Hi,Anybody here living with a thoracic aortic aneurysm , or had surgery for one and or aortic root / valve repair. ? Keen to hear how it went for you ; any symptoms/ pain. ? How was the surgery and recovery. Got my op in a few weeks time so any advice would really help.
Thanks
If you're on Facebook, probably the best group is called "Thoracic Aortic Aneurysm Discussion Group Questions and Answers Blog Help" (!)
Thanks Cliff
I have an ascending aortic aneurysm which measures just under 4 cM but luckily it hasn’t got any larger - I’m just having mine monitored at the present time. But I have undergone open heart surgery in the past for an aortic valve replacement as I was born with Congenital Heart Disease.
You're a veteran Rosie ! Thanks for getting back
3 years ago, I got to enjoy a “David’s Procedure” - in which my Ascending Aorta (of between 7 & 8 cm) had to be removed, remodelled, repaired and then reassembled. My AV was fine, just overstretched by my dilated Aorta. I was also to enjoyed 3 x CABG.
The operation, apparently, went without a hitch, although I was the lucky one to sign up for all the post op complications. The thing I still remember from my experience is just ‘how routine’ they made the whole process seem - even though it is essentially OSH!!!
Each of us responds differently to surgery due to a whole range of variables - the most important one affecting me when I had the op, I had an expected lifespan of only 3 months, 4 if I was lucky. Any surgery is scary, especially where survival is not guaranteed - but my view on the issue is rather simple: if you don’t have the surgery, you will die! With the surgery there is a very good chance that you will get to live an extended life to enjoy 👍
Thanks Brand. You talk sense !
Hi, I had OHS for a mechanical aortic vve and a patch on my ascending aorta 4 years ago at age 49. Was fairly fit at time and now run a 5k faster than pre surgery and up munroes no bother. I took the recovery easy and built up slowly and listened to my body, I had nearly died pre surgery whilst doing a Parkrun and had the CPR to recover from too.My expectations of the surgery were a lot worse than it actually was but everyone is different. Although fitter now than previously I still can't sleep on my left side so still side effects but in general life is good and back to normal.
Hope your op goeas well and take care.
Andy
Thanks Andy. Great to hear you did so well
hi silver surfer. The info on the face book page is very helpful. I had surgery on a Thursday morning and was up in a chair next day and walking tentatively the next. Left hospital on the Monday following. Yes your sternum will be sore and you have chest drains in and probably pacing wires and a catheter. You will have to sleep on your back. I would take a V pillow into hospital and have pjs that button up the front. At home take care re lifting etc. Dm me for anything
Thanks Rob . Good shout on the V pillow ! And thanks for the offer of further advice. I'm sure I'll have more questions as the day approaches.
Cheers
Dean
Is your valve definitely going to be changed. I have a congenital bicuspid valve and we thought it may have to be changed but it is functionally working very well so wasn’t changed. As they are opening you up are you having your left atrial appendage closed?
Yep. The valve is being changed Rob. I have a bicuspid valve with mild stenosis and moderate regurgitation. No mention of left atrial appendage , but they are doing a partial arch replacement and sorting the dilatation at the root
Thanks. I guess you have thought through the Tissue or mechanical decision?
I have Rob
and I've gone with tissue. Chiefly because I was ambivalent about a lifetime on warfarin, but also the ticking of mech valves ( I'm someone who can't sleep if there's a dripping tap behind a closed door two floors away !)
I'm hopeful that the Inspiris Resilia valve lasts as long as the bench testing suggests, or if not, then 10 - 15 years down the line it's simply a TAVI to replace.
Good thinking and that was my decision as well if valve had to be replaced. Does anyone know if you can TAVI your natural aortic valve or can you only TAVI a replacement?
Two year gone August I had a mechanical valve fitted and the ascending Aorta was repaired.Recovery was slow taking 1 day at a time, I felt exhausted just having a shower at first.
After a couple of days at home I started going out for daily walks increasing the distance every couple of days.
I am now doing 50 mile bike rides and climbing the Wainwrights.
It's a big op and things take their time to heal so don't over do it.
A rolled up towel is good for holding against your chest when coughing etc.
Good luck
Thanks for getting back. And for the encouraging words. 50 mile bike rides is impressive ! I don't think I cycled that many miles in my whole life !
Hi Silversurfer,
I had open heart surgery in May after a dissected abdominal aorta resulted in energency surgery to fit a graft. Recovery, once you get out of hospital is fairly quick. I recommend a v shaped pillow and get walking as soon as possible to aid recovery.
I was opposed to taking pain killers, especially morphine, but it does help you regain your oxygen levels and get mobile so sensible to take them initially.
Good luck, hope it all goes smoothly.
Thanks for getting back Nk....and great to hear to came through ok. I'm hearing `V' shaped pillows more and more from people. Dunelm beckons !
I don't know whether your valve repair can be managed by a "Tavi" procedure, threading a replacement valve along an artery accessed by a small groin puncture ? If so, the procedure is safe, short recovery time and (failing snags such as blood clots on the new valve - as in my case) results in rapid alleviation of breathlessness and dizziness.
In any case,
best of luck
Tavishock
Thanks TAVIshock, I'm sure it could be, but they are going in OHS because my aortic arch and aortic root need dealing with, so they'll sort the valve that way.
Thanks for the best wishes , I'm expecting a date for surgery any day soon !
Having just passed 5 years since my diagnosis with an ascending aortic aneurysm, I'm still in watch and wait - and hoping for less drastic surgery, if or when it's needed, than you are facing.
An operation at a time of your own - and your surgeon's - choosing is vastly preferable to any kind of emergency procedure, so I am glad you are in a position to make that choice.
Getting things in place for your return home after surgery, such as the pillow, the recliner or whatever works best for you, and perhaps even practicing sleeping on your back with it before the operation, is one really valuable thing.
Another 'pre-hab' focus might be doing regular practice at getting out of a chair without using your arms; you can work on this by sitting down in a controlled way onto chairs/benches of different heights (higher is easier, lower is harder) also without using your arms.
Talk to the medical team before your operation about any support that might be available by way of cardiac rehab, to exercise in a supervised way to build up your confidence. Also maybe find out how you and they would manage any issues with atrial fibrillation, which is quite common after any major surgery and can sometimes be a bit scary especially if you haven't had it before - though it's treatable and usually goes away.
On the more positive side, maybe look for and plan some routes for local walks, to get outdoors and moving as soon as you can, to rebuild your fitness.
All the very best!
Thanks Julian. Very sound advice and very much appreciated. I'll keep everyone posted as to how it all goes for me
I had an aortic dissection when I was 30. I had my aortic valve replaced with a mechanical valve. I also had a 6cm aneurysm repaired with the ascending aorta grafted. Because of the tear it also affected my descending thoracic. It was believed to be congenital... years later it affected my son as well. At 45.. I had to have my arch repaired.I am now 63, & I will tell you.. I have done everything in my life that I have wanted to do in spite of my health! Take it slow after surgery. Listen to your body... only you know how you feel! I had no pain in the incision area... just an overall beat up feeling. It's a very big surgery... not to be taken lightly. However, healing takes time.. think positive thoughts & get up & move.... even when you really rather not!😊 Good luck!
Thanks for getting back Jmarina. Incredible that you've coped with so much ! You're positivity is a big help. Many thanks
Thoracic aortic aneurysm.
Thoracic Aortic Aneurysm
Thoracic aortic aneurysm 
Bicuspid valve and aortic aneurysm
