The Knowledge Board:
Cardiovascular Disease
Hi I'm Belinda I'm your community manager at The Patients Voice.
If you would like to leave a comment please click on link at the bottom of the page.
You can reach me at belinda.shale@healthcarelandscape.com.
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The onset of heart disease whether it be a case of Chronic heart disease (CHD), Congenital heart disease or Cardiomyopathyis, is no doubt overwhelming and represents a life changing experience to those affected.
Scientists have yet to unravel all of the causes of heart disease. However, certain risk factors are said to increase the likelihood of developing it. These include factors such as age, gender, genetics or ethnic group. The risk factors we do have some control over include what we eat, our smoking habits, and the amount of exercise we take.
This Blog seeks to explore the correlation between lifestyle and heart disease.
We would be grateful if you could share your experience by answering the questions below
1. What treatments do you follow for your condition?
2. In coping with the condition have you made any particular changes to your lifestyle?
These questions are only a guide and so please feel free to bring up any other issues that you feel are relevant to you. Also, please do add any other sources of information or support that you have found useful.
Thanks very much in advance for your help. Remember, a blog is really like having a conversation with lots of people at the same time and so please check back on the blog to see what others have said so that if you feel like adding to their thoughts you can. It's a conversation and a chance to learn and share!
I look forward to reading your comments and, of course, thank you very much for your input.
claire oliver | 03/05/2008 15:07:00
my daughter rachael was diagnosed with dilated cardiomyopathy and heart failure in 2006, aged 1 year old, she had an arrythmia, fluid on lungs liver and kidneys as well as everywhere else, the docs gave her a week then she would need a heart transplant, but a miracle happened and she responded to medication, captopril, sytron, frusemide,spironolactone,aspirin digoxin and carvedilol, in november last year she had an echo which showed her fs was at 42 it was below 8% when she first went to hospital, she was allowed to come off the aspirin, spironolactone and carvedilol, we are now waiting to see on the 15th of may if she can come off the rest of her meds as at her last echo her heart was within normal condition, im sharing this with you to show that there is some hope, rachael was very sick for a long time but her fighting spirit never let her down, my message to you all is never give up hope.
Jessica/Oliver | 12/05/2008 06:07:00
My son Oliver was diagnosed in utero at 22 weeks with Hypoplastic Left Heart Syndrome(HLHS). Four days after birth he had his first surgery (Hybrid approach as opposed to Norwood) done by Dr. Mark Galantowicz at Nationwide Children's Hospital in Columbus Ohio. Great surgeon, cannot say enough good things about him. He came through his first surgery pretty well and about 3 weeks later we went home. We went back for the second procedure when he was just a few days short of 6 months old. He did well, but unfortunately suffered a pulmonary embolism in his left PA. Doctors tried to remove it (cath procedure) and a piece broke off blocking the other lung as well. He was in cardiac arrest for a half hour and suffered a stroke. They got him back but didn't expect him to live. He was put into an induced coma in hopes of reducing brain swelling (typically used for car accident victims who suffer brain injury). For about 3 days straight he survived with saturations in the low twenties and late teens...He finally woke up after three weeks, and they said he would be a vegetable. 20% of his cerebellum is dead, and the rest of his brain was severely injured. I'm happy to report he is now 13 months old, and while very behind physically seems to be fine mentally. He is on 1 liter of oxygen (clot is still in the left PA) and his saturations run in between 75-85%. He is also primarily G-tube fed, as a result of losing coordination after his storke. We are working to get him drinking from a sippy cup and eating baby foods. He receives speech therapy once week and OT and PT once a month. He on is different meds for everything (Enalopril for his heart, Keppra for seizures, Lasix for fluid retention, Zantac, and we are weening from Clonidine...Neuro thought he would "stiffen" but he hasn't.) He is on two shots of Lovenox per day as well, although his hemoglobin typically stays above 20 (23.2 at last check) keeping him at risk for new blood clots....He is theraputic on Lovenox though (9.5mg each shot) Sometime in about a year Oliver will undergo his third (and hopefully final) surgery. At this time his surgeon is also hoping to be able to extract the clot blocking his left lung and at that time he will hopefully be able to go home without oxygen. Right now we just make sure to give him his meds and he receives therapy to "catch him up" developmentally. He's on 27 cal formula (Similac Alimentum). Other than that, he's not on a "special" diet. From a heart stand point, his cardiologist (Dr. Cua, also at Children's) just wants him to be eating healthy. His limitations are only because of lack of coordination. I know this is anonymous, but feel free to email if I've left anything out you may like to know. (jessicashelpman@hotmail.com) I'm also on MySpace, just search Jessica Shelpman. My MySpace page has pictures of Oliver from thirty seconds after birth all the way up to yesterday=) Hope this was helpful and feel free to contact me for anything else that may be
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