Your Questions Wanted For The 2008 Heart Valve Surgery Patient Survey!

Hi everybody,

As many of you know, I originally launched this website to help future patients and caregivers better understand the realities – the ups and downs – of heart valve surgery.

Now, two years later… It’s amazing to see what is happening in this community – as we gather to share our thoughts, feelings and fears about heart valve repair and heart valve replacement surgery. Global friendships are being made. Plus, among all things, patients are helping patients and caregivers are helping caregivers. ๐Ÿ™‚

2008 Heart Valve Surgery Patient Survey

One of the most powerful tools we developed to learn more about the patient perspective was our 2007 Patient Heart Valve Surgery Survey. This unique survey of 78 patients, uncovered several interesting elements of the patient perspective that were not previously documented (at least in my research). For example, we learned a good deal about second opinions prior to heart surgery.

That said, we are now preparing to launch a new, revised patient survey for 2008. My hope is that this survey will be even more insightful as we survey hundreds of patients with more specific questions about their patient experience. But, I need to ask your help!

I have already developed a template of questions for this survey. However, I want to know what YOU want to learn about heart valve surgery in this questionnaire.

Is there anything on your mind about heart valve surgery? What is it? Is your question about the recovery? Or, is your question about your surgeon? Is it about the intensive care unit? Is it a true or false question? Is it a multiple choice question? Is it an essay question?

Please take a moment to think about it. If anything comes to mind, please ‘Leave A Reply’ in the space provided below.

In advance, thanks for you time and consideration to this request. Together, I think we can create a very powerful resource for future patients and caregivers. So you know, I will be launching the survey during the next 30 days. If you are interested in being a respondent, please email me at adam@heart-valve-surgery.com.

Keep on tickin!

Adam Pick
Written by Adam Pick

Adam Pick is a patient, author of The Patient's Guide To Heart Valve Surgery and the founder of HeartValveSurgery.com.

To learn how Adam has helped millions of people with heart valve disease, watch Adam's video, subscribe to his free newsletter, or visit his Facebook, or Twitter pages.

  • Jake

    Adam,

    First off. Thanks for everything. Your book, website, and blog has been a blessing for myself and my family.

    Second, I do have a question – albeit somewhat morbid – about getting ready for surgery. Do most people revise their wills? Create wills? Or, appoint an advance directive?

    I know I’ll be fine following my valve replacement. I’m just curious.

    Best,

    Jake

  • Kenneth Delkescamp

    Adam,

    4 weeks ago, I underwent aortic valve replacement (bovine) surgery. In addition to this, I had also developed a thoracic aortic anuerysm that needed repair. I would have most likely suffered a fatal heart attack without surgery. Your book was very informative and helped a great deal, however did not cover this topic (anuerysms) at all. My suggestion to you is to include some information about anuerysms (thoracic and abdominal). How else can I be of assistance? I would like to participate in your revised survey as well.

    Regards,

    Ken Delkescamp

  • Hey Jake and Ken,

    Thanks so much for the kind words about the book.

    Jake – I took down your question. Good one! I have some thoughts about that but it could be a great survey question as I receive that question frequently.

    Ken – So you know, I am preparing a revision to my book right now. Lots of new information to be included. I’m very excited about it. In the meantime, I have started posting lots of information about aortic aneurysms throughout my website and this blog. Here is an example:

    Aortic Root And Aortic Valve Replacement

    Keep on tickin!

    Adam

  • william gillin

    I had aortic valve replacement done in late september of 2007. My question to others concerns what you may have referred to in your book as a clicking sound in your chest. I think you said you had heard from someone that said the same thing. You seemed to think you had it before surgery. The feeling I have is what I would describe as the rubbing together of the sternum as I bend over. Has anyone who has had the surgery described this sensation. I never felt this before the surgery when I would bend over. Can anyone shed any light on this.

  • Lorie

    Hi Adam,

    I am 4 weeks out from aortic valve replacement and total resection of my ascending aorta due to an aortic aneurysm. This procedure involved “total circulatory arrest” a very scary terms that refers to the procedure when the body temperature is lowered to about 14 degrees centigrade. Very frightening in concept but an absolute hallmark of this procedure to ensure brain protection. I agree that more discussion of aneurysms need to be included in future texts. Also, I have experienced more post-operative complications than I ever imagined, including Dressler’s syndrome. I would be curious as to how many people experience this painful complication. Statistics say about 30% of people undergoing open heart surgery will experience it but I had never even heard of it before surgery. Also I have heard of this connective tissue disorder in relation to bicuspid aortic valves. What other ramifications are there to this connective tissue problem besides the aortic aneurysm (which I have already dealt with). Seems that having a bicuspid aortic valve can mean a lot more than just a valve replacement.
    Thanks Adam.

  • Jim

    I would be interested in the various complications experienced during the recovery period. There seems to be a few that are very common 20+% like A-Fib. Also, the precentage of people that go to formal cardiac rehab classses and the number of classes they go to. I went to 24 and thought they were very helpful.

    I cannot thank you enough for the information from your book that gave me a good idea what to expect. When I woke up and had that breathing tube in me, I would have been at maximum anxiety except I remembered from your book – breathing tube – no talk – no fun – need more suction!

  • To adam and Jake
    Any doctor would say to go home get your house in order. I am interested in aneurysms As i have enlarged left atrium that streches the left circumflex artery
    John T.

  • mercy

    To John T . Smith, I am the mother of John, who underwent Ross Procedure March 5, 2008. He too had an aneurysm 4 cm in size in the ascending aorta, the main artery that feeds the brain with blood (and oxygen). His surgery was a bit longer than usual, partly because two valves are replaced in the Ross Procedure, but also because of the aneurysm repair, and apart from a difficult 24 hours after surgery, he did very well.
    You see, an aneurysm is like a tire that bulges in a car.There is pressure and there is a weakening at that point (perhaps due to years of increased pressure in the area, due to a deffective valve or a poor pumping heart or and enlarged chamber in the heart, as you describe is your case). What needs to be avoided in a car tire, is the same thing that needs to be avoided in an artery: a blow out. You will know how caotic it would be if your car tire blows out, so the same for your “tire” in your heart. The point is not to “dwadle” when your doctors say “it needs to be repaired” if the patient can withstand the surgery (you do not give any other details of your case) and you have been told it is repairable. The main things to hang on to are: the skills of your surgeon and the entire surgical team as well as the ICU (recovery) team, your FAITH, your COURAGE, and your POSITIVE ATTITUDE. You’ve heard it before, but here it goes again: ATTITUDE IS MORE THAN 50% OF EVERYTHING! There, keep us posted, God bless you. Mercy, Mother of John. We are rooting for you , John.

  • To Mercy
    I e-mailed John this am sun 3-23.In 1948 i had rheumatic fever lay flat on my back for 6 months.Was told i had aleakie valve but you don’t tell a12 much. Had a checkup now and then over the years.In 1996 had pneumonia and found atril fibrillation had echocardiogram was put on coumadin.2000 dr retired . I said time to see a cardiologist. Had aecho Dr said see you a year no change said said see two years no change see you two years skipped it . Dec 2007 acute bronchitis very slow heart rate in the 40s.Echo in 2005 showed 55% mirtal valve 2007 showed 30%.Two echo later adviced that it is time to do it. Echo showed severe mirtal stenosis with tricuspid regurgition severe mirtal regurgition enlarged left atrail that stretches the cirumflex artery. I plan on being back in FL.in oct to play ball. Will get in rehab as soon as possible. I winter in winter haven FL. summer in Ithaca NY. So the story is do not miss a test
    Tks a lot John T.

  • krystle campbell

    my father just found out that he has a heart valve that is not working! he is only 52 and has just recently become disabled and not able to work. he had medicaid but they just dropped him because they said he was recieving too much money for his disability to recieve medicaid. he can not afford to have surgery. can u please tell me what can happen if he does not have this fixed!

  • Joseph

    hello Community,

    Has anyone developed AFIB after heart valve surgery? And if so, what was done about it? I am 2 years post AVR. I was doing GREAT, tennis everyday, gym, jogging. All of a sudden, I developed AFIB. Now I’m on Warefarin and my MD has recommended a cardioversion. Does anyone out there have any comment on this particular subject?

    Most grateful,

    Joseph

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