Carol's Guestbook

Hi Carol! You will find a great deal of comfort from this journal site! I did! I\'m a 40 year old middle school band director. This past summer, I had my mitral and aortic valves replaced. I had a lot of the same concerns! -Can I go back to school feeling 100%?!? I\'m so glad that I had it done during the summer. I was practically ready in mid August. It probably took until September, when I felt myself...but better again! I have more energy than I can remember! I would STRONGLY suggest a 2nd, 3rd opinion! And, visit this site often! Christy Naughton from Atlanta

Hi Carol. I had mitral valve repair last April. While heart surgery is pretty safe, it is not 100%. So I made a big study of reducing the residual risk, which is a few percent. There are several risks to manage. First there\'s the risk of doing nothing. As symptoms advance the risks mount. So there\'s a penalty for waiting too long. The numbers are something like 50% of symptomatic (angina, fainting, shortness of breath) aortic stenosis patients survive 5 years without surgery. Second, the surgery itself. Undergoing surgery too early exposes you to unnecessary risks. So the timing is important: not too early and not too late. Gene posted below the link and an excerpt from the guidelines that I posted to his guestbook. Print out the pdf from the link and take it with you on your visits to cardiologists and surgeons so you can have concrete discussions based on best practices and your specifics. The guidelines do recommend surgery for patients that have become symptomatic. When you are undergoing surgery you can improve your already excellent odds for successful outcome by having it done at a high-volume center of excellence. You can improve your odds of having intact cognitive function by having open heart instead of minimally invasive surgery. You can improve your survival odds by being in good physical condition. You can improve your survival odds by not being underweight. You can improve your odds against infection by careful attention to cleanliness just before you check in for surgery (whole body scrub, clean fingernails, brush & floss teeth, fresh clean clothes & shoes). You may improve your odds by being well rested and at peace with the surgery so you are not short on sleep. You will likely improve your odds by being well informed so you can make the best decisions possible. Third, there is the recovery. Reading these journals you will find that being your own best advocate is important. If something doesn\'t seem right, speak up. Have a support group that will visit you in the hospital and be with you at home. You can jump start the recovery by moving your body as much as you feel able. There are 2 good reasons to jump start: there\'s less time for bad things to happen, and you\'ll be recovered sooner. As soon as I woke up I started moving my hands and arms. Later that same day most patients are made to move to a chair and even walk a little. On my second day I walked a mile around the ICU (a little at a time - there\'s not much else to do: walk, sleep, repeat). Physical activity induces healing as long as you don\'t overdo it. Ease into it, but then be intentional about getting the most out of it. After a few (usually 4) weeks many folks start a cardiac rehab program which has strong well-established benefits. Wound care is important, so before you leave the hospital be sure you are trained in that. Finally, your body heals better if you don\'t have a lot of pain. So be sure to keep it under control. While I had a repair, I had to choose a backup replacement valve: biological or mechanical. I chose bio because I did not want to be on blood thinners forever. Another consideration for choosing bio over mech for the aortic valve is that a decade in the future replacement of biological valves may be done transcatheter instead of open heart or minimally invasive, and so much less traumatic. Successful surgery usually results in patients feeling significantly better than before. You should expect your chest tightness and shoulder pain (angina?) to go away and your stamina to increase. That will help you get more exercise and thereby slow down the osteoporosis\' progression, I\'d think. I\'d hope you workplace doesn\'t have the practice of labeling people \'damaged goods\" when they face and surmount a health problem. If anything it gives you more perspective and maturity. In any case, many states have laws in place to protect people who go on disability (which you probably will for the period of recovery). In California we are protected for 20-ish weeks after returning from disability. With planning, preparation, discipline, and no bad luck, you\'ll be raring to go after the summer of recovery and your co-workers will hardly believe that you had heart surgery. The best to you Carol. You are brave to face this, and smart to be asking questions. -- DVB

Hi Carol, I used to live in Deerfield Beach. Welcome to the HVJ... I am 47 yrs old and had a valve replacement on August 9th...I was back at work in late November.. I drive a taxi...I can honestly say I feel better than before surgery but when it comes to work endurance and stamina I am about 70%. I will try my best to answer some of your questions.... A second opinion is certainly something I would do.. The timing of your surgery should be based on your chosen surgeons opinion.. As for exercise...I exercise more now than before surgery...I find it a lot easier..better circulation.. Regarding recovery..the first month I barely wanted to leave the house, second month you are more eager to be active by the third month you can get back to driving and other things albeit at a slower pace.... I was replaced with a mechanical valve due to the fact I was in my late 40\'s......someone later in life may choose a natural valve and not have to be on coumadin, blood thinners.. Overall after the surgery you will feel better and have a different outlook on life...ALL FOR THE BEST.. GOD BLESS JOHN MADONNA LAS VEGAS NV

Hi Carol! Welcome to HVJ . . . I\'m sure you\'ll find it a very helpful place. I second Linda\'s suggestion that you get Adam\'s book and read it as soon as you can. It was VERY helpful to me and answered lots of my questions. I had my aortic valve replaced at the Cleveland Clinic in May 2010 and I\'m fine. It wasn\'t nearly as bad as I had feared. To answer some of your questions . . . YES, get a second opinion. I knew I wanted to have my surgery at the CC so I got my second opinion there. (They confined everything my doctors in South Carolina had told me.) As for the type of valve . . . some of it depends on your age and some of it is just personal preference. I did not want to take blood thinners for the rest of my life if I could help it, so I opted for a tissue valve. You can find LOTS of discussions about valves on-line. NO, you will not be damaged goods. This is a pretty mechanical procedure. They replace your valve and within a few months (give or take . . . some people take longer than others to heal) you\'ll be as good as new. Or even better. I have more energy than I\'ve had for years. When is an issue of your condition. Some people can wait a while after diagnosis, some have to have their surgery fairly quickly. That\'s a discussion you should have with your cardiologist and surgeon. If you have your surgery in early summer, you can be back at school in the fall. I work at a university and had my surgery in late May. I was back at work August 1st although, to be honest, I could have gone back earlier. Many people are back full-time in 8 weeks. As for exercise, your cardiologist\'s advice is pretty standard. You can exercise so long as you don\'t have symptoms while exercising. Listen to your body. It will tell you what you can, and cannot, do. When you first learn you need open heart surgery, it\'s VERY scary. But it\'s not as bad as you think. This is a great site to get advice and to vent. We\'ve all been there. Read lots of our journals . . . most of us have had good experiences (as good as major surgery can be!) Good luck! Ricki Shine

Hello Carol, I just started my journal a few days ago and got a very informative post about making a decision about having aortic valve replacement. I\'ll paste it below. Good luck. Gene \"If you look at the American College of Cardiologists Guidelines, they have recommendations for asymptomatic AS patients graded as \"severe\". You can get a copy at: http://content.onlinejacc.org/cgi/content/full/52/13/e1 I\'m cutting and pasting their recommendations for when to consider valve surgery for AS, which covers the full range of symptomatic and asymptomatic patients. Hopefully the formatting isn\'t too messed up. 3.1.7. Indications for Aortic Valve Replacement Class I 1. AVR is indicated for symptomatic patients with severe AS.* (Level of Evidence: B) 2. AVR is indicated for patients with severe AS* under- going coronary artery bypass graft surgery (CABG). (Level of Evidence: C) 3. AVR is indicated for patients with severe AS* under- going surgery on the aorta or other heart valves. (Level of Evidence: C) 4. AVR is recommended for patients with severe AS* and LV systolic dysfunction (ejection fraction less than 0.50). (Level of Evidence: C) Class IIa 1. AVR is reasonable for patients with moderate AS* undergoing CABG or surgery on the aorta or other heart valves (see Section 3.7 on combined multiple valve disease and Section 10.4 on AVR in patients undergoing CABG). (Level of Evidence: B) Class IIb 1. AVR may be considered for asymptomatic patients with severe AS* and abnormal response to exercise (e.g., development of symptoms or asymptomatic hypotension). (Level of Evidence: C) 2. AVR may be considered for adults with severe asymptomatic AS* if there is a high likelihood of rapid progression (age, calcification, and CAD) or if surgery might be delayed at the time of symptom onset. (Level of Evidence: C) 3. AVR may be considered in patients undergoing CABG who have mild AS* when there is evidence, such as moderate to severe valve calcification, that progression may be rapid. (Level of Evidence: C) 4. AVR may be considered for asymptomatic patients with extremely severe AS (aortic valve area less than 0.6 cm2, mean gradient greater than 60 mm Hg, and jet velocity greater than 5.0 m per second) when the patient’s expected operative mortality is 1.0% or less. (Level of Evidence: C) Class III 1. AVR is not useful for the prevention of sudden death in asymptomatic patients with AS who have none of the findings listed under the Class IIa/IIb recommendations. (Level of Evidence: B) On page 8 of the guidelines is a decoder chart that describes what is meant by Class I-III and Levels of Evidence A-C. Basically I-III is graded by decreasing levels of benefit compared to risk, and A-C by decreasing rigor of supporting evidence. Anyway, I took a copy of these guidelines with when I had my surgical consults and it made for very clear discussions of options and outcomes. You\'ll want to know some of the numerical measurements like ejection fraction, aortic valve area, mean pressure gradient and jet velocity from your echogram to know what recommendations apply. Be sure to read the text in the guidelines on asymptomatic patients. Since these guidelines came out there\'s been a significant amount of research that you can use to quantitatively assess your choices. I\'m not a medical doctor, but I advocate learning as much as possible about the treatment options, risks, and outcomes as possible so you can make as informed a decision as you possible that is right for you. What was right for me was whatever had the lowest risk and had me around in 20 years.

I had my Aortic Valve replaced with a tissue valve. I also had an Aorta repair on 12/6/2011. I walked two miles per day until the day before surgery. It has made all the difference in my recovery. However I urge you to consult with your doctor to make sure it\'s safe for you to do so. I\'ll be praying for you. Cindy Kenward

Hi Carol! You have already made a great decision by starting a journal on this site! You will be amazed at the support you will find here and how your questions will be answered by patients who have actually been in your shoes! We all have the same questions that you have and sometimes doctors don\'t really explain things so that we really understand what they are saying and also we are sort of \"in a bit of shock\" when we are first told. Also, i highly recommend you purchase Adam\'s book, it is invaluable, many of your questions are answered in the book. Mainly, I can tell you that the question of if and/or when you need surgery depends on the \"numbers\" revealed in your diagnostic tests and whether you have symptoms and how severe they may be. I highly encourage you to always ask for a copy of your reports at the time your doctor goes over them with you. It is much easier than having to ask for them at a later date, plus when you go for your second opinion and YES ALWAYS GET 2ND OPINION!, you will already have the report for them to look over. I know how you feel, I have been following my aortic stenosis for many years and I am scheduled for surgery at Cleveland Clinic on March 13th. The answer to my question about what I can do or not do was \"do your normal daily activities, just do not over exert and don\'t do any lifting of heavy stuff\". Not very specific I agree. Just take a deep breath, keep your journal updated, ask a bunch of questions and you will get answers. Go to a large medical center where they do a lot of valve repair/replacements. I think that is the most important criteria in making a choice as to where to go and also which surgeon to choose. This website is also very helpful in making that decision, you can see where Adam interviews the leading surgeons at conferences etc. Also US News and World Reports has an excellent site where they rank the top facilities in every specialty and you can see how many they do annually, what their \"score\" is etc. Good luck and get your questions answered so you will not be so anxious. Knowledge is power and comfort! Please keep us posted. Linda Dixon

Carol, Since your husband has recovered from triple bypass surgery, you probably have a realistic idea of what to expect- I think most of the obvious stages of recovery are due to the sternotomy rather than the heart itself. I had mitral valve repair, which is different, but I was told that some erratic heart behavior is to be expected, and it was not worrisome. I had surgery June 2 and was back to mowing the lawn and working really hard before Labor Day, so getting back to work shouldn\'t be a problem for teaching. You are young and should recover fast. Just follow Adam\'s advice and find the best surgeon available to you (and yes, second -and even third- opinions are very valuable in helping you decide), and put your trust in his skill. Best of luck to you! Vicki Pierson, mitral valve repair 6-2-11