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Just wanted to say hello. My son also has Noonan Syndrome. He’s a 21 year old with AV Canal and pulmonary valve stenosis.

Hello bentleysmama, I’m a fellow Heart Mom who has been exactly where you are more times than I ever thought. My 21 year old son was born with AV Canal Defect and Pulmonary Valve Stenosis. He has endured 4 OHS at ages 10 months, 4 years, 7 years, and 15 years. To be honest, it is HARD!! As...

I’m so sorry Nik! That is really lousy to need this so soon after your most recent surgery. My son, aged 20, has something called Noonan Syndrome and like you, he has several medical issues (scoliosis, congenital heart, short stature, etc…) so lots of surgeries, doctor appointments, things to...

Hi Brodie, My son is just a few years younger than you and has had a mechanical valve since aged 4. While he doesn’t ride motorcycles or play contact sports, he is able to do most activities. I would very much like for him to wear a medical ID; however I haven’t been successful in convincing...

I’ve been shopping around for a supplier as well. I have Aetna and there is only one in-network provider (Acelis) whom I can no longer work with due to their rigid policies regarding the frequency and number of slides they will send. They refused to send me more supplies when my son had...

Hello there. I’m the parent of a 20 year old with a mechanical valve. He’s had 4 OHS and uses the Coaguchek to monitor his INR. It is very convenient and he’s been on warfarin since aged 4. Sending you best wishes on your surgery and recovery😊

Wow….double valve replacement and being the 3rd is no joke!! My son was still in the ICU a week after his double (it was his 4th OHS tho). Sending you the very best wishes for a nice, steady recovery❤️

I passed your message along to my 20 year old son with a mechanical mitral valve. Hopefully you’ll hear from him😊. Good luck on your project!

Hello there, My son is 20 years old and has had a mechanical valve since aged 4. He has required 4 OHS, his most recent at aged 15. His limitations include no contact sports and he needs to limit his weightlifting to lighter weights. He does not avoid any foods due to his anticoagulant. He...

Best Wishes!! Please update us. This heart mom is praying for a great outcome for your little one❤️

Once my son hit adulthood, his cardiologist added aspirin to his warfarin. Initially I was very surprised and uneasy but once it was explained that it improves the anticoagulant therapy, we went along with it. He’s had no issues that I’m aware of.

I have had good luck with Roche replacing our meter when it was not sufficiently calibrating with lab results. Your situation is more serious in that you are getting no results. Ask for a replacement.

This is a little off topic but I am looking for a new supplier in North America for Coagucheck XS supplies. My current supplier, Acelis, will not fulfill an order less than 76 days from the previous order. Despite my best efforts to explain that my son had surgery and is trying to get back in...

I’m the parent of a 20 year old with congenital heart defects. He has had 4 OHS😳. I read a study recently about stress. The researchers used mothers of children with heart defects as subjects as they are considered to be chronically stressed!! I can attest to that. Exercise has been the...

I know how scary this is for the family. I too, have a child who had surgery in infancy and 3 more throughout childhood. It’s not an easy road but outcomes keep improving. It sounds as if you are at a great institution and your family will be in good hands. By the way, my son is a college...

My son is 20 and has been in Warfarin for 15 years. I tend to agree with you that in the event of a bleed, he’d be at a hospital being tested and treated. On the other hand, if he’s a little out of range, the machine and supplies can be sent with him in the event he needs to test while away...

My son, aged 20, has 2 prosthetic valves (one tissue and one mechanical). He has had 4 OHS (1) Septal defect closure and pulmonary valvotomy in 2003 (2) placement of St Jude’s mechanical in the mitral position and homograft in the pulmonary in 2007 (3) failure of homograft which was replaced by...

Hello there. I am a fellow mom with a kid on Warfarin. My son, aged 20, has had quite a journey which included a mitral valve replacement at aged 4. He’s been on Warfarin for the past 15 years and I do understand your worry!! In those 15 years, we have had only 3 instances in which there...

I think it depends on your insurer. We are in the US and my son’s monitor and supplies are covered under insurance. We just pay the 10% copay.

What you experienced was traumatic and certainly your nervous system may be overly active as a result. I am not a patient but the parent of a heart patient and I experienced nightmares about my son dying in various ways. These continued for about 2 months following one of his surgeries. I...