Karin's Heart Valve Journal

Hello. Has anyone had any experience with Kaiser? Specifically I am wondering if anyone has had valve replacement there, was the experience positive, and did/do you have a good relationship with your cardiologist? Thank you so much.

It's been a long time since I've checked-in on my journal. I apologize to anyone who left me a message with no response. I have been trying to move on with life and not think about this impending surgery. I continued to take care of my family, I fulfilled a dream and published a fiction novel, and have recently gone back to work part-time after almost 14 years at home with my kids. My valve (AVA) still measures around 1.1 in my echoes with some chest pain and shortness of breath, but I am ignoring most symptoms until something obvious rears it's ugly head. I'll be 46 in July, two years after I was 8 days away from surgery, and my cardiologist tells me I won't make it out of my 40's with this valve. I wonder though. Love all your posts and thank you for sharing. When It's my turn I will be well prepared, and will return the favor. Take care everyone.

Had my cath yesterday and the numbers came back with 1.4 measurement. Strange because all 4 echoes show .9 or 1.0. After preparing for months to have surgery on July 22 we are now postponing and monitoring until another echo in October. I'm a little happy but mostly bummed as I was so ready to be done and on the road to feeling better. Strange there was such a discrepancy. Anyone ever see that before?

It's been a great year of reading all of your stories and following your journeys. I see such love and support from all of you for each other. I hope you know how amazing you all are.

I was originally told I will need heart valve surgery in 8-10 years (two years ago). That has now changed and I have been told that it's time to schedule my aortic valve replacement. The good news is that as long as my symptoms do not worsen I was given a window to decide when it would be a good time for my family to have it done. I have chosen July and my first "staging" appointment is July 6th. I am not sure exactly what will happen between July 6th and my actual surgery, but I was told I don't need to do anything except research and make choices about which valve I want and location/surgeons in my area.

It's all pretty scary but reading what all of you have to say has been a great help. I will be 44 years old in July and am married with two boys age 8 and 13. I know I want to be around for a long time to see them grow and start their own families, so I want to choose the valve and procedure that has the best long-term prognosis for me. Right now I am leaning toward the St. Jude mechanical valve as I would like to become active again post surgery and it seems like the best option. However, I am scared of the blood thinner and it's implications. I see the procedure Adam had and wonder if that is an option for me too.

In June we have a trip to Hawaii planned that I would like to take before surgery. I read Adam's book and his pre-surgery trip makes me question that decision, but I do feel God's will is at work in my life and I will know by then if I should go.

So much to think about. Take care everyone and I hope to share by surgical journey (and anything else worthwhile) to those who can benefit.

Karin

I have been reading all of your amazing stories, and learning so much from all of you. I see that a lot of you are very active and play various sports, run, bike, and much more. I try to read closely to see what your exact diagnoses's are and how you are able to keep exercising strenuously right up until it is time for surgery. I see so many positive attitudes and how many of you will not give in to these heart diseases, keeping at your active lives and staying in shape. I want to be that way too, but I am struggling with some things.

I am wondering how some of you are still able to exercise strenuously with these various heart valve problems? When I was diagnosed last spring I was told that even though my bicuspid aortic valve was considered moderate or moderately severe (.9), that I should stop exercising strenuously due to risk of congestive heart failure or other damage to my heart. I was told I really should not be running at all. Since my main form of exercise was playing competitive soccer, softball, roller blading, and these kinds of activities my understanding has been that I need to change. That has been difficult as I find myself getting bored with or put off walking, and then consequently don't exercise at all. I have gone from frequent strenuous exercise to almost nothing (coaching soccer and a few walks a week). I can feel my body getting weaker and I feel less healthy.

My question is this. Has anyone else been told not to exercise strenuously even though surgery could be a long ways away? Do any of you just do it anyway, watching for symptoms and being careful? Have any of you found ways to exercise and stay healthy while not lifting weights and running? I know there is yoga and other great activities that are not strenuous, but I admit I am struggling to form an attachment to any that motivate me to get out there and do it. Not exercising enough is really starting to effect my strength, motivation, and energy level, but I want to follow my doctors orders so I am here for my family in the long run.

I would love any feedback you might have on this subject. I want to be a positive, healthy fighter of this disease like all of you.

Thanks so much, Karin

I am excited that I found this blog. Reading through your stories has already helped me see what kinds of things I may be facing in the future, and has given me a feeling of community. After going in for a routine physical my primary care physician suggested I have my heart murmur checked by a cardiologist After a visit and tests over a two month period I found out that I have a bicuspid valve that has caused aortic stenosis and calcification. There has been some discrepancy whether or not a .9 aortic valve area measurement is moderate or severe, so I am not sure how close I might be to surgery. My cardiologist says it could be 10 years, or 1 year. Time will tell.

I have played soccer competitively for many years and have been told I have to give it up due to risks and the possibility of damaging my heart. It has been a hard lifestyle change. I wonder if any of you at this stage of diagnosis had a hard time figuring out whether something is actually a symptom, or just anxiety or imagination? My cardiologist says that because my stenosis is moderate, the few things I do feel are probably not caused by my heart valve. I'm just not sure, because others have said my measurement is moderately severe.

I am now 42 years old. I am married and have 3 boys. Right now I think we are all in a state of denial and uncertainty. We just go along like nothing has changed, but all of this does roll around in my head quite a bit. Thanks for listening and I am looking forward to reading your amazing stories as I go through this myself. Take good care.

Karin