Diagnosed with Aortic Root Aneurysm

I'm just trying to live as close to normal as I can right now. I am waiting for a date for surgery. June 30 I had a pre-admit and CAT scan done, and expected to be in surgery within a month. Unfortunately, the operating rooms in Ontario cut back their hours in the summer, and our doctors only have so many hours available in the hosptials for surgery. Add to that vacations, and here I am waiting. The surgeon's office told me that unfortunately there are patients that had their pre-admit done 2 months before mine, and they are still waiting for a date, too. I am looking at at least September or October before I have surgery.

You will be fine. It's not going to do anything once you get on BP meds. Just a question ? Do you have another hospital option ?

Thanks Joseph. My blood pressure meds have been increased. I now take 2 kinds, one which was prescribed due to my racing heart before we knew what my problem was. Cardiologist said to continue with them.

There are several hospitals in the area, but they don't specialize in cardio vascular surgery. The surgeon I have is well skilled in the type of surgery I need to have done. The problem is getting Operating Room time. The waiting time is terrible. The hospital I will be in has the lowest wait time in my province.

Thank you for your confidence.

I hear a lot about free healthcare and how long the waits are in other countries. No worries you will be ok.

My Valve was healthy bicuspid but they didn't remove it.. my anyersm was above the root .. I asked about this and they said they would NEVER replace a good valve bicuspid or not ... so am I right to say they are relplacing yours because it's in the root ??

Totally understand James. I wanted to walk into the hospital and have my surgery immediately! I found out in March. It's already July and I didn't think I could make it this long!

I understand I may not have surgery until at least September. It's out of my hands, so I have to put my faith in God. He has a plan.

I don't lift anything over about 10 lbs., I try not to be stressed (yeah, I know), and live as close to normal as possible. I too, cut caffine. I don't get much exercise because I get breathless, and was advised that if I am breathless it may be too much. I have had my doctor adjust my blood pressure meds - I take more now than I ever thought I would. I don't want my heart racing like it did when I first thought something was "off".

I have been able to calm myself down a bit. I take my cell phone to bed with me (my husband works nights), and my iPad to keep me distracted until I fall asleep. That helps when I'm at home alone.

Babysit yourself for a few days. It was several weeks before I told anyone other than my husband and kids what was going on with my health. Now I am better at discussing it with others, but I really needed to process it internally at first.

I'm with you. Everyone here will be hoping you have a good outcome and that you won't wait too long before the doctors can correct your aneurysm and valve. Is your aneurysm an aortic root aneurysm? I will have my bicuspid valve and my aorta replaced.

James,

I added Hibiscus tea to my diet, I cold brew and drink a couple of glasses a day. For me, it has cut the Hypertension and is proven to to help others.  

I dissected before I knew anything was wrong, I was so wound up and tensed out before it all happened that maybe I wouldn't have survived the Hyper Tension if I knew in advance.

I'm just lucky I had a great surgeon team to take care of me, I'm just happy to be alive right now. I'm still in shock over the whole thing, knowing nothing about Aortic Valve Disease until after it happened.

I keep reminding myself, I'm A Survivor Now!

I am in a weird place, and just don't know yet about my valve. I am bicuspid as well, and the valve is in decent shape, however. I do have a root aneurysm which is 5 cm, that is their main concern. It is caused by the bicuspid valve, but I am largely without symptoms, which makes taking it easy hard. I feel like I am fine, aside from the beta blockers. They have taken my blood pressure so low it makes climbing stairs noticabley harder. I will likely need my valve and aorta replaced.

Quick question, are you going animal valve or mechanical?

That's such a difficult decision, isn't it?

I originally thought I would do the animal valve and if it needed to be replaced, then I could go with a mechanical valve at that point. I said this to the doctor and he told me once you go with one tyoe of valve, you can't replace it with the other type. So I rely had to think that over. Do I really want to have continued surgeries in my 70's and 80's? No, not really. But, if I am strong enough to live with this aneurysm this long, and strong enough to have a successful surgery, than I am here fo ressons beyond my knowledge,and I might just as well enjoy my time here. So, I am sticking with my gut feeling and will have an animal valve. A pig valve is what I prefer because I have found out that the cow valve is actually man made, to resemble a cow's valve.

I am in some other groups where members have actually said they are having another valve replacement and are going with the other type of valve. Not sure why my doctor says you can't do it,so it will be interesting to follow those journeys.

On a side note James, I didn't realize I was having any symptoms until my heart started racing. Looking back, there have been indications for years. I thought I was just getting old, fat, and lazy. I started putting weight back on that I had worked hard to get off, I stopped walking regularly, I started retaining more fluid, I got short of breath going up more than a flight of stairs, I didn't feel well bending over to get pots and pans out of the cupboard, and I was so, so tired all the time. I also find my legs just don't seem to have the strength to make it all the way up the stairs sometimes. I sweat during the day for no reason, and at night too. I thought it was menopause coming back at me...now I truly believe it is one of the indicators, too.

Everyone is different. My age and my lifestyle would affect any symptoms I might experience. If you think about it, you'll probably realize "something just doesn't seem right". Deb

You actually got me thinking a bit about symptoms, and it seems some things I might have writted off to being older might be associate with this too. I can not stay awake on the couch, my legs occasionally feel heavy after walking up stairs, even though I am not breathless. And there have been times where I could pace myself doing cardio and do so well, but other times where I just got winded and couldn't get it together.  My valve is bicuspid, with only minor calcification, with no leaking or stenosis, or regurgitation, so that's good anyway, but I suspect it will have to be replaced, if for no other reason than my age. If I were 26 they might try to save it, but at 46 I suspect otherwise. I will see.

I am not nearly as scared or nervous as I was immediately after the diagnosis, but I am just starting down this road, and have a lot to learn still, and a long haul ahead. Glad I have folks like you along for the ride, feels a lot less alone.

I did find out approximately 1% of the population goes through this, which is about 3.6 million Americans. When I realize that there is that large a population, it means there will be more advances to come. It is something people are going to develop new ways of treating, so who knows, maybe our old age re-surgeries to replace our animal valves will come from something grown from our own stem cells. ;-)

Yes, I think we don't recognize the symptoms because we think we ate ageing, or even just because we have (thankfully) been generally healthy.

It's always been the opposite for me, I never get sleep. Even in the hospital they said I would stay awake all night (don' remember most of that). My eating & sleeping habits are horrible, not much sleep, eat once a day, Although, I'm eating healthier now after the operation, but still once a day.

Oddly, I am getting the best sleep I have in years in the last week since my daignosis. 

I have a surgical consult and chest ct scan on Aug 1.

I have my good days bad days, more good tho. I tend to over do things when I'm feeling good and wear myself down. In september I will test to see how high risk I am to dissect again, I hope every thing looks normal.  Since I dissected and had no prior notifications, I have no Idea if my valve ballooned.  The surgeons say my valve basically ripped itself away from my heart.