Dave, I sent you my contact info yesterday using that special email that you requested. Hopefully it got to you. If not, please contact me at lapidarian_2000@yahoo.com. ...Read more
Dave, I sent you my contact info yesterday using that special email that you requested. Hopefully it got to you. If not, please contact me at lapidarian_2000@yahoo.com. Also finding your other posts on the research you did prior to your procedure invaluable. In fact I'm meeting with my Cardiologist today and I'll ask about my ERO and Ace Inhibitors.
Ben from Minneapolis
Barry Van Gemert Dave's journal is a must-read for mitral valve patients. So glad I got to read it myself.
Suzanne Kosakowski posted a note for Dave that says:
Dave, back two years ago you were giving me advice about second opinions and finding a facility that had lots of experience with heart surgery. Don't know how ...Read more
Dave, back two years ago you were giving me advice about second opinions and finding a facility that had lots of experience with heart surgery. Don't know how often you check this site but I thought I'd let you know that I wound up going to the Cleveland Clinic for a second opinion on two leaky valves and they found a dilated ascending aorta. They feel I need to take care of it right away because of the rate it is dilating. Surgery is scheduled for May 15. Always appreciated the information you provided. Thank you! Hope all turns out well.
Dave Van Buren (DVB) Hi Suzanne! I dropped a note on your guestbook page. Smart to take care of it right away before it ... Read more
Dave Van Buren (DVB) Hi Suzanne! I dropped a note on your guestbook page. Smart to take care of it right away before it gets out of hand. I'll be checking your journal - best to you.
I checked out your links after your Christmas letter. Wow! I think you are doing a great service to the many who have valve problems. Thankfully, John and ...Read more
I checked out your links after your Christmas letter. Wow! I think you are doing a great service to the many who have valve problems. Thankfully, John and I don't- at least not yet. If we do, we'll now know where to look.
Someone pointed me to your guestbook, and although I'm only on page 4 (working backwards in chrono order), I'm really glad they did. I too any very analytical. ...Read more
Someone pointed me to your guestbook, and although I'm only on page 4 (working backwards in chrono order), I'm really glad they did. I too any very analytical. You asked for comments if we had used the Guidelines. I stumbled upon them on about by 36th hour of research (wish I'd found them sooner), and they became one of our textbooks. After reading them, I too began to have doubts that we were on the same page with our cardiologist. That is when we decided to write the initial emails that are currently referenced in our Journal.
Can't wait to get back and continue reading yours.
Hi again,
Thanks for responding so quickly and in such depth to my question. As usual, you thought of a few things that weren\'t on my list, so many thanks! ...Read more
Hi again,
Thanks for responding so quickly and in such depth to my question. As usual, you thought of a few things that weren\'t on my list, so many thanks! I hope to have good things to report after my appointment in a few weeks.
Take care and thanks again,
Hi Dave,
I have another question for you, and I hope it will not require you to do a lot of research this time:) I\'m coming up on my two year surgery anniversary, ...Read more
Hi Dave,
I have another question for you, and I hope it will not require you to do a lot of research this time:) I\'m coming up on my two year surgery anniversary, and I\'m headed back to CCF for a check up with my favorite cardiologist, Dr. Griffin. While I am feeling well and am expecting just a routine check up, I was wondering what sort of questions really smart patients (like you) ask their cardiologists when they go for their check ups. Are there important things I should be asking about my valves/repairs or about my echo? I have my list of questions, but since I am traveling a long way, I want to make the most of it. What do you ask when you go for check ups??? If you are willing to share, I would love to hear!
Hope your ESOS (and travel) was/is full of fun, family and adventure!
Thanks so much for all your great posts,
Dave Van Buren (DVB) Hi Deb. That's a great question and probably deserves more thought than just this quick note. But h ... Read more
Dave Van Buren (DVB) Hi Deb. That's a great question and probably deserves more thought than just this quick note. But here you go anyway!
In your routine checkups you'll generally get some combination of various exams & tests: stethoscope, EKG, ultrasound, treadmill, blood analysis. So the simplest kinds of questions revolve around the tests and what they are showing. I ask to listen to my heartbeat with the stethoscope and ask "what am I hearing?" When they do the EKG, what am I seeing on the traces? With the echo: show me my annuloplasty ring and the leaflets coming together. Show me the (lack of) backflow when the valve closes. These kinds of questions lead to others and exploring them gives you a good picture of how your heart is working.
Questions about your repair: how is it holding up? Is there anything to be on the watch for? Just in general, how durable are repairs? Most last by the way.
There are questions about good health practices: What can I do to keep my blood pressure low? What can I do to keep my arteries clean? What can I do to reduce my chances of other bad things happening to my heart, for example from diabetes?
If you are on medications you can ask about what they do, how they work, how they interact with other medications. If there are safer or less costly alternatives. Are there other medicines that do the same thing with different/fewer side effects? What are the studies showing their effectiveness and where do you stand with respect to the corresponding study groups. Some drugs require discipline and monitoring so discuss what discipline is needed and how to monitor, especially when away from home base. And what safety nets are appropriate.
Then there are the questions about your potential. How vigorously can I exercise? Is it reasonable for me to do X? Do I have any medical limitations?
Successful mitral valve repairs fully restore patient life spans. Of course the surgery is key, but contributing is that patients learn a lot about heart health and are motivated to apply what they learn. So asking questions during checkups is important.
And congrats to you on your upcoming 2 year anniversary. You seem to have your head fully wrapped around it and are doing a great job helping the "newcomers" in their journeys. Bravo!
Brian Walsh - 6 months post MV Repair and enjoying ESORunning :) posted a note for Dave that says:
Great read as always, your information is great but nice to see how well you are doing 2+ years after surgery. Awesome to hear and keep enjoying the summer, ...Read more
Great read as always, your information is great but nice to see how well you are doing 2+ years after surgery. Awesome to hear and keep enjoying the summer, winters are for blogging.
Hi Dave,
Wow, thanks for the the extensive research in answering my question! I didn\'t mean for it to be a full blown project for you......I was mostly just ...Read more
Hi Dave,
Wow, thanks for the the extensive research in answering my question! I didn\'t mean for it to be a full blown project for you......I was mostly just curious how the data is collected.
Your posts are always a wealth of information and extremely useful to anyone who takes the time to read them. Keep \'me coming!
Thanks again,
Deb Z
Dave Van Buren (DVB) And thank you for the great question and opportunity to learn. Keep the beat -- DVB
Hi Dave,
I have a question, and I\'m hoping you can answer it. Where do \"researchers\" get their info about morbidity and complications following heart ...Read more
Hi Dave,
I have a question, and I\'m hoping you can answer it. Where do \"researchers\" get their info about morbidity and complications following heart valve surgery. I had my surgery 17 months ago, and no one has ever contacted me about how I am doing or if I\'ve had any problems. It\'s not that I expected anyone to do so, but it got me thinking about where the statistics we read about come from. Do you have to be part of a study, or do they have a way to track you through med ical records? Just curious.
Deb Ziegler
Dave Van Buren (DVB) Hi Deb. Great question. Inspired me to do a full-fledged blog post on the topic so check on my main ... Read more
Dave Van Buren (DVB) Hi Deb. Great question. Inspired me to do a full-fledged blog post on the topic so check on my main journal page. I would hope your cardiologist keeps in touch with your surgical team regarding your progress. Mine does. But my surgeon doesn't check up on me personally so I send him a short note every six months to a year. Congrats on 17 months, you rock -- DVB
Your journal was so helpful! Your enthusiasm is contagious. I have read Adam\'s book and the \"Guidelines\". What great documents. I think I am driving ...Read more
Your journal was so helpful! Your enthusiasm is contagious. I have read Adam\'s book and the \"Guidelines\". What great documents. I think I am driving my cardiologist a little nuts with my questions, but these documents have helped me to understand my situation so much better. I am just starting my journey and plan to have surgery in May. Thank you for helping me in my journey. Although I am just learning about valve disease, I have experience with the depression aspect of this. 10 years ago I had a heart attack at a very young age with really zero high risk factors to cause it. My cardiologist just said \"sh-- happens\". The entire mortality thing made me so depressed. As you have stated in your journal, the most important thing I could do to get over depression was to exercise. I always loved to be active and I thought how fortunate I was to have something that would help me get better by doing something I loved to do. I also found \"mind over matter\" to be helpful. As soon as I noticed I was feeling sorry for myself, I gave myself a kick in the butt and changed the attitude. There are many folks out there that are so much less fortunate and so I counted my blessings instead. Thank you again!
Dave Van Buren (DVB) Thanks for your kind words. It makes my day to know these blog posts are helpful.
What up my man?!?! I have been out of HVJ for awhile, just checking back in and wanted to say hi. So great of you to still be posting and helping everyone ...Read more
What up my man?!?! I have been out of HVJ for awhile, just checking back in and wanted to say hi. So great of you to still be posting and helping everyone the way you do. Your are awesome! All good with me. Onto training for my next half in March. All the best for 2013!
-Mitch Friedman
Dave Van Buren (DVB) Half marathons! Dude, you are busy proving it just gets better and better after getting wonky valves ... Read more
Dave Van Buren (DVB) Half marathons! Dude, you are busy proving it just gets better and better after getting wonky valves fixed.
I'm doing pretty good. Finished teaching an evening class last quarter (do it every few years) so back to playing lots of ultimate frisbee. League started last week and its looking like a good season.
Great to hear from you, be monstrous in 2013! -- DVB
Dave,
Thanks for the kind words about this project and the congratulations on the 7-year anniversary.
I wanted to thank you for all of your great support ...Read more
Dave,
Thanks for the kind words about this project and the congratulations on the 7-year anniversary.
I wanted to thank you for all of your great support of this community. Your personal posts and guestbook comments have helped many, many, many, many, many patients all over the world.
All the best!
Adam Pick
Dave,
Thank you for all your hard work in putting this research together. It is comforting to know that something can be done with MVP and valve repair. ...Read more
Dave,
Thank you for all your hard work in putting this research together. It is comforting to know that something can be done with MVP and valve repair. Also, thanks for the information on ERO. I will make sure to ask my MD about that. I was diagnosed with MVP with regurgitation about a year and a half ago. My MD told me I was born with defective valves...wow! However, my regurgitation is now severe and my heart is also enlarged. I don\'t have symptoms of afib or heart failure but I sure do feel tired all the time. I also get dizzy or lightheaded at times. So, my MD is recommending surgery right away as in the end of the month. My options are repair but if not possible they will do a mechanical valve since tissue valves wear out sooner in younger patients. I am 43 years young. Any thoughts on that? Should I consider pushing for a tissue valve if repair is not possible? Should I be asking anything else? Steve Bond
Dave Van Buren (DVB) Hi Steve. I posted my reply in your guestbook so you can have all your stuff in one place. Best to ... Read more
Dave Van Buren (DVB) Hi Steve. I posted my reply in your guestbook so you can have all your stuff in one place. Best to you -- DVB
Thanks Dave, Great post. I will have to ask what my ERO was/is. As always you are a great source of information and it\'s much appreciated.
Janis Kielbasa ...Read more
Thanks Dave, Great post. I will have to ask what my ERO was/is. As always you are a great source of information and it\'s much appreciated.
Janis Kielbasa
Dave Van Buren (DVB) Hi Janis. Thanks for the note. I will always remember your laundry remark. It belongs in the "best ... Read more
Dave Van Buren (DVB) Hi Janis. Thanks for the note. I will always remember your laundry remark. It belongs in the "best of" collection. All the best to you and yours -- DVB
Thanks Dave....Great statistics. I\'ll have to look back to see what my ERO was.
I love being able to say \"if I didn\'t have this surgery, I\'d have an 80% ...Read more
Thanks Dave....Great statistics. I\'ll have to look back to see what my ERO was.
I love being able to say \"if I didn\'t have this surgery, I\'d have an 80% chance of being dead w/in 5 years\". It\'s so definitive and makes the decision for surgery so worthwhile. I guess, even after having OHS that I still don\'t believe I had anything wrong with my heart. Things like that only seem to happen to other people, not me.
good info.....keep the Mitral valve stats coming....I love that stuff. :)
Nancy B
Dave Van Buren (DVB) Thanks Nancy. Yeah, things only happen to other people. Ain't that the truth. Until it happens to ... Read more
Dave Van Buren (DVB) Thanks Nancy. Yeah, things only happen to other people. Ain't that the truth. Until it happens to you. The thing is there's lots of stuff that happens to other people because there are so many of them. But remember too that we are the other people's other people! Happy New Year to you and may your beat be strong! -- DVB
Hi Dave,
Good post on how diet can directly affect your blood glucose levels and insulin response. I\'m over 100 mg/dl for a 12-hour fast test, so I\'m prediabetic. ...Read more
Hi Dave,
Good post on how diet can directly affect your blood glucose levels and insulin response. I\'m over 100 mg/dl for a 12-hour fast test, so I\'m prediabetic. According to the American Diebetes Association, \"Recent research has shown that some long-term damage to the body, especially the heart and circulatory system, may already be occurring during prediabetes. The good news is there are things you can do to prevent or delay the development of type 2 diabetes.\"
Prediabetes affects the heart!!!! So I stopped eating my late night carb feast (I get off work at 10 pm and snacking before bed is a habit). After the holidays, I plan to eliminate a lot of the processed carbs.
Hope all is well with you.
Keep on ticking!!!
Lee Castro
Dave Van Buren (DVB) Thanks Lee. Your info about diabetes and the heart is key. They already tinkered around in my heart ... Read more
Dave Van Buren (DVB) Thanks Lee. Your info about diabetes and the heart is key. They already tinkered around in my heart once and I'm not so keen on it happening again! Good luck with your plan. Happily there are still lots of yummy things to eat. -- DVB
Hey Dave,
Wow....you have a lot of willpower. I tried cutting out all sugar, but I only made it a couple weeks. It was extremely difficult! Aside from the ...Read more
Hey Dave,
Wow....you have a lot of willpower. I tried cutting out all sugar, but I only made it a couple weeks. It was extremely difficult! Aside from the incredible cravings I had, I felt a lot better without the sugar, so you would think that would make it easy to remove it from my diet. NOT!! After watching the \"60 Minutes\" on the evils of sugar, we would all be better off giving it up. Let me know if you are able to stay off of it. I have tried many times and can\'t seem to give it up even though I know it isn\'t good for me.
Keep on posting.....love reading your posts!
Deb Z
PS. Have read the book \"Wheat Belly\"? It\'s a different look at blood sugar and heart disease.
Dave Van Buren (DVB) Hi Deb. Yeah, it takes thought more than anything else. And a decision each time faced with somethi ... Read more
Dave Van Buren (DVB) Hi Deb. Yeah, it takes thought more than anything else. And a decision each time faced with something sweet. Cutting out all sugar sounds hard - I just cut out the "added sugar". And now I relaxed that some, maybe by a third back to my prior levels since it had such an effect. No need for torture! -- DVB
Hey Dave..
As always, I enjoyed your post on the blood sugar.
My husband recently was diagnosed with \"high, normal\" levels. I would like him to try your ...Read more
Hey Dave..
As always, I enjoyed your post on the blood sugar.
My husband recently was diagnosed with \"high, normal\" levels. I would like him to try your experiment, however, that may be my biggest challenge this year! LOL... He too, has a huge sweet tooth....soooo...let the games begin!
We are all truly blessed to have you on this site! Keep up the good posts...so many benefit from your research & posts.
Take Care..
Connie T
Dave Van Buren (DVB) Hi Connie. Hope all goes well with your honey. What we eat is as much a habit as anything else. Ha ... Read more
Dave Van Buren (DVB) Hi Connie. Hope all goes well with your honey. What we eat is as much a habit as anything else. Hard to change... until it's a new habit. A lot of what we eat is social, so I'm sure you will be a huge help to him if he wants to give it a go. All the best to you guys -- DVB
Hi DVB,
First of all, I want to thank you for writing such useful posts....they truly are helpful to anyone dealing with valve surgery. I\'ve referred quite ...Read more
Hi DVB,
First of all, I want to thank you for writing such useful posts....they truly are helpful to anyone dealing with valve surgery. I\'ve referred quite a few people to your journal for info too, so keep up the great posts!
I just read your latest entry about ace inhibitors, and I was wondering if beta blockers do the same thing, or are they a whole different type of drug? My cardiologist wanted me to take a beta blocker before my surgery because he said it might make me feel better. I declined because I didn\'t feel that bad, but I never thought to ask if there was another reason to take it. I did ask if there was something I should or shouldn\'t do before surgery to improve my outcome, but I was just told not to lift anything heavy.
I am now on a beta blocker for my palpitations, and while they don\'t make the palpitations go away, the beta blocker does seem to make it so that I don\'t feel them so much. Not sure how that works, but I am grateful for the reprieve.
Thanks again for the great posts!
Deb Z
Beta blockers also are used to reduce hypertension aka high blood pressure. They weren't part of the report, but it's a plausible thought that they would have similar effect because they reduce the work load on the heart. Beta blockers are also used by millions, so their side effects and risks are relatively well known.
By the way, heavy lifting raises your blood pressure significantly and puts a higher load on your heart. It's kind of like an anti-drug because you really want to lower the load.
These drugs all operate on different parts of the blood pressure regulatory system. Beta-blockers bind to receptors in the cell membranes of your arteries and smooth muscle, preventing the entry of adrenaline.
If adrenaline were to enter those cells it would cause them to contract, which in turn would increase blood pressure.
Beta blockers are also used post heart surgery to limit heart rate and blood pressure, and I guess from your note, palpitations too. I had a six week prescription of metropolol (which targets cardiac muscle beta receptors) after my surgery. In other settings beta blockers are used to reduce anxiety, and to lessen the severity and frequency of chronic headaches among other things.
And thanks Deb for the encouragement. I can't articulate well enough what it means to me when I hear that my posts have been useful. And I have to give thanks to everyone who posts here, giving information, spreading encouragement, being examples to the rest of us and even asking for help. This is a magical place and thank you for being a part of it.
Hi DVB,
I appreciate your posts. I am just coming up on 6 moths since Mitral Valve Repair (open heart). The cardiac rehab really was the best gift I could ...Read more
Hi DVB,
I appreciate your posts. I am just coming up on 6 moths since Mitral Valve Repair (open heart). The cardiac rehab really was the best gift I could give myself after surgery. I feel better now that I have for many years, and I was pretty active prior to surgery. Please keep up with the encouraging posts, they are very helpful
Wes Phillips
MVR 5/9/12
Thanks for the kind words. They picked me up on a blah day.
I'm a big believer in rehab. It gives structure and discipline to the post-surgery physical conditioning necessary for rapid recovery. Also gives confidence to push your body some that most folks wouldn't have without the monitoring.
5K trail run? Monstrous! I love trail running. I'm not so big on races but I do one at work each year because it is on a trail. Trail running though... It's such a free feeling running through the wild with nothing but your shirt, shorts, and shoes. Kinda primal. Keep it up my man.
Hi DVB,
Great post on depression and exercise. The run/walks I do give me structure to my day. On alternate days I go to the gym and use the treadmill or ...Read more
Hi DVB,
Great post on depression and exercise. The run/walks I do give me structure to my day. On alternate days I go to the gym and use the treadmill or stationary bike. During the activity my mood lightens and the endorphins kick in - I almost feel normal.
My Kaiser HMO only offers cardiac rehab to the sickest of the sick, so I\'ve had to do this on my own. However, the sheer satisfaction of taking control of this aspect of my recovery overshadows the negative feelings I had when I wasn\'t offered cardiac rehab.
Keep up the insightful posts DVD!!!
Regards,
Lee Castro (Surgery 8/13/12)
I think you hit the nail on the head with "the sheer satisfaction of taking control". Taking control directly confronts the negative feelings we can have. Then we are doing things instead of things are being done to us. Much better for our heads.
Your rehab routine is an inspiration. Monstrous! -- DVB
Dave Van Buren (DVB) So here's how I read the chart in my case. I was diagnosed with severe mitral regurgitation followi ... Read more
Dave Van Buren (DVB) So here's how I read the chart in my case. I was diagnosed with severe mitral regurgitation following a bad heart murmur and an echocardiogram, so I entered the chart at the top. Since I did not have any symptoms, I went to the left, where it says "No" and dropped down to the circle "LV Function". That's left ventrical function. My "EF" (Ejection Fraction) was 0.6 (60%, normal) and my "ESD" (End Diastolic Dimension) was less than 40 mm (heart not significantly enlarged), so I dropped down again to the left. Then, since I did not have atrial fibrillation or pulmunory hypertension I continued to drop down to the "mitral valve repair likely" circle. The answer was yes (90% or better of the time it is repairable for non-rheumatic valve disease). That resulted in a recommendation to undergo surgery for repair. So I scheduled it at the earliest time possible to avoid further deterioration of my heart.
If the chart is obscured by stuff from the web site, you can click on it and drag it to your desktop where it will just be an image file on your computer.