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bluefields409

bluefields409

Well-known member
Joined
Jun 17, 2010
Messages
191
Location
Nova Scotia ( formerly ON)
I have just registered after discovering this site and must commend all those willing to share their own journey.

I am 46 years old and I was diagnosed with aortic stenosis (bicuspid) when I was 4, after testing including a cath @ sick kids in Toronto. On some level I've grown up knowing that OHS was likely at some point but I had anticipated it after a LONG life, say 90+ years. Symptoms were managable ( fatigue, breathless, palpitations, abnormal ekgs etc) Even in my younger days , I had elevated BP 140/90, which seems to contradict , on some level, AO but that escalated 4 years ago where ( without meds) 220/160 - 180/ 150 were typical readings for me, hence the admission to ICU @ hospital after chest pains etc.

It was determined that kidneys etc were fine and echo said my AO was "moderately severe" and there was valve damage/disease.

Regretfully, it seemed the internist and cadiologist assigned to me upon admission to hospital during a stellar week in ICU ( :p), were more concerned with being" right " than resolving my medical issues.After my discharge and several months of testing investigations and smorgasboard of meds, to the point I could not function due to side effects , I stopped seeing both doctors. I know, shame on me.

Since then. I must confess I have foolishly been imitating a ostrich, with head in the sand, for the last few years, after losing faith in the medical care I had been receiving. But I can say I now have a NEW cardiologist and we are starting from scratch regarding meds. Just had an echo and have to go to Toronto for MRI as my new Dr. is concerned about coarctation.

I was wondering if anyone else had BP issues (high) as part of their cardiac experience??

Right now my cardiologist says we HAVE to get BP under control and anemia and then surgey is next step. Being described as a "ticking time bomb" regarding stroke with BP was a bit of a jolt and I sure do not want to become a beneficiary of the heart and stroke association. So now I am being good, seeing doctor bi-weekly and taking meds. Was told what to look for should urgent trip to ER be in order. Current BP range is about 160/ 115 - 145/100 which is a great improvement but I feel a bit worse for wear. How ironic

Sorry for the length of my first post, although I cannot guarantee I won't be long winded again. At least I can type without losing my breath :D

I am thankful for tremendous amount of information here and am encouraged by the generous sharing of experience.

There is comfort in knowledge...oh..and chocolate. :eek:
To all ...be blessed and be safe.

:)
 
Hi Bluefields - It must have been difficult to have grown up with the knowledge you'd need to have surgery for your heart eventually. Mine came up within the last 3 yrs and I am 58. I had my bicuspid aortic valve replaced 18 months ago and after a loooong period of healing I feel 150%. I am sitting beside my husband who had an aortic valve replacement and single bypass two weeks ago today (YAY). He is recovering nicely, but the surgeon said he was a ticking timebomb too.
Both of us went to St. Michael's and had Dr. Daniel Bonneau for our surgeon. I didn't have major blood pressure issues beforehand, just major fatigue. My husband had shortness of breath -- that's all.
From the sounds of it, the Ostrich period is over, surgery is necessary and it will help you alot. Healing takes awhile but it is like a rebirth.

Keep in touch and get your faith back. Chocolate will always be necessary,
All the best,
Dale
 
Bluefilelds409,

Am pleased to welcome another fellow Canuk to the VR forum, warm welcome and am i correct in assuming that Toronto is your likely centre?

Do not apologize for long posts, write your heart out, this is a good forum for venting and you will likely, as i have find it very informative....the more you give the more you get back.

Am 56, had BAV and have had aortic valve replacement AVR and Mitral valve repair, a short 30 days ago

Good on you for taking charge and recognizing that it may be time and for working with a cardiologist, way better than an emergency entrance if you can avoid it, you would rather walk into hospital for OHS. than be wheeled in, again if you can.

I can understand that anemia may be an issue for op, but not sure with your current numbers as to why high BP would delay an operation if you need it?

For BP mine was running running very high in week pre op, 170/90, way above my norm, likely stress, but your numbers are not good as you know and you are still above what is considered as normal.

Since surgery 30 days ago, for 1st couple of weeks my BP was in the 85-100/60-70, has since bumped up since to 110/80, all still ok, but like many post op, have been on beta blocker Metropolol 2 x 25 mg daily since my operation.

Perchance is weight control an issue for you, or are you a smoker, as have to wonder what is the cause of high BP??

Have you had any tests done yet, echocardiogram. EKG, stress tests, if you are BAV, clacification/Stenosis of the valve is often associated with the symptoms in your first paragraph.

Welcome and ask away, maybe others have seen high BP numbers such as yours.

Gil
 
Hi there fellow Canuk and welcome to the VR family.
I can't help you in answering your question, just wanted to send you a special "Howdy"
 
Ok, I guess I'll be the first American to jump in. Welcome. Blue, you've got to get the BP down. There's just no way around it. Probably more than are few of us here have been ostriches, too, so don't feel too bad about that. So you'll need to take care of whatever it is that needs taking care of in order for you to live longer. That's what it boils down to. Yeah, some of it is scary, and some of it is stuff we don't want to deal with, but, oh well, if that's what it takes to stay alive, that's what ya do.
 
Long Life

Long Life

If you've made it into your 40's with a bad valve... you've done pretty well. I managed to ignore mine until my early 50's... could've made it a little longer if my aorta hadn't developed a 5.8 cm aneuryism.

As others have noted, the high blood pressure thing is a concern, but it's a concern for which there are lots of correction options. Mine always goes up whenever I visit my cardiologist so I still do some meds for it.

Your issues can be managed. Just be proactive and focus on positive outcomes.

-Philip
 
I had elevated BP 140/90, which seems to contradict , on some level, AO but that escalated 4 years ago where ( without meds) 220/160 - 180/ 150 were typical readings for me, hence the admission to ICU @ hospital after chest pains etc.
Click to expand...

Hi. Welcome here.

I'm not sure what you mean by high BP contradicts AO. You can have high blood pressure and BAV with severe stenoisis. The heart compensates for the stenosis to maintain flow and pressure, at least up to a point wher it starts to fail. I had high BP and still have it after AVR. It may be unrelated to the valve disease.

Wow! Those BPs of 220/160 or 180/150, although not unheard of, are rare without very serious problems. You are one lucky guy. Glad you've got it under better control and seem to have suffered no sustained ill effects.

What leads your cardiologist to say you need surgery now or soon?
 
Welcome to the forum from another BAV owner! Since you're BAV, do you know if you have any aortic dialation/aneurysm? The two (BAV and aortic dilation) often go hand in hand and are thought to be indicative of a CTD (connective tissue disorder.) Good luck with the BP issue.

Best wishes,

Jim

PS: pass the chocolate!
 
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Welcome! Do you have a home BP measurement device? (Sorry, I skimmed your message.) I have very changeable blood pressure and soon realized that I must I must try to calm down when the BP may be going up. But, even forced slow breathing or "meditation" may not lower mine when I am truly upset about something. And all of this is with my taking lots of BP meds. Also, eating food out anywhere, but particularly Chinese food, brings so much salt into my body that my (and your) BP will skyrocket. Please see if you can get that BP down. That will certainly be your undoing if you cannot get it down.
 
Hello bluefields, and welcome to The Waiting Room, the virtual room where many of us await our own turns at valve surgery. My case seems to have some similarities to yours. I'm a bit older (62) and have BAV. Mine wasn't diagnosed until a routine physical when I was in my early 50's, though. The similarity is that I, too, had high blood pressure. Not as high as yours, but it used to run around 150/100. My first cardio declined to aggressively treat the BP, so I fired him. The second (and his successor) have treated me with Avalide, which keeps my pressure down around 107/75 or lower. In addition to the usual concerns about high blood pressure, my second cardio explained that in a heart with aortic stenosis, the internal pressure is even higher than that which is measured at the arteries. Thus, for those of us with stenotic valves, the danger is greater than for the general population. This cardio I trust, the first was a quack.

The only real side effects that I have noticed after treatment for high blood pressure are that my exercise tolerance decreased slightly and that I am much more affected by extremes of temperature and humidity. I consider these effects a small price to pay for lowering the chances of damage to the heart.

Again, welcome. Stick around and ask all the questions you like. The folks here are a wealth of first-hand knowledge and are wonderful at sharing it.

P.S. Is the number 409 in your ID reminiscent of a particular 1960's Chevrolet engine? (I'm a recovering gearhead. . . )
 
Appreciate the responses

Appreciate the responses

Extends a big THANK YOU to all north and south of the border !! (also waves a union jack as I am a transplanted Brit to possible UK contingency. )....it really is wonderful to be able to talk to those "in the know".

My husband is great, chocolate is :) and your responses have already added to my resolve to get all sorted out.

A hint of my :confused: as My last cardiologist said no WAY was BP high due to BAV/stenosis , AS doesn't cause high BP whereas internist said oh YEAH BABY!! Give her enough pills to rattle and sharpen the scalpel . Although he didn't look like Austin Powers I think he got his mojo by prescribing countless pills. I even think one was for heartworms!!

Kidding aside, at last visit new cardiologist goal was no surgery until BP controlled, first concern risk of stroke. I must confess I wonder if possible to control BP by by meds if the cause is "structural". I suppose it is a measure of risk when all medical evaluations are completed.

As I await MRI, reading your kind responses and other threads are sure helping me to get some questions ready for next appt. Praying for a cancellation. Dr. wants it done at a cardio clinic but if not forthcoming soon, will "make do" locally. Confesses I don't like wearing turtle necks so y'all might guess how I feel about the MRI. :p

Has a question...has anyone else had a symptom(s) of a BIG heart beat from jaw/neck right down to waist and with every beat/pulsation it HURTS !! It can occur if simply crossing a room, not always with any real exertion although that can set it off too....only lasts about a minute but it is kinda like brainfreeze..GLAD when it is over. phew.

Must confess it was this symptom, and a flight of stairs, marilyn munro breathlessness and some mind numbing fatigue that encouraged me to toss the ostrich feathers.

To all, including those in recovery mode, whether it be days/months/years.. be safe and take care. :)
 
bluefields409 said:
A hint of my :confused: as My last cardiologist said no WAY was BP high due to BAV/stenosis , AS doesn't cause high BP whereas internist said oh YEAH BABY!! Give her enough pills to rattle and sharpen the scalpel . Although he didn't look like Austin Powers I think he got his mojo by prescribing countless pills. I even think one was for heartworms!! :)
Click to expand...

Blueshileds has a sense of humour, yeah, there is another one and a female to boot, welcome to the club, you'll do real well to look for the humour in and around this serious condition and with the reference to heartworms possibly another dog person, hear hear and loves chocolate too and of UK origins, just gets better...in a nutshell the perfect woman. Tell us more girl.

Seriously, hope you have finally found the right cardiac professionals, sounds like there is something going on, that needs fixing
Gil
 
BF, welcome to VR. Let me assure you that many of us, including myself, were members of the Ostrich flock. I kept telling myself that I was just out of shape and needed to workout more. As for the blood pressure issue, mine was also high. This is something that can almost always be managed but it does require that you work with your Doctor. Monitoring your own BP can be helpful but try to avoid being obsessive. Pick out a couple times a day and take your BP then record the results. If you don't record it is of no use.

You will learn as you read more that our hearts are quite incredible devices. Despite badly damaged valves, the heart will compensate to maintain blood pressure. In the long run, it is that very process of compensation that leads to permanent heart damage as the muscle itself becomes over developed. You then hear words like heart enlargement, thickening or hypertrophy. So it is important to both control blood pressure and when it is time to get the valve fixed. You may well be one of those people who gets past surgery to discover that you feel better than you ever have as an adult.

Larry
 
Raising my hand as another former ostrich, who has now been reformed, at least for now ;) Am from south of the border, but not by much (Minnesota). 6 weeks post surgery right now. Gil & I went through it about the same time - think I'm a couple weeks ahead of him. Not much to add right now (I know, everyone will be in shock, as I'm usually the one posting long-butt posts here - although Gil is now coming in a close second, lol). But as you have other questions, post away. And glad to see the humor too ;) I agree with Gil, it helps!
 
HI Blue...I am just over the Peace Bridge from Beautiful Ontario. I am just a week post-op and yet to catch up to Andy and the crew but I am ticking away. You will do fine also..ALL the great people here are a wonderful comfort and a great source of info and experience. Welcome to the Group!!!
 
Bluefields, WELCOME from Kitchener Ontario.......Darn with all of us here from the province maybe I had better get a few tents for the back yard and corner the Concordia Club http://www.concordiaclub.ca/o-fest.htm for Oktoberfest meeting http://www.oktoberfest.ca/aboutus_message.php As it is there is a movement to get Ellen Degeneres as a parade marshall
this year if you have not seen it here is a background clip......Bina just for you
 
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