Hi All,
I am a 35 year old male from the UK (Manchester).
I recently came across the site and have been reading with great interest the stories and experiences ...Read more
Hi All,
I am a 35 year old male from the UK (Manchester).
I recently came across the site and have been reading with great interest the stories and experiences of other users within the community. My story is still at a relatively early stage compared to many bloggers, but thought I would share as its progresses!
I was diagnosed with Mild Aortic Regurgitation around ten years ago in my mid-twenties, to be honest haven’t given it much thought over the first nine years, just a yearly appointment at the cardiologist and a quick echo to check if or how is progressing.
Never really noticed any symptoms but it’s relatively tricky to tell as I have asthma. I have played lacrosse for the past twenty years without interruption apart from the odd dislocation or sprain so didn’t credit the heart with having any effect.
Things changed around twenty months ago when I saw the consultant’s registrar who asked if I knew the cause of the regurgitation, to be honest as its congenital it never gave it much thought! He referred me to a specialist consultant within the hospital who ran a TOE / Exercise tolerance test and an MRI.
Suddenly it became real, my condition has progressed from mild to moderately severe and my heart isn't straight forward as it has a right sided Aortic Arch, (apparently 0.05 of population have this), and a partial sling coupled with mild aortic stenosis and an aneurysm where a hole in the heart healed as a child). My cardiologist is excellent and he has reassured me that it will be monitored closely, (due to complications he is would like to delay as long as possible). The operation when it comes will be a Valve replacement coupled with Aortic root replacement.
12 months down the line and just had my latest appointment, (after forgetting my condition for a year), I am being sent for an MRI in the next 6 weeks with the possibility of surgery in the next twelve months (fingers crossed it not).
I have never really worried however things in life have changed and I now have a 2 year old boy who means the world! For the first time I do have concerns and am keen to share them with people who have been in similar situations! Was keen to also find out if patients have had a valve replacement whilst having a right sided arch and if this has an effect?
All the best and good luck to everyone!!
Rich
Welcome to this group, Rich! We all have been a support for one another and now we hope you feel supp ... Read more
Welcome to this group, Rich! We all have been a support for one another and now we hope you feel supported through this process. I had aortic valve replacement via mini sternotomy on December 1st with a tissue valve. I take 81 mg of baby aspirin daily and that is it. I started cardiac rehab soon after surgery and I feel stronger every day! I have two children (6 & 9) so the idea of surgery scared me. Read My Story for more info and feel free to post a guestbook entry with any questions.
Richard Fairclough-Rushton Hi Laura, thanks for commenting so quickly, I actually read your journal with great interest last night. It was one of the reasons i decided to start to post myself. I am so glad the op went well and your recovery seems to be on track! I did love the post of the family making pillows, thought that was great and surely and surely a big comfort. If I have any questions I will bob over an email. Thanks Rich
Sophia Ridley I should have added to my post that I'm more than happy to answer questions, especially as I've have ... Read more
Sophia Ridley I should have added to my post that I'm more than happy to answer questions, especially as I've have my surgery in UK. It was funded, but all treatment through NHS hospital.
I'll have to defer to Laura and other aortic valve patients on valve specific questions.
Richard Fairclough-Rushton Hi Sophia. like Laura I had read your blog over the last 48 hours. I noticed the Union Jack in the profile pic and thought it would be good to have a look. I am pleased the op went well but sounds like you have had a time of things since with the AF and the the ongoing quest for a good nights sleep. I appreciate the note. It looks like things suddenly progressed for you, mine has been steady but am on the cusp at the moment. I an crossing my fingers I get another year after the MRI, bit thought it would be worth reaching out before. Peoples experiences have been really valuable already!
W. Carter Welcome to the forum! It's never good when life deals us a bad hand, but all you can do now is get yo ... Read more
W. Carter Welcome to the forum! It's never good when life deals us a bad hand, but all you can do now is get yourself fixed so you can continue to take care of your family.
Sophia Ridley Hi Richard, when I read about aorta root replacement reminded me of this site I came across (I have E ... Read more
Sophia Ridley Hi Richard, when I read about aorta root replacement reminded me of this site I came across (I have EDS Hypermobility so sometimes research strays onto Marfan).
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Paul Doria Richard, I'm nearly in an identical situation to yourself. I am 41 and like to think I keep myself f ... Read more
Paul Doria Richard, I'm nearly in an identical situation to yourself. I am 41 and like to think I keep myself fit, but 5 years ago I was diagnosed with a faulty aortic valve which would require to be monitored. Thought nothing of it but now they have found my aorta is enlarged and I may need a root and valve replacement. I have a 2 year old son who means the world to me. I can't get the thought of open heart surgery out my mind and thinking the worst. But reading the posts from this site and all the successful stories helps me and fills me with confidence that it will be ok
Richard Fairclough-Rushton Hi Paul, it does sound a very similar situation indeed! It only recently started to sink in that I am going to need surgery, I didn't think it would really come round as its always been see you in another year. I am still hoping my MRI comes back without a great change but have a feeling it will be this year. I couldn't believe what happens with valve / root replacement when I read about the operation and it terrified me. However just like you the site has been a great source of inspiration and has helped me have a bit of a reality check at the same time. Yes when it comes I will have to make some significant life style adjustments but without the Op the prognosis isn't great so just have to face up to it. I think having a little one just makes it very real. Hope all goes well for you
I'll have to defer to Laura and other aortic valve patients on valve specific questions.
http://www.marfanaorticrootsupport.org/updates.html
Obviously I have no idea of your medical needs but thought what they were doing was rather fascinating.
Paul
Rich