started cardiac rehab and I am now seriously working on my weight. I would appreciate buddies or advice. After countless failed attempts, I realize that community support might be very helpful. Looking forward to a new start! <BR> <BR> <em>213</em> Sun, 28 Mar 2010 20:55:24 EST Just wanted to introduce my self Hi My name is Ronnie and I have had heart disease my whole life. I have had valve surgery 3 times. I have been on a low sodium for about 10 years. But as you all know, cravings is hard at times. I really like Spark People because I can really see what I am eating. My hubby and I really do not go out to eat very often. Since I really can't eat anything out except "Lettuce", so to find ways around different food I want to try, I cook. I am a Professional Personal <BR> Chef. Self tau... Fri, 12 Mar 2010 17:27:01 EST Hi guys! Hey! I'm so glad I found this team! It's really neat to see that other people have some of the same conditions as I do! Well, I look forward to getting to know you guys and making this journy with you! <BR> Amadna Mon, 15 Feb 2010 23:50:02 EST how would you handle my situation? So, I have Transposition of the Great Vessels and a pacemaker. I am 28 years old, married, with 2 beautiful children. My husband's family lives 3 hours from us. I love his family, but visiting them for the weekend is tough. They have 3 dogs, 2 cats, and they smoke in the house. They do smoke outside when we come up though... <em>28</em> I have allergies, I think to everything that I mentioned. By the end of the first day there, I am wheezing and can't sleep comfortably because I am co... Wed, 20 Jan 2010 10:57:42 EST Glad to find this board Hi everyone. I was born with HRHS and PA with IVS and ust had my third surgery at the end of August. I am finally back in the gym and feeling good. I'm glad I found a heart board that has others who are able to exercise and I can hopefully learn things from. Wed, 30 Dec 2009 17:50:14 EST Want to say hello Hi, my name is Lisa and I live around Dallas, Texas. I had open heart surgery when I was 8 years old for Aterial Septal Defect, which one of my sons also had repaired when he was 2 years old. My weight had never been an issue until I had children. I have 5 kids, four boys and one girl. I hope to meet all of you soon. <BR> Lisa Mon, 9 Nov 2009 00:31:38 EST valve replacement Hello my name is Gail and I had open heart surgery in August of this year. I bounced back wonderfully but having trouble letting go of old habits in eating and exercising. Will be on coumadin for the rest of my life. This vitamin K thing and not eating cranberries drives me nuts. Any of you going through the same thing would love to hear from you Thu, 29 Oct 2009 13:03:34 EST Challenges! I am so happy that everyone is up for some challenges! I'll be MIA after today because I'm doing the Breast Cancer 3Day! Lots of walking for me this weekened. After that I'll post weekly challenges. Does Monday to Sunday work for everyone? If you have any suggestions; let me know! We have to keep our "Mended Hearts" healthy!! Thu, 15 Oct 2009 15:26:36 EST getting things going again I would love to see this become an active group. I am 41 years old. I had transposition of the great vessels at 2 years old. I was so happy to find this group because it's so hard to find a group with congenital heart issues. Tue, 6 Oct 2009 15:24:00 EST Newbie with Long QT Syndrome Hi everyone! <BR> I was diagnosed with Long QT Syndrome about 13 years ago (I'm 23 now), and have been fortunate to only need beta blockers and an external defibrillator around (you know, just in case). The beta blockers have really slowed me down, though, and make it REALLY difficult to lose weight. Having LQTS also makes it hard to be active and be good to my heart at the same time. Hopefully SparkPeople will help me out! Tue, 22 Sep 2009 00:00:25 EST Cardiac Cyborg Hello, everyone. I just wanted to introduce myself. I had open heart surgery when I was 4 years old for an atrial-septal defect (2 holes sewn up & 1 patched). Then I received my pacemaker (hence Cardiac Cyborg!!) when I was 27. I'm 34 now. Had my first child a year ago. I was always pretty healthy as a kid but a sedentary job then studying for my degree just didn't keep the balance. <BR> I'm getting back in shape now. Only about 13-18 pounds to go. <BR> <BR> So that's me! Looking fo... Mon, 24 Aug 2009 02:41:25 EST National Conference Hi All or Anyone~! <BR> <BR> I hope that I get some responses this time - seems like no Mended Hearts are looking at the Board - maybe that's because you all attended the conference and I don't know it! <BR> <BR> The national conference was wanderful. DH and I attended for the first time and came home "gung-ho" for MH! We are visiting today after DH comes back from bloodwork - hopefully we'll go in to see our patients and their families with more information and enthusiasm about heart hea... Thu, 11 Jun 2009 09:07:41 EST New Member Hi, <BR> <BR> I'm Michele and I'm attending the National Mended Hearts Convention in Orlando Fla. as I write. Luckily I live about 45 minutes north so DH and I have been commuting. We are loving the convention and are getting a real high for our Chapter and learning more especially about women's heart health. Hope to hear from all of you and share ideas for your chapters. Mon, 8 Jun 2009 22:18:43 EST I hate water! So now that I'm exercising and eating well - I'm drinking more water - which just sits right in my ankles! I know its water weight because my weight can fluctuate 10lbs in a night - but when I'm exercising I'm soo thirsty - aahh - does anyone else have this issue?? Any helpful tips?? Wed, 22 Apr 2009 09:47:30 EST SOUTH EAST GEORGIA IS HAVING A SPARKS RALLY.. HELLO <BR> <BR> IF YOU LIVE IN SOUTH EAST GEORGIA WE ARE HAVING A SPARKPEOPLE GET TOGETHER ON APRIL 25TH.. IF YOU LIVE CLOSE TO SE GEORGIA YOU ARE ALSO WELCOME. <BR> <BR> IT WILL BE HELD ON ST. SIMONS ISLAND, GEORGIA. FRIENDS AND FAMILIES ARE WELCOME. LETS MEET AT 10:30AM AT THE CASINO. THERE ARE PICNIC TABLES SO PLEASE BRING YOUR PICNIC LUNCH AND DRINKS. REST ROOMS ARE AVAILABLE. I AM HOPING THAT WE CAN HAVE A WALK FOR ABOUT 1/2 HOUR OR SO.. FOR THOSE THAT DO NOT WANT TO WALK THERE IS SO M... Sun, 1 Mar 2009 16:12:28 EST An opinion poll of sorts I'm just wondering how people feel about the scar/s they got thanks to heart surgery. <BR> <BR> I am quite fond of my scars personally. I especially like the one that I have that is indented, my "second belly button" my family and I call it. HA! <BR> <BR> I used to think that they were disgusting, but that was probably because people were telling me that they were, and the birthmark on my arm also. But people are silly. <BR> <BR> I think that I'm am quite lucky, in that my main, long scar... Wed, 25 Feb 2009 18:15:44 EST New - Repaired ToF Wow! I never thought a group like this would exist. I'm happy that it does though. <BR> <BR> I'm Ashley from New Zealand. I'm 20 at the moment, 21 this year. I'm married. I'm in my final year of university - working towards a BA in Classics and History. <BR> <BR> I had ToF which was repaired... almost 19 years ago, it will be 19 years on March the 25th - my birthday. The surgeons didn't know that I had ToF until they opened me up, they just thought it was a hole-in-the-heart - which might b... Wed, 25 Feb 2009 18:01:06 EST New member with Ebstein's Anomaly Hi, I'm 39 years old and was born with a VSD (which finally closed around age 30) and Ebstein's Anomaly (which is a deformed and displaced tricuspid valve). I've not had surgery ... yet. Doctors keep telling me I will probably need surgery sometime down the road, but I try to stay healthy so hopefully I can avoid it. The hardest thing for me is go up an incline, ie: stairs, a hill, etc. I get very winded and sometimes feel dizzy. I've been a SP member for over 2 years now, but I was away for ... Tue, 10 Feb 2009 10:34:00 EST IF YOU LIVE IN SE GEORGIA - SAVE APRIL 25TH.. HELLO <BR> <BR> IF YOU LIVE IN SOUTH EAST GEORGIA WE ARE HAVING A SPARKPEOPLE GET TOGETHER ON APRIL 25TH.. <BR> <BR> IT WILL BE HELD ON ST. SIMONS ISLAND, GEORGIA. FAMILIES ARE WELCOME. LETS MEET AT 10:30AM AT THE CASINO. THERE ARE PICNIC TABLES SO PLEASE BRING YOUR PICNIC LUNCH AND DRINKS. REST ROOMS ARE AVAILABLE. I AM HOPING THAT WE CAN HAVE A WALK FOR ABOUT 1/2 HOUR OR SO.. FOR THOSE THAT DO NOT WANT TO WALK THERE IS SO MUCH TO DO. THERE ARE LOTS OF LITTLE SHOPS, A PIER, AND OF... Tue, 3 Feb 2009 22:45:32 EST APRIL 25TH IS OUR GET TOGETHER If you live in South Georgia we are having a get together. It will be held on St. Simons Island. Families are welcome. You will bring your own picnic lunch and drinks. We will have prizes, etc. I will keep you posted as we get closer. Please let me know if you are interested in attending.. Hope to see you there. Hugs, Carol Sun, 1 Feb 2009 14:49:07 EST Anyone here? I have been away from SP for a while, but decided with the new year coming, I need to get back to getting healthy. <BR> <BR> I was born with ToF, and had surgery in 1985. As far as my last appointment with my cardiologist a little over a year ago was, I am doing well. I truly feel blessed and am very thankful that I am not on any medication, and have only had the one surgery. *knock on wood* <BR> <BR> I am, however, very concerned about my weight. I am currently at 225lbs, and should lose ... Sat, 27 Dec 2008 20:26:31 EST Here I am... Hi, <BR> <BR> I'm Kat. I'm 38 years old, married but no kids (artificial aortic valve 21 years ago - still got the same's perfect) <BR> <BR> I'll give the short version... I had a congenital defect that began bothering me at age 10. At 17 I had my aortic valve replaced with a mechanical valve...on warfarin for life (I'm the admin. of the bloodthinners team...) <BR> <BR> I had hemolytic anemia the next couple of years and nearly died...had blood transfusions and iron shots (in the ... Sun, 19 Oct 2008 17:48:30 EST Exercise Question Since being in the hopital for cellulitis and being diagnosed with a coarctation of aorta I have been off going to the gym. I am waiting to go back but have to see the cardiologist first. My question is after you have a stent put in are they any limitations to kind of exercises you are allowed to do? I read that you should lift weights and just keep it to cardio. Thoughts? Wed, 27 Aug 2008 07:18:11 EST New Member lifelong problem Hi my name is Kathy, 43, married with grown kids. <BR> I was born with a congentital heart defect and had a mitral valve surgery at 6months old. Then at 11 I experienced a heart attack and they found my aorta was narrowing (known as a coarctation). They fixed it and I was good as new. Went years eating my way through life issues been clean 10yrs from a meth habit OD twice. Now I am extremely morbidly obese. <BR> Was recently hospitalized with cellulitis. They checked my heart and found the c... Mon, 18 Aug 2008 12:49:10 EST Back again! I've been away from Spark People for a while, but I'm back for some inspiration! <BR> <BR> My name is Laura. I'm a 22 year old ToF patient, and this past week I was informed that within the next 2-3 years I'll need another heart surgery to replace my tricuspid valve. I have to admit that for all the bravery I thought I'd aquired from my annual myriad of tests, I am a bit nervous. <BR> <BR> I really believe it is important for me to have a healthy diet and fitness level going into this, so I... Sat, 16 Aug 2008 16:45:58 EST Heart Surgery Hello mended hearts. I am three weeks out of open heart surgery after receiving a new tricuspid valve. I am hoping to get back into the "spark people" habit again, not only to lose the 10 or so pounds I have gained from convalescing, but also to get my heart back to strong. Since I started this group I have lost momentum due to the stress of my health situation. I was very disciplined for a year after I joined SP and hope to get to that point again. Just looking for support or advice to he... Wed, 13 Aug 2008 16:31:23 EST WHERE IS EVERYONE? We haven't heard from anyone lately. How are you all doing? How did you spend your weekend. What were your plans? We went to the pier in Brunswick and watched the fireworks... There were about 1000 people there.. but they were all calm and really enjoy the show. Nothing else in my plans for the weekend.. How about you. We are having company on Monday for two weeks.. My brother-in-law and sister-in-law and of course Daisy the pup.. We are looking forward to them arriving.. Hugs, Carol Sat, 5 Jul 2008 12:15:47 EST It's Quiet Here.. How is everyone ? Haven't heard a peep from anyone here.. just want to make sure all ya'll are still ticking away and doing good. Drop a line here, let us know how you are doing so we know how to help.. Don't want this SparkTeam to dissappear. Mon, 16 Jun 2008 10:50:15 EST new to team I'm a 48 year old, soon to be grandmother, who was diagnosed with cardiomyopathy 7 years ago. I had a pacemaker-defibrillator implanted in 2004 which has greatly increased my cardio output. I have always had weight problems and have tried many diets without success. I want to lose weight so that I can increase my energy and lower the stress on my heart so that I can spend many years with my new granddaughter. Thu, 12 Jun 2008 18:30:56 EST Hey Just want to say hello. I am a valve recipient, 44yrs old. Looking forward to chatting with you! Sat, 7 Jun 2008 00:13:18 EST New Here Hello, My name is Rachel and I am a 36 yr old wife and mother. On Sept 8, 2004 I had OHS to replace my Mitral Valve with a mechanical valve due to having had Rhumatic Fever as a child. I am doing great health wise however my weight is slowly gaining, and I'd like to remedy that. I look forward to learning with, about, and from you all. <BR> <BR> Bear with me as I am new to SparkPeople altogether and still learning how to use the message boards lol. Wed, 4 Jun 2008 13:34:25 EST New to team-need heart valve replacement Hello Everyone, <BR> <BR> I just joined this team today. I'm 42 and up till last August thought I was healthy. I started working out to get ready for a trip to Disney World but no matter how much I tried I was still winded going up a flight of stairs. Turns out I was born with a bicuspid aortic valve and I now have moderate regurgitation. Boy what a shock that was! No one ever picked it up before. Looks like I'm going to get the valve replaced within the next year. This is all still ne... Fri, 30 May 2008 12:52:33 EST Working it out with a heart valve Hello, I am a 44 year old valve transplant patient. I would like to use this site for encouragement. I need a lot of motivation. Kind of depressed. But not that depressed (: I look forward to sharing with each and everyone of you! <BR> Good luck! <BR> Mon, 12 May 2008 13:08:20 EST How to get medical care without health insurance Hello everyone! <BR> <BR> It looks like everyone knows exactly what their conditions were on here. Sadly I can't remember exactly what mine was called. All I know is I had a heart attack at the age of 36. The funny thing was that this happened after losing 50 lbs six years prior to the heart attack and I've been taking good care of myself. Two stents were implanted in my heart. Now it's been two years and I was doing well until I was laid off last year and although Cobra was offered, I ... Sun, 11 May 2008 11:45:28 EST A serious question, PLEASE HELP Hey everyone, I need some help!!! I'm very overweight and I strongly believe that I may have suffered some sort of heart attack in the last year. I do not have any way to see a doctor right now so I'm wondering if I can get some advice on here. I'm finally losing weight and getting healthy now but my question is if I have had some sort of trauma to my heart, can it be fixed or reversed as I lose the weight and get healthier. I guess my main concern is will I need some sort of surgery or medic... Sun, 4 May 2008 12:19:36 EST Just joined -- 30yo repaired ToF Hi! I'm not new to SP but I'm new to this team. I have no idea why I haven't joined sooner! <BR> <BR> My name is Kelly and I'm 30 years old. I was born with Tetralogy of Fallot and scoliosis. I had a shunt put in at six weeks of age (Jan. '78) and a repair performed at six months (Jun. '78). Since then I've been doing pretty good -- nothing major to complain about. I also had my spine fused when I was 13, but that's a story for another team. <BR> <BR> <em>26</em> Thu, 1 May 2008 10:53:26 EST Hello I think this is where I belong... Hello...I am 33 and I have Hypertrophic Cardiomyopathy. I was diagnosis at age 30 even though I was born with this. I have an ICD (implantable cardioverter defibrillator), I had an extended septal myectomy (open heart surgery) in 2005. I was doing okay the first year. The day of surgery I weighed June of 2007 I weighed 293.5 and since then I have been working hard to lose weight, as of this morning I weigh 237.4. This has meant some serious changes in my life...but the thing tha... Wed, 16 Apr 2008 15:32:27 EST 27 yr old TET adult: NEW MEMBER!! Hey! I am an old spark person but new to the community! I need help being motivated to workout and keep my mended heart healthy! Anyone have any suggestions? Sun, 13 Apr 2008 22:00:36 EST Another new member with Heart Issues Hi I'm Tedsky and I've had heart problems since 1996 when I had my quadruple coronary bypass with graft. I did well until last year when I started to experience chest pains or angina. I had an angioplasty and two medicated stents were inserted. The pain went away for about 5 months but it returned. This past February I had a MI heart attack and was given TPA medication. I then had another angioplasty with 3 medicated stents inserted this time. <BR> <BR> Unfortunately I am already experienci... Sat, 5 Apr 2008 14:01:06 EST Howdy All! I'm new :o) Just wanted to say hi and introduce myself. I have congenital mitral stenosis and regurg. I've had 2 open heart surgeries but still have MAT and cardiomegally. I am a bit over-weight as well as my wife, and we found this awesome site. We've started our diets (oops lifestyle) and are working with a personal trainer at our YMCA. We both want to lose 50 lbs by our WDW trip in June. I also need to be healthier for my heart. <em>26</em> <BR> God bless everyone. Sun, 30 Mar 2008 11:49:27 EST Congenital Pro Long QT,,, LQTS and weight problems Hi Ya'll I am new to this team and have Long QT with a pacemaker and ICD now to help control it. Have had it all my life but was finally diagnosed correctly in 1995,I am 50 going on 51 this year and at a whopping 260 lbs as of my last Drs appt. I feel the weight and it gets me down so bad some times not only physically but mentally as well,I feel people starring at me laughing at me and the like, plus I have gotten to where I find it hard to go shopping and such without being pushed in a whee... Fri, 28 Mar 2008 22:11:57 EST New, parent of a child with a CHD Hi, I hope it's okay for me to hang out with you guys. I don't have a CHD, but my 11 year old son does so it's a huge part of my life. He has subaortic stenosis and aortic insufficiency. He's had open heart surgeries (subaortic resections) in 2001 and 2006 and has been doing great ever since. I'm interested in how adults with CHD manage their illness, as my little guy will be a grown up before I know it! Sat, 8 Mar 2008 21:39:33 EST New member with heart "issues" Hi everyone! <BR> <BR> My name is Sue. I am 29 years old and happily married, going on 2 years this Fall. I was born with a Congenital Heart Condition known as Transposition of the great vessels/arteries. I had open heart surgery in 1979 to correct that by way of the "Mustard procedure". I have always struggled with my weight since childhood and the fact that my mother kept me in a "bubble" didn't help. I was rarely allowed to participate in physical activity as my parents feared it would... Sun, 2 Mar 2008 22:17:04 EST Hello, New Team! My name is Laura. I'm 22 years old. When I was born I had Tetralogy of Fallot, surgery, lots of doctors visits, another surgery when I was seven, lots more doctors visits, and now I'm all grown up. I just left my pediatric cardiologist and shifted to a Big Girl Doctor. I've always had weight issues, and feel that now it is more important than ever to get them in check. I want to have kids one day, and I want to be more active. I'm a part time student and manager of a young women's clothing st... Fri, 29 Feb 2008 11:34:06 EST hello Howdy I am a mother of 2 and a wife of 9 yrs. I have had heart probs since I was 14 and thus my 2 pregnancies ended me on bed rest for 7 months and a hug weight gain. My youngest is 6 and I still carry the weight. Ugh! Heart surgery in 2005 and the many complictions that came with it left me even more oveweight. I have lost some weight several times each to have a doc change my medications and the new side affect of weight gain take over. I am now refusing medications (doc said it is ok) and ... Fri, 22 Feb 2008 07:48:33 EST Hey ya'll! Well I have a fast irregular heart beat and a small heart murmer and it caused me to pass out on occasion. I found out seven months ago and am now having to take medication. The doctor thought that it was due to caffine but I really dont drink alot of caffine now and it still acts up so exercise is a little difficult for me since whenever I try to do anything too physical it starts feeling like I am going to pass out again. <BR> Luckily I haven't gained too much weight since I found out, but ... Tue, 12 Feb 2008 01:47:34 EST Transposition of the Great Vessels Hi everyone! My name is Katie & I live in Maryland. I was born in 1987 with Transposition of the Great Vessels. When I was a few hours old I had a balloon septostomy & then when I was a week old I had the arterial switch operation. Somehow that surgery made my sternum collapse, so the summer before I turned 7 I had surgery to correct that. <BR> <BR> I know my weight is a factor on my heart & that my heart would be much happier if I finally got down to a healthy weight. <BR> <BR> Like other ... Sun, 20 Jan 2008 09:43:59 EST Hello Hi, I was born with a Congenital Ventral Septal Defect, at six months old the Dr's proformed a Pulmonary Banding, I had a 15% chance of making it through. Then when I was 3 the Ventral Defect was repaired. I didn't have any problems, until last year, when I started working out at the gym regularly. Now they can't figure out what is wrong. All my symptoms show that I have a serious problem, but none of the tests have shown what exactly the problem is. Sat, 19 Jan 2008 03:11:35 EST New as well I had surgery in September to replace the bicuspid aorta that I was born with - or as I call it - the screwy heart valve. I've lost 45 pounds since surgery and need to lose probably another 45. My only exercise is walking at the moment - that is all the cardiologist will allow till I go back in May. Fri, 11 Jan 2008 16:48:27 EST New Here! I am a 26 year old female, living in Canada, and I was born with a heart defect, Tetralogy of Fallot, that I had 'repaired' in 1985. I am blessed with the fact that I have had no problems since that surgery, but my weight is a huge concern for me, as I know it is hard on my heart. <BR> <BR> My biggest hurdle right now, other than the weight loss itself (need to lose about 50lbs) is the fact that I am so limited when it comes to exercise. Basically, my dr's tell me I should lose the weight, ... Mon, 31 Dec 2007 21:51:56 EST LQTS PATIENT WITH PACEMAKER AND DEFIBRILLATOR Just want to introduce myself and say Hi. I am a Heart patient with a congenital heart defect known as pro long QT in which I have been fitted with a pacemaker and defibrillator since 1995. Actually I am on my second set now and going strong I just need some help with my weight problems,if anyone else has rythym problems with their hearts drop a line and let me know ok <em>303</em> Tue, 4 Dec 2007 14:09:02 EST Just introducing and saying hello I am a 29 year old who was born with Pulmonary Atresia or "Blue Baby" I have had at least 5 heart surgeries in my life...the lateset being in 02 and after that surgery 2 years later I gave birth to my daughter in 04 and thankfully she is very healthy. If anyone from the group has questions let me know. I have been through a lot..I was happy to see this team page :) Mon, 5 Nov 2007 09:00:21 EST New member I am Bea from Kildare in Ireland and would like to join your team. I had a heart valve replacement three years ago and am really feeling great now. I also had an ASD closure. I have lost 42 lbs over the past year but am at a standstill at the moment and am definitely going to try harder. I know I will with all your help.Looking forward to meeting you all!! Sun, 2 Sep 2007 20:37:44 EST Going out on a limb here.... I thought I'd post something in the General forum, even though nobody's posted here yet! I just wanted to put in a plug for a web-board I'm involved in called Adults with Congenital Heart Association (ACHA). It's a group designed to further research and offer support to adults who have Congenital Heart Defects. I've been involved in my local chapter in Washington, DC. I ran my local chapter, but then membership declined so I had to discontinue that. I still continue to post on their web b... Mon, 27 Aug 2007 09:51:33 EST Hello Hi there, <BR> <BR> I'm a 52-year old researcher who works out of home, an old farmhouse on Prince Edward Island in the Maritime provinces of Canada. My partner and I have two daughters one at home, one in university. <BR> <BR> I have a variant of cardiomyopathy, as do the rest of my siblings. I've been using sparkpeople for the last few months and have found it very helpful in getting more fit and shedding some weight. <BR> <BR> This is the first SP group I've joined, I look forward to m... Mon, 27 Aug 2007 08:19:21 EST Hello My name is Brandon and I was born with a heart defect. I was born with what is called Epstein's Abnormality of the Tricuspid Valve (I like pulling out the whole name). Normally one or more leaflets of the valve develop in an inferior position. In my case the valve was practically non-existent. I was diagnosed when I was 12 and didn't have valve surgery until I was 22. I also had an ASD. <BR> <BR> Looking back on my life I imagine that I was a more sedentary child than most. I didn't play spo... Wed, 22 Aug 2007 20:34:07 EST Hi there! I'm excited to see there is a team for CHD folks. I was born with d-TGA, VSD and pulmonary stenosis. Had a couple open hearts as a child - doing well ever since! I'll look forward to getting to know everyone on in this cool little team (I'm actually glad it's a small team so we can get to know one another better!) Take care! <BR> <BR> Katrina Fri, 10 Aug 2007 21:53:07 EST Hi I just joined this group. I am 40 yrs old a mom to 7 kids and a grandma to 11. Our 3 older daughters are my step daughters (his children). (all over the age of 20 now). The last 4 are ours. One of which has a congential heart disease. She is now 15 yrs old and has already had 4 open heart surgeries to correct her condition. For the most part she is doing great. Just the off days she has now and then. As she grows and understands her condition the more stressed i see her get. Its hard to expla... Mon, 6 Aug 2007 20:03:41 EST Hello Hello, I would like to introduce myself. I am a 38 year old mother of two fantastic teenagers (Aaron 17, Katie 16), two very spoiled cats and one crazy Pomeranian puppy. I am joining this group because I have just been told that I have a leak in my mitral valve. I have an appointment with the cardiologist in two weeks, but I have been really stressed about this and need to talk to people who understand heart problems. My mother also has valve problems., She has had her aortic valve replac... Tue, 10 Jul 2007 08:54:33 EST