Anne's Guestbook

Anne, Today is my one year anniversary of my having a minimally invasive aortic valve replacement at the Cleveland Clinic. You were so generous to leave your phone and e-mail info for me, to enable me to get in touch with you. Your journal was a real boost to me, and I thank you for being the first to reach out when I was in the midst of the confusion of what was to come. I carried your information with me like it was a pearl or diamond in my pocket that I could go to when I was really lost. Now I look back and have to ask myself why I never called. But I want to express my sincere thanks at the warm welcome you expressed. So today, when I celebrate one year and lift a glass, I hope you will join me. True to every word you wrote, my experience at the Cleveland Clinic far surpassed my expectations. I received wonderful care from my heart valve surgeon all the way to the smiling woman who emptied the trash! I believe that you were a very positive influence when I was in a state of flux, and I owe a lot of the smooth trip through clinic testing and surgery and post-op care to you. May you find great joy in this day! Hugs, Ginger

Hi Ginger, (French in Land of OZ) It has been a while since I have been on the Valve Journa and I'm not sure if I remember how to respond to entries in my guestbook. Let me know if you receive this, My email is "exqueen@aol.com" and my phone number is 303-674-8913. I would be happy to talk to you about my experience - what I can remember anyway!

Anne, I hope to be where you are in a few years! (Actually, I even love Evergreen. We used to stop for cones or fudge and something to drink when my folks lived in Denver.) But I was born with a bicuspid aortic valve, and about then years ago my family doctor heard a click along with the murmur and sent me to a wise and patient cardiologist. He did all kinds of testing, but for the last five years or so it has been an annual echo and appointment with him. This year he recommended I get a consultation with a valve surgeon. And he listed a bunch of specifications the Valve Center should meet to even consider going for a consultation, then mentioned a few. I believe only my aortic valve is involved and would like a minimally invasive procedure (Good taste like yours!) and hope to have it done at the Cleveland Clinic. (Can you tell I am in your shadow?!) I have sent off wanting to make contact with one of the valve surgeons there for whom I have a great deal of respect. But in spite of all the time I have had to read and research, I have questions. And I am hoping you can help me... Even if we are going for a consultation and they recommend waiting a bit before surgery, I cannot imagine it will be long. I am asymptomatic but I know people who have time lines that drastically change as symptoms come on. My biggest basic question are: 1) Can you give me an idea of the different tests that are done? and 2) who (in terms of health care professionals) does one meet with for a consultation prior to surgery? and 3) Can you give me an idea of how long the testing and consultations take? I have heard numbers all over the calendar from three days to seven business days. I know my husband's schedule will be much more difficult to work out than mine, because he has to arrange for coverage for his practice and times he is on call. I 'd like to have some idea so he can get a clearer picture of what I am asking of him. Do you have suggestions as to where to stay in Cleveland (besides your mom's house!)? Anything else you can give me recommendations or advice on? I actually am, of course, somewhat concerned, but I had a severe head/brain injury 25 years ago that still gives me problems with headaches and vertigo at times, and was diagnosed with breast cancer (which my mom died of at age 56 while I was pregnant with our first child) for which I had bilateral mastectomies with saline implants (not DDD) and reconstructive surgery in January through April of 2012. ( And there were two other major surgeries in August 2011 and March 2012 just to keep me from getting too relaxed!) So these past years have not been a picnic. I had not had any surgery until the first one in 2011, but still feel that this is a pretty big thing. The cancer was scary in different ways because there were so many unknowns of a different kind. I am blessed to be cancer-free and considered a cure, but am glad there has been a bit of time to recover from that before this started looking more imminent. Anne, please breathe in some of that great Colorado air for me! I miss it! There is a rock in one of the state parks not too far from you that the family goes to when we meet. I appreciate any help you can give me or any suggestions of others I might ask or call. Thanks so much. You are an inspiration! Ginger

Hi Anne Great news that you\'re doing so well. The best part is not having to worry when the shoe will drop. Know what you mean about meeting up with fellow heart valvers. The past two Februarys there are four of us who get together in Winter Haven, FL. for the weekend. Spouse come along and we tell stories, laugh and enjoy each other\'s company and blessings that our surgeries were successful.

Anne I really enjoyed your experience and thank you for journaling what happened with you. It is probably going to be very helpful to me, as I am facing aortic valve replacement soon. I am most curious. Did your partial sternotomy require you to go on the bypass machine. Thanks for sharing. Terry Hughes

Anne, I am going to be in Colorado soon. I sent an email to an e-address I found and you should have it now. If you don\'t get it, need to figure out how to make contact for possibly meeting....Barry on the mtn in NM

Thanks Anne, I will check it out next time I\'m at REI. Currently, I\'m just using my Iphone but with summer coming and no pockets...I would like something smaller. I love hiking/walking and started as soon as I could after my surgery. Janis Kielbasa 12 weeks post op.

Hi Anne Somehow you got four identical messages posted. I never did see this kiosk at the CC but will check it out locally. Sounds like something I could use. Glad you\'re doing so well. Just had my second anniversary on the 18th and although I\'m 2 years older (almost 73), I know I would not be doing as well if I hadn\'t had two valves worked on. Keep smiling and hiking. Do you get in the recommended 10,000 steps a day? Fran

Hi Anne Great update and so good to know you are doing so well. Are you on any medications for blood pressure, etc? This March will be 2 years since my mitral valve replacement and tricuspid repair, both done at the CC by Dr. Gillinov. Time has gone by quickly and I have done well in spite of some heart problems. I walk briskly a total of 12 miles a week and know I would never be able to do that had I not had the surgery. Stay healthy and happy and know you will continue enjoying life. God bless. Fran

Hi Anne. So glad u r doing well. I am new to this - with my own AVR COMING up 2-9-12. In st louis mo I\'m mid 60/ s very good shape ( I m told ) & very much looking forward to feeling like my old self. I\'m still,working - I\'m a professional speaker & travel quite a bit. I had a 10-12 mweek opening which was my signal from \" you know who \" that it was time to do this. One of the others on this siteI suggested I read yours & I can understand why. Thx for all the good info Oddly enuf my biggest concern is how\'s my hair gonna look ? But I\'ve been warned I may not care. Lol !!! I\'m hoping it\'s just a plain old valve replacement ( mini) & they don\'t find yucky stuff the day before w- the cath You pix is great ! We have a small cockapoo -well not so small. He is 23 lbs & I can\'t lift him. But he snuggles. Thx again for great postings & if there is anything woman to woman u feel comfortable in sharing - lay it on me. Best. Nancy. St louis. Mo