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LOL! I didn't think of that! My doc and I have a "discussion" about it every 2 or 3 years (he keeps thinking I will change my mind). Next time he brings that dumb test up to me again, that's what I'm going to tell him!

I had a sleep study once too. First off, who can sleep with all their "rules"? If they want to get a good study, then they need to let you do what you normally do. Like you, I don't normally go to bed until after 11:00 pm and I usually have the TV on. But I had to go to bed at 10:00 or 10:30...

Hi J.....Welcome aboard from another TOF patient. I am about your age....maybe a little older. I never had the BT shunt. But I had a complete intra-cardiac TOF repair in 1959 when I was very young. Then I had to have a pulmonary valve placed in 2005 which is when I found this place. I have found...

LL, I don't know if this is the same test or not but I have had a stress test that my ACHD clinic calls a V02 Max stress test that sounds like what you are describing. It can be done on either the treadmill or the bicycle....my ACHD clinic uses the bicycle. They put a mask over your mouth and...

LL, I also have TOF. Please check out the Adult Congenital Heart Association (ACHA) at www.achaheart.org. I have to agree with Kim.....you should definitely seek out a cardiologist that specializes in ACHD. The American College of Cardiology now recognizes ACHD as a subspecialty of cardiology...

Sharlea, I also have Tetrology of Fallot. I am glad your daughter in law is seeing an adult congenital specialist.....it is very important. I go to the ACHD clinic at Stanford. I had my pulmonary valve replaced about 5 1/2 years ago at Stanford University by Dr. Frank Hanley. They originally...

Mntbiker, Tell your friend to check out the Adult Congenital Heart Association at www.achaheart.org. It is an organization that is dedicated to those who were born with heart defects such as holes in the heart. There is a clinic listing on the website where your wife's friend can find...

Well my cultures were negative on Friday but I woke up running a low grade temp yesterday. For the past 2 weeks, I have felt like I hit a brick wall and didn't have the energy to go around it, getting SOB everytime I tried. Now I feel like I have been splatted against that wall and need...

Nupur, I have a cardiologist at Stanford. I haven't seen the surgeon since being discharged from the hospital after my surgery but I see the cardiologist annually. I sent you a PM with his name. Good Luck....Hope you get some answers for your symptoms! ~Diane

Nupur, I think it depends on your doctor and your risk factors. I have not had a fever. I actually only have 4 or 5 of the 12 to 15 symptoms that I found listed on Medline (I think that was the site I was on). But I have congenital heart disease and an artificial pulmonary valve. I emailed my...

I have been feeling bad.....lots of shortness of breath...... for over a week now. I am currently waiting for cultures for endocarditis to come back and praying that they are negative. If they are positive, I don't know how I got it. I had my routine dental cleaning a couple of months ago and...

Cheryl, I am a 1st generation TOF survivor.....I had the 50th anniversary of my TOF repair earlier this month. I totally understand why you are shocked and upset. I was fortunate in that I had a very good result from my original surgery and had no real problems / complications for most of my...

Hi Daniel, I am also a congenital heart patient. My parents had to send me to surgery for TOF repair in 1959 when it was still an experimental procedure. I am certain it was probably the hardest thing they ever had to do as a parent. But medical technology today has advanced hundreds of times...

While I am one of the ones that had experimental surgery in those early days (1959), the brave ones were my parents.....not me. I was only 22 months old so I didn't have to make the choice of whether to have OHS or not. I can't imagine what my parents must have gone through. Their choice was...

Yes, I am talking about the engraving on the back where all of my medical info and my MedicAlert ID # is. I did call and complain and I also sent an email complaint. I also asked if there was anything I could use on it or clean it with that would make the engraving come back out. They were...

Medic Alert has several things on sale right now. The 10K gold filled one that I have is $10 off the regular price. I agree that you should buy from a reputable organization......but how much more reputable can you get than Medic Alert? I don't have a problem replacing my bracelet once in a...

I noticed that the engraving had faded away on my 10K gold-filled bracelet after only 14 or 15 months. They are warranted for 1 year....wouldn't you know! I also paid about $80 for mine. I certainly would not order a 14K gold one to the tune of $500 - $700 knowing how much the engraving...

There is a day. Congenital Heart Awareness day is Feb 14th. Actually, the American Heart Association focuses mainly on acquired heart disease.....they do very little for congenital heart disease. They are trying to get more involved with CHD though. The focus of our local annual AHA heart...

Belen, Do you know which cardiologist you are going to see at Stanford? I see Dr. Dan Murphy for my cardiologist at Stanford. Dr. Murphy sees both pediatric and adult CHD pts. I think he is an awesome doc with a good sense of humor as well as a good bedside manner. I don't know anything...

Belen, I am an adult CHD'er. I had surgery at Stanford 4 years ago to have my pulmonary valve replaced. My surgeon was Dr. Frank Hanley. Dr. Hanley is one of the top CHD surgeons in the country. I don't think you would go wrong with a consultation at LPCH. Let me know if I can answer any...