New to the waiting room

[Jen]

Hi all,

I am new to the waiting room... I have a BAV that measures 1.1, and peak gradient of 56 and mean of 31. In November last year is was 1.3 and peak 48 mean 28, some minor changes... My "story" is.. I am 39, overweight (I know..) a triathlete - as of last year and have run a 1/2... I get short of breath because of my weight, but now it seems different.. I get "flutters/grabbing feeling" periodically, tired, periods of light headedness while jogging. I push thru thinking alot is my weight, on my last visit 2 months ago, my cardio tells me to try to lose some weight, and keep track of things, come back in 2 months, and if things are not better we will do a cath, with possible surgical consult. He said my valve is not "that bad", but in consideration of body size, yes it is.. He said no tri's this year. I have held back on my exercise to mild/moderate level so i don't really know if things are the same or different. I still get very out of breath at the top of stairs, etc...
I wish we could just replace it and move on so I can move on... Is that wrong?? and has anyone else been in this kind of boat?

Thanks !

 

[Superbob]

Hi Jen, welcome to the funny farm. I will say that the one symptom I noticed prior to my aortic valve and root replacement six years ago was being winded after walking up basement stairs. Seems if your cardio wants you back in two months, he is taking it pretty seriously. Let the docs know if you are having shortness of breath or other symptoms. You also have the option of getting a second opinion from another cardio.

 

[nngbwh]

Welcome aboard Jen hoping to see you around the board. Doesn't hurt to get a second opinion. Keep us posted.

 

[DeuxofUs]

Hi Jen!

Hi Jen!

Hi Jen!

Welcome. YES! I am in the same boat... I am 41 (female) and just found out I have BAV. I am at 1.0cm but my ejection and other numbers are pretty good. I have declined from 1.6 to 1.0 in ONE YEAR!

I am not overweight but I have stopped exercising. I wish I could just get the surgery and be done with it but I don't have symptoms (unless I am imagining it) which I do quite often.

It's a strange place to be when you are waiting around to "get worse"...

If you feel something isn't right, then you need to become your own advocate. Get a second opinion. It's your life, your heart.

PM me if you want a "valve" buddy

Hang in there. You are not alone.

 

[Jen]

Thank you all. I have a pretty good doctor at the Sanger Clinic in Charlotte, he is a marathon runner, and seems to be understanding of what has been "taken" from me in terms of my exercie capacity.. I am by no means in the front of the pack in any race I complete, I am more of a bringing up the rear person, but if I can inspire just 1 person to "tri" and move forward, then I have done what I was meant to do. But I want to do more! No one "hopes" for surgery, but right now I do, because I want to get back out there, I want to know what it is like to not be so out of breath at the top of the stairs, to not be so tired... to train with other people and not feel embarrassed because I get out of breath so easy and can't keep up.. I do need to advocate for myself, all along I have chalked things up to my being about 50lbs over, so I never complained... I will update after my April 6th appoint.
Till then!!

 

[Allisoninoz]

Hi. I had a Ross Procedure to replace my congenitally unicuspid aortic valve (we thought it was bicuspid til they got in there). I'd known I'd need the surgery since I was a teenager (am nearly 43) and it's a relief to have it done. I didn't have a lot of symptoms other than fatigue (what 40 plus woman who works and has kids isn't tired???) and had imposed limits on my own exercise because I just didn't feel like it. I'm not overweight. I think the decline from aortic valve problems mirrors ageing so much that it's extremely difficult to discern what's normal and what is not.
It is horrible waiting and I understand you're desire to get it done. Waiting is the worst part. Having said that, it is serious surgery so you don't want it before you need it. You just need to have confidence in your cardio (and yes, see another one if you would feel better) about making the right decision time-wise.
You may want to do some research on the Ross Procedure, which some surgeons recommend to those under about 55yo. It involves using your own pulmonary valve to replace your aortic valve and then using a donor pulmonary valve. It means you don't need to be on Warfarin due to a mechanical valve. Just a thought. Some people think it's a great option; others do not.
Good luck. Feel free to PM me.
Alli

 

[CATDOG]

Jen,
Can you still run now?!!
Last summer I tried a beginner's program...run for 1 min, walk for 2 min., repeat. It was an eye opener. I'd always thought I was still an active athletic person. I made the mistake of going all in one direction for 3 cycles, (really struggling at 30 sec. :eek2: and each time adding another min in between to recoop) and then I didn't think I could even walk back as far as the car. What is it about running...even a slow old-lady jog? I can still walk 3 miles on a treadmill if I've got an hour, but even jogging across the street reminds me of how much I can't do.
I do understand the get it done and move on train of thought, but then following Steve's posts and others I'm reminded that there are usually a few bumps along the way--so it's not quite so easy.

 

[Natina13]

Jen

Welcome to the "Waiting Room" !!!!! You have joined a great group of supportive people. This forum is filled with alot of knowledge ( plus knowledgeable people) to help make your journey less stressful. It gives me peace of mind, knowing others here,have gone where I need to go and have not only survived, but flourished.
I was hiking in Yosemite, without becoming winded... so I can understand your desire to be back to your norm, as I miss hiking in Yosemite greatly. I was at a normal weight then, but due to developing Hashimoto's Disease ( hypothyroidism) and the shock,of being told I had a congenital bicuspid valve, with severe stenoisis...plus need a triple bypass...... I have gained around 25-30 pounds waiting for my surgery date. I was very upset by this at first, but thankfully, I have a smart Doctor, who reminded me, worrying about the gain now, would not help.......just get my heart fixed, recovery, get the thyroid regulated.....then I will be able to hike again and the extra weight will come right off. I do understand your concerned about the symptoms your having ( I have even blacked out 2x in the last 2 weeks, so I am unable to drive at present, which sucks !)....I thought all of mine, were from my Thyroid problem, as I didn't know I had a heart problem..... but just know....as soon as this is all fixed, we will be back on our feet , symptom free and able to go forward with our lives, with a properly functioning heart ! YIPPEE !!!!!
Huge hugs and caring thoughts going your way....... keep smiling, life is good !
Renee

Go Team 2011 !!!

 

[Greg a]

Jen, a heart felt WELCOME to our OHS family glad you are getting the information that you are seeking and there is swealth of knowledge here for the future .....

-a list of acronyms and short forms http://www.valvereplacement.org/forums/showthread.php?27413-List-of-Acronyms-and-Glossary

-what to ask pre surgery http://www.valvereplacement.org/forums/showthread.php?26668-Pre-surgery-consultation-list-of-questions

-what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

-Preparing the house for post surgical patients http://www.valvereplacement.org/forums/showthread.php?19034-Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well

 

[Jen]

Thank you everyone!! You are all very welcoming with much knowledge! I have not tried to jog in the last month or so - I nearly blacked out the few times I went in Feb. Jog 30 -45 seconds minute, walk fro 3-4 (so frustrating because I was able to jog 2 minutes walk 1 just last summer) So I have been on my indoor bike riding 20-30 minutes everyday. I keep it level, aroun 18 mph @ a level 4 resistance.. I get bored and try to do some intervals by taking it up a couple levels and quickly get reminded of my capabilities so I take it back down to 4. I don't want to "give in", because I am just stubborn that way. I see the MD Wed. for follow up. Keep smiling everyone!!

 

[CATDOG]

Good Luck Wednesday. If you think you are symptomatic, then say so. Be as specific as you can.