Shelley Bosveld - Heart Valve Journal

My Journal

760 days ago

Hi everyone, I had a ross procedure and aortic aneurysm repair on April 10. I have now been told that my tricuspid valve needs urgent repair. The chords holding ...Read more

Hi everyone, I had a ross procedure and aortic aneurysm repair on April 10. I have now been told that my tricuspid valve needs urgent repair. The chords holding one of the leaflets are no longer connected, making the regurgitation severe. Surgery is scheduled for Monday May 8, which is 4 weeks after the first OHS. Has anyone else had this happen? Any advice about such back to back OHS? I am feeling quite numb about heading back to the OR.

Roselyn Kubek Hi Shelley, I have no advice to give. Just want to send my best wishes to you. I can’t imagine bac ... Read more

Roselyn Kubek Hi Shelley, I have no advice to give. Just want to send my best wishes to you. I can’t imagine back to back surgeries, and I’m sorry to hear you are facing this. Strength.

Kathy Ozio I am so sorry to hear this and will be praying for you! 🙏

Marie Myers I am so sorry to hear about your need for a second surgery so soon! Praying for strength for you.

Annette Sterzel Thoughts and prayers are with you. The hardest part is fear of not waking up the rest is fine. Just k ... Read more

Annette Sterzel Thoughts and prayers are with you. The hardest part is fear of not waking up the rest is fine. Just keep thinking you want to live a good life. 🙏🙏🙏

Grace Mason Shelley, I am sorry you are having to face this news right after your first surgery. Sending prayers... Read more

Grace Mason Shelley, I am sorry you are having to face this news right after your first surgery. Sending prayers for your next surgery

Rose Madura Shelly, I can't imagine what this is like for you. I'm so sorry you have to endure another surgery so ... Read more

Rose Madura Shelly, I can't imagine what this is like for you. I'm so sorry you have to endure another surgery so soon. God bless you. Please keep us posted.

Klara Čičić Shelly, I am so sorry this is happening, but I see you are a strong women who will endure this and s... Read more

Klara Čičić Shelly, I am so sorry this is happening, but I see you are a strong women who will endure this and survive it and get even stronger! You can do this!

Diane Pellowe My goodness, that’s a lot to process. Best of luck with the upcoming repair!

Shelley Bosveldposted an update

816 days ago

I am wondering if anyone was sent for genetic testing after aortic valve replacement and aorta replacement correcting an ascending aortic aneurysm. My surgeon ...Read more

I am wondering if anyone was sent for genetic testing after aortic valve replacement and aorta replacement correcting an ascending aortic aneurysm. My surgeon plans have me seen by the genetics clinic because of the "association of ascending aorta aneurysm with connective tissue disorders". I have since discovered that a first cousin and son have vascular Ehlers-Danlos Syndrome. Does anyone have Ehler's-Danlos Syndrome? Did it change anything about the surgery? I live in Canada. If I wait til the Surgeon refers me, the testing will be free. I could possibly find a private clinic and pay to have it done before my surgery. My surgery is planned for "end of March/early April". Angiogram is next Friday March 17. My cousin cautioned about the fragility of blood vessels in those diagnosed with vEDS. I am deciding whether or not I should pursue finding out early, or relax now and have it done later on.

Greg Lewis Hi Shelley! What is genetic testing? And I also live in Canada.

susan sperry I don't know where, but I thought I read that genetic testing is expensive. And I'd check on how lon ... Read more

susan sperry I don't know where, but I thought I read that genetic testing is expensive. And I'd check on how long it takes. You said your surgery is soon.

Richard Munson Greg, i have been wanting you to get genetically tested for awhile now. To check for any moose genes. ... Read more

Richard Munson Greg, i have been wanting you to get genetically tested for awhile now. To check for any moose genes. Just teasing of course.

Shelley Bosveld Greg, Genetic testing would be a blood test or saliva test to check for mutations in genes that get p ... Read more

Shelley Bosveld Greg, Genetic testing would be a blood test or saliva test to check for mutations in genes that get passed from one generation to another. Ehlers-Danlos Syndrome is caused by a mutation of one of 13 genes. Only one causes vascular EDS. But there are other inheritable connective tissue disorders associated with ascending aortic aneurysms. People can go their whole lives without knowing they have a connective tissue disorder, or symptoms can be debilitating. Discovered and named within the last 3 decades.

Grace Mason Hi Shelley,
My doctor offered genetic testing to look for connective tissue disease markers. I have a bicuspid aortic valve and an aneurysm on my ascending aorta and am 6' ft in height with a history of aneurysm in my paternal grandmother. I am also moving towards surgery but I am getting second and third opinions before I decide on the surgeon. I did not test positive for any of the known markers so I am not sure if it would alter surgical decisions. It was done by a group called Invitae and wasn't too expensive. It was about $150 -200. My insurance did not cover it. I know you are in Canada but thought you might be interested.

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