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

Hi Again Anne, Another question if you don\'t mind . . . How did you decide on which surgeon to have at Cleveland Clinic? I am curious about what your thinking was and what kind of research you did to come to that decision. Thank you and be well. Ruth in Maine

Hello Anne, Read your journal and am so glad to hear that you\'re doing so well. May you continue to do well and live a long and happy life. My husband and I are also dog lovers. Unfortunately, two of our old dogs died recently bringing our number down to 7. My name is Ruth, 64 yr.old,, live in coastal Maine. I have mitral valve prolapse and will need surgery in the near future. I have a consultation appt. with Dr. Griffin at Cleveland Clinic Jan. 18th and I guess he will tell me when surgery should be scheduled. Like you, my doctors here were not thrilled when I told them I would have the surgery at CC. They claim they have a \"perfectly good hospital\" right here. Don\'t think so. I think what they really meant was they want the business $$$$$. That really disappointed me and made me lose confidence in them. Also like you, I have quite a bit of fatigue, but thought I was just getting old and out of shape. I now believe it is related to my heart valve and hope to have more energy after the surgery. I have a lot of questions I\'d like to ask you and others who went to CC. I am very nervous and anxious. How did you manage with flying and getting through airports and change of planes? Did you have any concerns about your local cardiologists managing your care post-surgery? Was the breathing tube in or out when you woke up? If in, how did you find that experience. That frightens me!~ Did you have your cardiac cath done at CC? If so, how was that experience? That also terrifies me. I\'m a big baby. Was your husband given unlimited visitation with you in ICU? Anything you can share with me regarding your experience at CC would be greatly appreciated. Many thanks and continue your wonderful healing. Ruth ruthjohnhowell@gmail.com

Ann Just caught up with your journal - You are 4 months ahead of me - my surgery was Nov 22, Sounds like your decision to go to CC was the best one - I almost considered it but since we are in NY I had good options right here. I\'m interested to know how long before the dull pain in your chest from the incision and wires goes away? I still need to sleep slightly upright and if thats the worst of it - its okay. Seems like everyone who has AVR owns a dog - must be a prerequisite. Ours is a Portuguese Water Dog - Maggie and our concern for what to do with her was most important. Glad you are doing so well. Diane P

Hi Anne The walking class I attend is here in our neighborhood center. It is shown on a large screen and there are 20-30 women who attend. Mon-Wed-Fri 9-10am. The DVD is called \"Walk Away The Pounds\" with Leslie Sansone. There is a 3 mile and a 4 mile version. My goal is not to lose weight (but a few pounds would help) but to get a cardio workout. Hopefully you can find it on-line or at a store. If you do get it, let me know what you think. Have a great week. Fran

Hi Anne. It was good to read your journal entry. Yep, I\'m still here - reading more than writing. I need to update my journal one of these times but, as you say, life keeps getting in the way. So, the elk are doing what elk do in fall, eh? I have some photos of elk reclining on the ground out in front of our house - I remember thinking they looked like great big dogs lying there. There was one that liked to hide out under our deck & used to startle me every time I\'d get home from work late & it was dark. I\'d stick the key in the door & hear a big snort - guess I woke him up. We get a lot of deer here in Central Texas, but they are smaller than the deer in Colorado. We have deer, armadillos, lizards, rattlesnakes, scorpions, & tarantulas. A coyote sometimes too. No elk though. I\'m glad your cardiologist seems to have finally realized that the Cleveland Clinic was a good option for you. The main thing is, you knew it & did what you had to do. It\'s great that the bill turned out so well too. I\'ve been keeping a spreadsheet on all the costs I\'ve incurred this year - $167,000+ so far, although the insurance reduced that significantly before paying their portion. I feel very fortunate to be among the insured. As for me, I\'m back doing all the things I did before the surgery & have been for some time. Life\'s good. Take care - Joy

Hi Anne, enjoyed reading about your expereience. As a women i have a couple of questions so I can be prepared as possible. bras, what did you do ?? PJ\'s thought I would need a button up top. How long before you were able to slip a top over your head. I appreicate your response. nyangela1954@hotmail. com. please title it heart value, so I know it is not spam. thanks, angela I have surgery in Jan.

Hi Anne Great update. We spent part of our 50th anniversary at elevation. We were at Yosemite last month and would never have been able to be walking at 6000 feet before my surgery. I would have been too breathless. Life is good and I need to post in my journal also. Enjoy life, sounds like you are and yeah for the Cleveland Clinic. Fran

Hi Anne! So good to hear from you and to hear you\'re doing so well. Me too!! And like you, I\'m so glad I went to the CC. All my docs here are amazed at how small my scar is . . . my internist wondered how they got their fingers in there!! I keep telling people that if they need this type of surgery, they shouldn\'t hesitate to go to Cleveland. (I actually have a friend getting his pre-op tests there today.) Some have wondered at the cost as did I before I went. It turned out to be the bargain of the century . . . Final bill was $148,000. My insurance paid $90,000. I figured I\'d pay the rest. But no, my bill was - are you ready - $450.00! I couldn\'t believe it. I had an ultrasound a few weeks later and that cost more!! Enjoy the beautiful fall weather in the mountains. And your new energy! Ricki

Hhi Anne, I too am an agility dog person in Colorado! I will be have valve replacement in a few weeks. can you tell me how you like your doc at CC? I am trying to decide whether to stay here in Fort Collins or go there. The cardiac surgeon here is supposed to be a rock star, trained with Starzell (sp?) in Pittsburg (a famous transplant guy). However I am afraid that he might not have as many valves to choose from if my valve opening is small. not sure if this is a legitimate concern or not. Laurie Cadwell

Hi Anne, Sounds like your doing terrific. That is wonderful. Isn\'t it amazing how wonderful you feel so soon after surgery? It still amazes me, too. I, too, noticed a tremendous difference when I went for my first real walk around the block and up inclines. I didn\'t have to stop every few steps to catch my breath, no heaviness in my chest, no chest pain, it was absolutely wonderful. The surgery and recovery was nothing that I had imagined, not even close. Hey, no complaints, that\'s for sure. I wish you a continued uneventful recovery, Diana

Hi Anne. I was just thinking about you. Glad to know your recovery is continuing to be amazing. It is very cool that you\'ve found that you no longer have weakness in your legs. Have you found a flat area to walk there? We used to walk in Bergen Park in the winter because it was flatter than most & we were hoping not to slip on ice & fall on our butts. Nothing\'s perfectly flat though, is it? That\'s too bad that the Evergreen Nursery closed, but not totally surprising. They had such a time staying open once winter shut down the growing season. Pete wanted me to ask if the Albertson\'s is still open. Keep on getting better & better! Joy

Anne, you are my hero and inspiration. I can only hope to come somewhat close to your experience. I love your comments about working. You definitely have a way with words. Maybe if your husband thinks you should work you should write a book or something. I feel the same way about working. I hope I will feel like maybe volunteering or at the very least getting my sorry b---- to the YMCA on a regular basis. Keep up with those wonderful posts...Linda Stahl

Anne, It is so good to hear how well things are continuing to go for you. It is an amazing thing you went through, and your recovery has been textbook. I think the attitude and expecations you took with you to Cleveland help to make a big difference. Great work, Mark Keller, TX