Agi's Journal

Supreet Huilgol  Hi Agi, sorry to hear it and glad you are back to normal now. I am 33 yrs old male and have a moderately dilated proximal ascending aorta measuring 4.3 cm. I am told that once it crosses 5.5 cm, it will have to be replaced with a graft. In your case I think your doctor might monitor the dilation periodically to make sure it doesn’t dilate too much and cross the threshold. 

Supreet Huilgol  Yes I had Bicuspid aortic valve (congenital) and underwent mechanical valve replacement in 2006 when I was 16. At that time I didn’t have aortic dilation. 

Agi Dunec  When time comes will they have to open your chest to do your procedure , or they can do a Tavi? Are u on blood thinners?

Agi Dunec  Make sure u have the best surgeon and u should get second and third opinions.Please advocate for yourself.U are very young to have to deal with all this. Stay positive and everything will be fine.

Supreet Huilgol  Yes, thanks. I am planning to get 2nd and 3rd opinion from Joseph Bavaria at Penn Medicine and Eric Roselli, Marc Gillinov at Cleveland Clinic

Susan Lynn  Happy First Anniversary, Agi! Wishing you many, many decades of good health and future celebrations!!!

Martin Smith  Hi Agi from a fellow Canadian in London, Ontario. I just celebrated my one-year anniversary since my Ross procedure. About 6 weeks post-op I developed some disquieting new aches in my chest cavity. Doctors suspected possible pericarditis and prescribed me colchicine. I took it for about two weeks and the symptoms resolved. The doctors hadn't been confident about the pericarditis diagnosis, but erred on the side of caution. Immediately following surgery, however, the surgeon had prescribed Ibuprofen which I continued to take for every day for 5 months. I was concerned about the long-term effects of the ibuprofen and took the initiative to reduce, then eliminate the dosage.
Hope you're doing well! Glad to read that you're back to the activities you love.

Rose Madura  Hi Agi. I also had both. About 2 weeks after surgery, I was taken by ambulance to the hospital because my heart rate was 180 and my blood pressure 50/0. Long story short, I was very symptomatic to afib and my heart was in afib. My cardiologist saw that I had fluid buildup around my heart which was not of too much concern but again, I'm symptomatic. The surgeon was called and they scheduled another surgery in which they placed a pericardial window after draining 1 liter from around my heart. About 2-1/2 months later, I developed a horrible cough and fever and it was determined that I had fluid around my lungs which had to be removed. It was rough going but after that, I started feeling much better. Hang in there. Your body has been through a rough time. God bless you.

Shannon Gray  Hello! My story was very similar to Rose’s.. they drained 2 liters a week after my surgery through a pericardial window. I understand how frightening and frustrating this is. Take gentle care of yourself, follow the Drs thoughts on colchicine and medicines, try to keep heart rate as low as possible, even for a while after, and hopefully the Drs will know how to taper you off colchicine after a period of time. Wishing you all the best.

Agi Dunec  Thanks so much. I am very discouraged because I don’t feel well. Rose and Shannon thanks again. Stay safe and healthy. Sending u virtual hugs.❤️

Helge Volden  I had pericarditis two weeks after my surgery. My nurse who did home after care visits discovered the problem. Fortunately She insisted that the doctor look at it. They drained a liter of pericardial fluid. This underlines how important after care is! Listen to what the health care professionals tell you. All the best!

Shannon Gray  Please think about calling your Dr and letting them know how you’re feeling. It’s always important to stay on top of these things being so early in your recovery. I hope you’re feeling much better very soon.

Steven Methot  Hi Agi. I am in Calgary. I have heard nothing of Dr. Ouzonian, but I do know that the program she is associated with is one of the best in Canada. All I have read about her should put your mind at ease.

D MacLeod  Eastern Canada here, just had Aortic valve replacement surgery. After monitoring for 4 years I was told in June that it was time for surgery an$ that occurred in early Sept. The entire team was awesome. I am 5 weeks post op and getting stronger everyday.
Good luck with your surgery stay positive!

Agi Dunec  Thanks so much. Wishing u a speedy recovery.Do u feel any different then before the surgery. Are u able to exercise?

Marie Myers  I was 62 when I found out about my aortic aneurysm. I had known about my bicuspid aortic valve since my 20’s, but thankfully it never stopped me from a very active life. Like you, I was shocked when my newly acquired cardiologist told me surgery was “inevitable” for me. I had no symptoms! Fast forward 3+ years, and I am the proud owner of a new aortic bovine valve, aortic root, and ascending aorta. I am back to all my desired activities and work. While the surgery was no “walk in the park”, It was not as awful as I had worried it would be. Pain was minimal for me, and I was well enough to go back to work 2 days a week at 2 months post surgery. Because you are active and in good physical shape, you will do well. I wish I had worried less about the whole experience, but I am only human. And a worrier... Feel free to ask any questions you may have. Lots of people have been through your exact surgery, and we are happy to share our thoughts.

William Trankle  By the time you have symptoms your heart is already damaged, so you're lucky your cardiologist was on the ball. It's not an easy experience, but the fact that you're active and healthy will definitely make it easier. My only advice is TAKE YOUR TIME. Recovery is a process, and you will have days where you feel depressed or frustrated because you're not back to normal yet. Just relax an let the healing happen. Good luck.

Rose Madura  Your title said it all.."My Journey". It's a shock for sure and now you. Begin the journey. It's not easy but you can do it. I would suggest a 2nd opinion. And I agree with William. Waiting for symptoms is a no-no nowadays and old school thinking. Let us know if you have any questions.

Agi Dunec  Reading some people’s journey after surgery is giving me a lot of anxiety and worry. I am just waiting for the surgery date, which most probably will be in October.I am really scared because despite my disease I can play tennis , folk dance for 2hrs and walk at least for 1 hr so I hate trading in my current life for the unknown.I can pretty much do anything I want even though my cardiologist told me my disease is very advanced.

Agi Dunec  I got a date for my surgery. It’s Friday October 30th. I feel relieved and scared .I am hoping for a positive outcome.

Agi Dunec  I
have my surgery tomorrow. Scared but I have a lot of love and support.Wish me good luck.!Thanks Agi