http://www.mdjunction.com/forums/congenital-heart-disease-discussions/feed http://www.mdjunction.com/forums/congenital-heart-disease-discussions/feed en-us Copyright (C) MDJunction.com. All rights reserved. Sat, 18 May 2013 03:32:13 -0700 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/lounge/10632204-still-among-the-land-of-the-living#10632204 Shockingly, I had a heart attack on Tuesday evening. The doctors called it a stress-related event . No doubt! I don't know how we survive our over-taxed lives?! So, I am home now and resting. Taking at least a week off of work, maybe two. Who knew that the mom of a heart kid would have a heart attack?! :-O I hope everyone else is doing well and keeping THEIR stress to a minimum. ~Mary... Sat, 20 Apr 2013 14:16:04 -0700 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/10604182-the-aftermath-of-our-cardiology-visit#10604182 While we were on spring break, I was able to get my son into see his pediatric cardiologist. For the most part, the visit went very well. Our PC was still very impressed with my son's coarctation repair, which he still calls perfect . That procedure -- repairing the aortic arch with my son's own pericardium tissue -- was a relatively new procedure (18 months in use) at the time it was performed on my son. Almost 15 years later, this repair looks like original equipment. :) What wasn't so... Sun, 07 Apr 2013 20:18:47 -0700 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/10489644-new-to-heart-forum-and-md-junction#10556011 Thanks for posting, Bluerabbit! I appreciate your input and your experiences. ~Mary... Sun, 17 Mar 2013 17:12:43 -0700 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/10509438-heart-defect#10514695 thank you for your kind words... Wed, 27 Feb 2013 11:45:24 -0800 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/10475722-mayo-clinic#10489626 Top rate information that my doctor never told me. Time of drinking water, amazing.... Sat, 16 Feb 2013 22:33:02 -0800 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/10425348-chd#10449529 your right about the colors mary, I dident realize it untill you mentioned it.... Fri, 01 Feb 2013 12:39:59 -0800 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/10277974-struggling-with-rare-chd#10279218 Hi FrizzyNinja, Thanks for joining us. I will give you the head's up. We are a VERY small CHD group, which makes us a rather inactive bunch (in spite of my efforts), AND I can almost guarantee that we have no L-TGA families here. (At least, none that I can remember in recent history.) I completely understand your position and how difficult and exhausting it would be to always fight for your right to hold your personal convictions. If you have investigated this fully and have a doctor w... Sat, 24 Nov 2012 08:38:19 -0800 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/10218132-has-anyone-had-a-pda-repair-in-late-childhood#10221778 hi FairyQueen, I think its time for a check up. Im surprised you havent seen a cardiologist sence you where 18.... Wed, 31 Oct 2012 12:51:04 -0700 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/10201457-energy-drinks#10211578 My eldest son had been drinking extremely large quantities of Red Bull while in college. When he went for one of his quarterly endocrine visits, his endocrinologist was FREAKING OUT! My son's liver panel was THRU the ROOF!!! Drinking excessive amounts of Red Bull was causing him liver damage. The doctor told my son to stop drinking Red Bull, or start preparing for his funeral. The numbers were THAT dramatic! My son stopped drinking all energy drinks and his next blood panel was almost ... Sat, 27 Oct 2012 17:28:34 -0700 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/10181924-special-link#10183270 Great link, Ben! Thanks for posting it. I really liked the some of their resource links they had on their site, like Bummer Bear ! That's awesome! ~Mary... Wed, 17 Oct 2012 18:16:55 -0700 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/378257-chd-and-developmental-delays/limitstart/10#10175251 I appreciate hearing from you both! It has been awhile. :) I do believe it seems to be pretty common for our kids to have language delays. At least it has seemed that way to me. My son also has had short-term memory issues. However, if we can get the information stored into long-term memory, he seems to do ok. He is very much a creature of habit, and he doesn't care to have his routine changed! He also has ADHD, but is unmedicated. I understand the frustrations. Some days it gets t... Sun, 14 Oct 2012 20:47:19 -0700 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/3534850-improper-asd-closure#10173737 My son's doctor has recently been talking more about doing open heart surgery to close my son's ASD. At one time they were going to wait and do it through a catheter, but now they think they will need to do it sooner. I was told he needed to be 40 pounds before they could do it with a catheter. Also, originally we were told he had two holes now they are saying there is one large hole. I'm am concerned that closing the hole will increase the regurgitation from is defective tricuspid vale. He has ... Sun, 14 Oct 2012 09:01:36 -0700 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/introductions-personal-stories/10080244-indian-with-ta#10125935 Umm, I am nt sure what the surgeries were called. One was the Fontan. But I do remember somehing about a Glenn shunt procedure? I am hopelessly ill-informed about my own defect (my mother handles my medical records) but I am seen by a cardiologist every year, sometimes more than once a year if I have developed intestinal infections or something. They are not the same doctors who operated on me or anything, because we had to come back to India, and in India, until a few years ago, it was very dif... Thu, 27 Sep 2012 00:33:20 -0700 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/10102262-new-but-not-to-mdj#10109221 Hi Ben, Thanks for joining our little group. Sorry I'm so slow to respond; it has been a busy week. I appreciate you lending a voice to our group. I'm sure your experiences will be a wonderful asset! My son 14 year old was born with severe congenital heart defects (Shone's Syndrome) and underwent two open heart surgeries before he was 2 months old. He is learning disabled, but not profoundly. He is considered to have a low normal IQ. I have suspected that he may have Williams Syndr... Thu, 20 Sep 2012 15:08:24 -0700 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/10056168-response-to-megans-post-on-tof-group#10071642 Hi Megan, I understand feeling helpless. There is no greater sense of helplessness than knowing that Mommy CAN'T fix it . You can't kiss it away, or hug it away, or medicate it away, or give your child a cookie to distract it away... NOTHING! We are all one in the same on this journey -- like a morbid spectator of a train wreck we can't stop. It is a helpless feeling, but it doesn't have to be a hopeless one. How did I do it? Only by the grace of God, truly. I don't think myself any... Thu, 06 Sep 2012 23:33:39 -0700 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/10005972-need-some-inspiration#10006575 Most moms I know have used Jeremiah 29:11, For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Though that is a great verse, and many moms have used it for their kids because it projects a positive future, I clung to other ones instead. I don't know how appropriate any of these would be for you to put on a wall, as they were personal to me and probably would mean nothing to you in your journey. Like , , a... Tue, 14 Aug 2012 12:46:10 -0700 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/introductions-personal-stories/409887-tetralogy-of-fallot#3559178 Thanks so much for posting! It is always encouraging to hear good reports. :) I'm sorry to say that I have no answer for you. My son has never had to use a bronchodilater, and my husband and daughter (who are both asthmatic) have never used Primatine. So, I really have had no experience with this product that could be beneficial to you. :( I hope that someone will jump in with an answer for you, but the likelihood of that is kind of slim, unfortunately. Since I've been the group leader... Tue, 13 Mar 2012 20:43:33 -0700 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/3541765-hello-im-new-here#3545424 I am so sorry it took so long for you to finally get a proper dx. :( I understand how frustrating that can be. I had hydrocephalus (water in/on the brain) all my life and it wasn't dx'ed until I was 37 years old! Oh my! That explained a LOT, too!:whistle: Did you have a closed heart procedure? I would imagine the recovery time for that should be pretty short and you should be feeling some improvement soon. Has your doctor given you any timeline for recovery? ~Mary... Thu, 08 Mar 2012 18:04:40 -0800 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/823541-asd-and-ndph-a-cure-2#3541772 i could not agree more.....i am 43 recent diagnosed with ASD. had sickening migranes since my late 20's. also being tired for no apparent reason. make them give you a stress echo.... Wed, 07 Mar 2012 10:55:43 -0800 http://www.mdjunction.com/forums/congenital-heart-disease-discussions/general-support/3461679-transposition-of-great-arteries-developmental-dela#3472019 Hi Krissie, Sorry for the delay. My laptop has been on the fritz, and I've been tied down to our home computer which has really limited my online time. Developmental delays are not uncommon with our kids following open heart surgeries. In the late '90s, there was a double-blinded drug study to evaluate a drug for use during open-heart surgery expressly to protect the brain while the patient was on by-pass. My son was one of the patients selected for the drug trial. Apparently, developm... Fri, 10 Feb 2012 18:08:10 -0800