anita's Journal

To those who are on the journey to getting an aortic valve replacement - I am living proof that all turns out just fine. My surgery was done on November 16 2015 - I am now pumping through spin class with ease, strength training, working full time, and living all the delights and frustrations normal life throws at us...

You have EVERY REASON to believe this will be you too! Breathe, be thankful that a "fix" exists (as challenging as it may be at times) and know that your life will be yours again.

Be hopeful, be strong, and believe you will come out the other side of this.

Best wishes everyone!

Hey everyone out there - just want to let you all know that there is life after valve surgery! It's coming up to 18 months since my aortic valve replacement and my ascending aortic aneurysm repair - and I feel great. I go to the gym at least three times a week, work full time, golf, and even do spin classes. I have no chest pain, can catch my breath easily after a workout and generally have my life back. Have courage! Have faith! The chances are absolutely excellent that you will be where I am in the future. Sending hugs and good wishes to all!

I just want to reassure anyone starting out on this scary path, and put you at ease, at least as much as possible. I have been living with my new bovine aortic valve and repaired ascending aortic aneurysm for more then a year; my surgery was November 16, 2015. I can now walk up hills without chest pain and laboured breathing. I have done spin classes, hiked 10 km, and been to many yoga classes in the past year. I felt the sun on my skin in the summer while swimming in Georgian Bay (Lake Huron) and felt the first snow flakes just this past week.

Yes, this journey isn't easy, but it's worth it. You will be stronger for it, and you will feel the joy of being alive. Just breathe, try to relax, do what your doctors tell you to do, expect some bumps in the road but have faith you will continue stepping down the path. Good luck everyone, and may you find some peace in every day. That was one of my goals when I was waiting.... and waiting... Now I live for today and still try to find peace in the days God gives me. Happy belated Thanksgiving to our American friends. Life is a gift we should all be thankful for :)

Going back to work (just afternoons) on Monday - I can't believe Monday will be 9 weeks. I have a desk job so this is not surprising. My biggest concern will be the stress from office politics and drama. Certain personality types can be difficult as well.

I am in the process of getting going with cardio rehab. My boss has been wonderful and is allowing me the two mornings per week (Tues and Thurs) for the 12 weeks it takes. I am also going to change my hours to 10am to 6pm, after the two weeks are up, to allow for exercise time. I see how important it is to carve out time for this, so I am making it a priority, as well as losing quite a bit of weight -

This is a year long process. I understand there is no fast way through this.

My cardiologist allowed me to discontinue my beta blocker, thankfully. He had me wear a Holter Monitor for 48 hours and said if I don't hear from him I would see him next year. I just have one more hurdle with doctors, that being the surgeon in a few weeks. Don't have that appt yet, but I anticipate it will go well. The one thing I have discovered is I have developed "white coat syndrome". I tend to be high strung (I admit to having anxiety) and having gone through this just made it worse at times. Having my blood pressure taken in a doctor's office hasn't gone well for me lately. I have been monitoring my blood pressure at home and its normal for someone not on meds. I am only taking aspirin and iron for anemia that I have had for a few years (stemming from something else altogether, the surgery made it worse of course).

I am starting to feel like my life is coming back.

So we will see how the next phase turns out...

I just wanted to reassure everyone that has impending surgery - you will make it! I feel really good, considering I had open heart surgery via sternotomy to replace my aortic valve and repair an aortic aneurism just 5 weeks ago. I know our journeys are unique and we all do this our own way. My advice for anyone who is going through this is to be patient with yourself, and try to be grateful every day. Attitude means so much. Some days are better then others, especially in the first 3 weeks - remain optimistic. You will come through this.

Is anyone on Beta Blockers post aortic replacement? I am on Metoprolol and am wondering how long I will have to be on them. The surgeon gave me a three month supply. Like usual, I read up on the side effects and now am worried about them. (shortness of breath, dizziness, light-headedness - I thought I was supposed to get rid of these symptoms lol)

I have been reading about hair loss as a side effect and wondering if anyone has experience with this? What are your experiences with this medication in general?

Thanks for any input,

Anita

It's so nice to be able to report that for the past couple of days I have started to feel pretty good... still tire easily of course, but in general, I feel so much better than a week ago today when I was released from hospital. Being home is very comfortable for me, although it does feel odd (psychologically) not to be going to work. I know physically I wouldn't be able to handle that - but being home in the daytime is such a novelty.

I hope everyone enjoyed their American Thanksgiving celebrations and were warmed with a sense of love and gratitude. Being Canadian and home from work I had a chance to watch the Macy's Thanksgiving Day parade for the first time in my life. I really enjoyed watching something "fun", especially after the tragic events in the world of late and my own little journey recovering from open heart surgery.

On a good note, my GP said I was doing fantastic, didn't continue the water pills or potassium, and said the incision looks very good and is healing well. Even though my own Thanksgiving celebration was more than a month ago, I truly feel full of gratitude today. We have so much to be thankful for.

Blessings to all of you,

Anita

Well, I did it. The surgery went very well, they replaced my aortic valve and part of my ascending aorta on the 16th. I got home Friday, and although I know this is a long journey back to wellness, I have hope that it is so doable. Is there pain? Yes. Will it be tolerable? Yes. Will you come home feeling encouraged? I did. I am doing my 6 times 5 minutes walks around the house to equal 30 minutes, have my little low-key exercise program to keep other stuff loose, and am trying to be a good girl with my diet. I am getting used to taking beta blockers, potassium, water pills, and lots of Tylenol extra strength. Yes they gave me a morphine based pain killer, but I haven't needed it so far. Passed on a chip and dip craving watching the Toronto Maple Leafs lose to Boston last night.... Did have to sleep in an easy chair last night after trying to sleep upstairs in bed, but I am just not ready for the flat bed yet and so be it. Just trying to accept where and who I am - have a great day, Anita Egden

Best wishes Kelly, Natalee, Roberta and Michael - may all go well with your surgeries; prayers and best wishes for health and vitality to be yours soon

Anita

OK, it was a little jarring to be told on Friday morning that my surgery was booked for Monday morning (November 16). I am past that now and ready to show up tomorrow at 6 am.

This has been quite a journey of self discovery, even though it's been a bit of a whirlwind. People have told me that this surgery will change my outlook on life. Things will be different, and the same. Maybe it's my attitude that is going to change as we are being given an extension - a second chance at life.

All will be well. Today I plan to take a drive to Georgian Bay and take in the view from the top of Blue Mountain (Collingwood Ontario) - something that awes me and quiets my chattering mind.

I have decided that I am going to take the time off work and really think about what I want that new life to be like... tomorrow morning I will say a prayer or two, and take comfort that I have a highly trained team of experts performing the surgery, and most importantly, that no matter what happens, heaven is watching over me, and I will be OK whatever the outcome.

Anita

So I will be going in for aortic valve replacement surgery (and maybe repairing the dilated ascending aorta) early Monday morning, this coming Monday the 16th of November. I received the call this morning before leaving for work....

It's really happening OMG

Yesterday my husband and I discussed my health condition on a long drive to see family out of town. So many things make sense now. We are (were) pretty active, going to the gym, hiking in all seasons (I live in Canada so yes snow shoeing comes to mind) and just the overall down hill progression of my health. Gasping on exertion... feeling light headed.... that nagging pulling sensation in my chest...

I was born with a bicuspid aortic valve and knew about it all my life. My current surgeon explained that when I was born (in 1964) patients with this congenital defect simply didn't live when it got to severe stenosis. As a kid I visited Toronto's Hospital for Sick Children frequently and then Toronto General when I turned 18. By puberty I was given the all clear to exercise but was so overweight and clumsy that sports were simply not part of my life. That's a whole story in itself, best left for another post. Suffice it to say that I don't remember not being out of breath on exertion so I didn't see the warning signs these past years as having anything to do with my heart defect.

In my young adulthood I lost the weight, got into a great marriage with my wonderful husband and raised 3 wonderful boys into men. I worked at my office jobs (still do) and continued on with my life pretty much ignoring my valve. If I felt tightening in my chest walking up hills, it felt the same as trying to run as a kid, I didn't think anything of it. Gasping for breath, feeling like I was going to pass out when touring the Columbia Ice Fields was simply the elevation getting to me as I live in Ontario and this was in the Rockies. Beating my numb hands on my legs when going up the ski lift was simply because I just easily got colder then everyone else on the ski lift, even if it wasn't particularly cold for that day (it may sound odd but we get acclimatized to the cold living in northern climates)

It was gasping for breath for longer than a minute during a spin class that really got me thinking "could it be?" Nah... then almost passing out at work a few times (thankfully I avoided the embarrassment of that actually happening and got a ride home) pushed me to go see my GP. That was March. I hadn't seen a cardiologist for 11 years and figured maybe we should rule out the bicuspid thing in trying to figure out why I was feeling so crappy. I didn't see the cardiologist until August 24...

He ordered and echo of his own, explaining he prefers to read them himself. They are so busy I didn't get back there until September 28. I sat there dumbfounded when he said the valve needs to be replaced. (duh I probably knew this deep down inside but refused to believe it) He ordered and angiogram to rule out coronary artery disease (arteries are healthy and clear) that was done Oct 5, saw the surgeon Oct 6, had the pre-op Oct 21 and here I am waiting for a surgery date...

It took awhile for the whole thing to settle, but I can honestly say it has settled and now I just want my life back. I want to climb hills, go to spin class, snowshoe in the winter, and enjoy my family. I want to go to work with a clear head - I feel so light headed all the time. Funny, this has been a slow progression but I have to admit it's been going on for awhile.

All of just slowly snuck up on me until I couldn't ignore it anymore. The alternative is grim. Not only did the surgeon explain my life expectancy without surgery is two years, I have come to realize it would be two years of feeling worse and worse and worse....

So now I am looking forward to getting this behind me, working diligently on my recovery, listening to the doctors and all the other health care professionals, and signing into to cardiac rehabilitation as soon as possible.

I am also busily training people at work so I don't have to worry about that part.

I am so ready to get this past me now

All went well with my pre-op. The pharmacist prescribed amiodarone to start taking 6 days before my surgery to help stave off atrial fibrillation - she said it was preventative. I have also booked a cleaning with my dentist and will take the penicillin before hand - this appointment is also required. My hospital won't schedule the surgery until a week beforehand. They do emergency operations there and as was explained there are too many variables to do anything farther out. I was told two or three weeks after pre-op is usual. So I guess I am looking at sometime near the second week of November. Ballpark

My pre-op scheduled for Oct 21 - I was wondering how long afterwards most people wait for their surgery?

I have signed the papers with the surgeon and we decided on a mechanical valve because I am 51 and really don't want this surgery again. In preparatory mode at work now, trying to sort out who will do what when I am away for 2 or 3 months. Also, I am trying to wrap my head around the fact that I will not be in control of my life during that time. I think this is the worst part of my acceptance, to let it be, let it happen, and just go with the journey...

I will know more next week, after I go for the surgery pre-op... also seeing my GP on Monday for his own "pre-op" (he has to fill out his own form that gets forwarded to the hospital)... This seems to have happened very fast but at the same time I just want it over now. I guess I am not very good at waiting for answers, and will have to change my whole outlook on life.

The other thing that is bothering me is that I am now a "life-long" heart patient, that I will never be "cured" so to speak, and that I have to be on warfarin for the rest of my life. This, of course, is not logical thinking as I have been a "heart patient" all my life, having been born with a bicuspid aortic valve. I guess it could be way worse; my surgeon explained that when I was born people with my condition didn't have a chance when aortic stenosis developed in their valve. My parents found out when I was a toddler that I had a bicuspid aortic valve - I remember going to "Sick Kids" in Toronto when I was very young, quite frequently. I eventually "grew out of it" (not really, it just became asymptomatic) until these last few years. Now these surgeries are done all the time.

We are lucky that our lives can be extended - and I have to accept that comes with a new reality for me.

I guess I am just at the point where this is all becoming uncomfortably real. I still shake my head thinking its a bad dream.... but then I look at the bruise on my wrist from the IV for the angiogram and realize it came from something that really happened...

Thankfully I talk to God every day and somehow find peace. Again, I am blessed to have the opportunity to have the surgery in the first place.

Now I just want to know when it will actually happen - still trying to learn patience at 51! So far I have not been successful at that..

I went for my angiogram yesterday and the good news is my coronary arteries are clear and healthy. The doctor performing the procedure saw that the aortic root and ascending aorta are dilated; I read this is quite common with my bicuspid aortic valve. The test made use of my femoral artery and as such I was told I had to stay home from work today as well. Yesterday the orders were to lie flat on my back and not bend my leg (Ok I tried - anyways all well, no bleeders) The surgeon's office called yesterday afternoon to have me come on for a consult today. has anyone had their aortic root and ascending aorta replaced along with the aortic valve?

The surgeon's name is Dr. Kevin Teoh - he worked out of McMaster in Hamilton for 20 years and joined Southlake Regional in Newmarket recently. Anyone living in Southern ON hear anything about Dr. Teoh? Everything I read on line is pretty positive.

Will post the outcome of the meeting later this afternoon

This past week was surreal - I was really in denial, even telling myself that they might have the wrong person (despite my own fatigue and angina, sheesh) Southlake Regional (Newmarket On) called me yesterday to schedule the angiogram procedure. I guess the surgeons want no surprises when they open me up sometime in the future. I go for the test Monday. They will discuss the results with me then. What seemed so unreal is beginning to take hold. When the cardiologist said "valve replacement" last Monday he lost me - I don't remember much of what he said after that. I even went to the gym like a fool on Thursday, having had a relatively "good" day and paying for it yesterday with fatigue and shakiness. Maybe its time I listened to my doctors. I guess I am pretty new to this cardiac patient status. I have to stop arguing with myself and just let the process be. I need to accept this as my new reality.

I take early morning walks and part of that is through small woodlot. God sent me this reminder to have faith - the heart is actually a leaf - all will be well

I saw the cardiologist yesterday and my aortic stenosis is classified as severe. He told me that the surgery will be done in the next few months, but that I need an angiogram first to make sure there are no coronary blockages. I am new to navigating the cardiac world of medicine - it looks like this test takes all day and I can't drive myself home, but will I be alright to go to work the next day? I know this sound like a basic question but like I said, I really have no idea what is going to happen now. It is all so new to me.

Hello everyone - I am new to the community, and have a question. I have a congenital bicuspid aortic valve; the last echo showed moderate aortic stenosis and the past year I have been feeling angina like symptoms when walking up hills; the gym cardio stuff is now a thing of the past. It was only in the past few years I really noticed that I have this issue, and in March I pushed my doctor for an echo. Anyways, I saw the cardiologist on August 24 and will see him again this coming Monday, Sept 28. Things seem better now that I have de-scheduled myself somewhat and took the hills out of my walks. I work full time.

So, I am not sure if the cardiologist will be recommending surgery anytime soon but it is weighing on me, especially as it concerns my job. How long did it take for people to get back to work? I have an administrative/accounting job, yes with deadlines and job related stress - normal stuff. It is a desk job, I am not lifting heavy boxes or anything.

What is your experience in getting back to work, if you even did? I am so new to this and would love to find out people's experiences living post-op

Thanks