Vicki's Guestbook

Hi Vicki.. even the #1 clinic can have a few...ummm..bad eggs, should we say? lol and believe me I met a few too. When the floor manager came up to interview me before discharge...she asked...and I told.. Before, I would have been the mild & the meek and said...\"everything was just fine\"...well this time I felt, \"this is a teaching hospital....so here goes...I am teaching YOU on just who could use some people skills!\"... Find another doc, Vicki. The clinic has great, skilled cardiologists...You don\'t have to take that from ANYONE at the Clinic....aide...OR doctor.. :) Take care! Connie T

Hey my first doctor said 5 months to 5 years also. My new doctor said it is really hard to judge these things. Sometimes they just hang in there then all of a sudden it goes down. His guess before he gave me my last test was within 2 years. That was a little better answer but he heard that I was having symtoms. So I just now fell off the fence. Last Sept I was 3.7 in Feb 3.2 and valve had to be at least 1. My valve in Feb was 1.1. not it is .946. So its time. just wasnt expecting as soon as possible. I think something else is there that I dont know about. I just want to get it over with. Good luck Getting there LInda H

HI Vicki, Get another doctor asap. He had no business doing those things. Also if you dont have the reports from all of your tests you need to get them. They have to give them to you its law. They will come in handy for the next doctor. He shouldn\'t have been saying negative. He should have said what severity you are or what your aortic valve measurement is. Besides it is recommended to have a second opionion or more if needed. I went through the same thing. When I had my first echo the cardio doctor wanted to see me right away. Well that sends flags up you know something is wrong. He told me it was aortic stenosis, anuersym and regurgitation and it was moderate. See ya in 5 months, but if it turns out to be bad he would send me to Duke or Emory. That was scary. So in 5 months I saw him again after he did a tee test. He said it was a little worse and showed calicifcation and he would send records to a surgeon. When I went to his office all he told me was to quite googling and yahooing and I was getting old. At 65 that did not go over well. So everyone hear told me to get a 2nd doctor. So I did. I should him all the reports that I had and he sent me up for another echo that I think turned out a lot more info on it and the nucular stress test. So when I saw him he said cause I was having all of these symtoms now we talk and heart cath is next and then surgeon. But what he told me was not its your time he said as soon as possible. Oh and he told me I wasnt old and info was good to know. So I said you are hired. So hope all of this helps. And dont feel bad about long posts cause I think I just wrote you a very long one. lol Good luck and hang in there. Getting there LInda H

Vicki, From the way you described your meeting it seems clear that the cardiologist you saw is terrible with people. When I went to CCF I met with Dr. Juan Plana (I believe that was his name). He seemed great. Very calm and listened to all my questions. He is from Colombia and I recognized his accent from a college friend who was also Colombian. We had a nice chat about that. Feel free to look him up and I would recommend getting back there by fall since the current cardiologist was useless. Even the best clinics can have a few bad apples. Don\'t be discouraged and like with most medical issues, the squeaky wheel gets the grease so don\'t hesitate to kick and scream a bit! :-) Best of luck, -Thomas H.

Vicki You need to request a different doctor. Feeling like your doctor is on your team is soo important. Your doctor should listen and help you find out why you are feeling this way...not telling you its made up. Don\'t put up with this! If you feel like something is wrong...there probably is something going on. Listen to your body and find a doctor who will listen and respect you. Also I would send ccf feedback...they should know what happend. I have to believe this would make them very upset.

Hi Vicki, You really do need a new cardiologist. I went to CCF for my surgery, and every experience I had was a good one until my last visit. I had an experience similar to yours, but not as bad. I can give you the name of a WONDERFUL cardiologist at CCF ........Dr. Griffin. He is kind, compassionate and very approachable. He is booked up pretty far in advance, so plan for that. There is nothing more stressful than not liking or trusting your doctor when you have a serious condition. God bless and good luck! Deb Z

Hi Vicki, No question on moving cardiologist , as Nike says Just Do It ! Dump him, you need to be able to trust him/ her It is your body, you need to know what you want/ need as an outcome. Ultimately your decision so be as informed as you need to be comfortable with what is planned, fallback plan and who is doing it. I ended up \"interviewing\" three consutantsb and eded up with a superb consutant/ surgeon in one of the best heart hospitals around. I prepared a seven page interview sheet for my Consultant and was frankly quite blunt at times. One of the Consultants a professor of cardiology at a teaching hospital. Pretty good stats but not in my valve. After a quick discussion on my question \" What is your rate of success going in to do a repair, versus ending in a replace for mitral valve specifically\". Anwer 60-80%, my next statement was \" sorry you are not good enoough who else can you refer me to to get to better than 90%\". Her expertise was in Aorta not Mitral Valve, She was open, understood and referred me onto Mr Wells at Papworth in the UK. His rate is 99.9% when he goes in with the intention of a repair. No competition here, the rest is history. I am happy to share the Questions I asked if that would help you. It\'s a word document with comments. At this point everything will feel as if it is happening in slow motion. Stick with it, you have a whole HVJ support team pulling for you. Paul R

Hi Vicki, Yes, try and get another cardiologist who can speak to you frankly and honestly. He/she is the person you will interface with before and after the surgery and trust between the both of you is so important I think. Symptoms are a big part of the surgery equation according to my cardiologist. My cardiologist is very very cautious. I kept e-mailing her my symptoms and she finally referred me to the first surgeon. He said my cardiologist didn\'t know what to do with me since I seemed functional except I had symptoms. I eventually saw 3 surgeons who where ready to cut me right then and there!!! I felt so flattered to be chosen for the knife... Anyways, that is my 2 cents. A different cardiologist could better explain your SOB and the possible cause (it may be your aortic valve after all.....) Good luck - keep on ticking!!! Lee Castro

wow, what a jerk of a doc that one is, he sounds like he\'s lacking basic people skills. Can you request another doctor? I think some doctors are still quick to think women make up symptoms, that wolf story was so innapropiate, I would request a diffrent doctor, one that treats me with respect, after all being older does not mean we are going senile and need to be talked down like children, I am soon going to be 50 and I think I would slap my doctor if she treated me like that.

Hi Vicki. You\'ll be fine, they just want to see how far you go before you get out of breath. You can use this as a chance to get a read on your current heart capacity. Then you\'ll have a good basis for before/after comparisons. Oddly, I enjoy my stress tests. -- DVB

Hi Vicki, If this is just a regular stess test you will be fine. I just had a nucular stress test and it was pretty much the same thing except you have an IV and they inject nucular dye in it. At the last minute they just had me lay down instead of the treadmill. I survived it. I dont think you will be running however. They start out slow and then when you are use to it, speed it up a little and then climb. They told me they wanted my heart rate to be at 132. Good luck. Let us know how it turns out. Getting there LInda H

Stress test isn\'t too bad, pre-echo and then running on a treadmill with increasing inclines unil you tell them to stop. Then they do another echo on you and done. For me it was what finally identified that there was a problem, soma definitive test that takes your perception of how you feel out of the equation....which I liked. Trent V

Hi Vicki, A stress echo isn\'t bad. They only make you do what youre able to. You tell them when you need to stop. You\'re monitored the whole time and are in good hands during the entire test. You\'ll be fine, try not to worry. Nancy B

Hi Vicki, Anne again. I feel great - I\'m 71 on Friday so not exactly a spring chicken but I maintain a very busy schedule. I did cardio rehab but only started about 5 1/2 months after my operation. My cardiologist thought my recovery was so amazing that I didn\'t need it. But I knew I could be better and wanted to be monitored as I tried to improve my over-all conditioning. Now I always aim for about 12,000 steps a day plus work out with a trainer twice a week. Can\'t tell you how much better you will feel! Yes, you are lucky to live so close to CC. But traveling back to Ohio wasn\'t difficult because CC makes it very easy. By the way, before my surgery, I thought I didn\'t have any symptoms but, as I look back, I did. Keep us posted and try to stay positive. Anne Shannon

Hi Vicki, First of all, you are seeing the best heart specialists in the WORLD so feel free to let them know everything. I had surgery at CC two years ago and it was amazing. I knew before my doctors in Denver told me that it was \"time\" so trust yourself. My murmur had been followed by my doctor and cardiologist for about ten years but, believe me, having the surgery was a lot easier than worrying all those years about that stupid murmur. My recovery has been amazing and I am so happy I found CC and one of the best surgeons in the world. Anne Shannon

Hi Vicky, My cardiologist took a \"wait and see\" attitude towards me. I\'m relatively young (48) and looked in good health. I made a calendar and wrote down my symptoms I felt for each day even if it was only for a few minutes. Since I had the ability to e-mail my cardiologist, I did so consistently. After a couple months of this, she recommended me for surgery. Friends and family seem to react extremely. Like it is imminent death to maybe I should lose some weight and I\'ll be OK. Good luck to you. I\'m praying for you. Warm Regards, Lee Castro (Mitral Regurgitation - no surgery date yet)

Hi Vicki... Unlike you, I did not know I had a bad valve until it was \"wam, bam, it\'s time to do this.\" I only found out in Feb when I was in the hospital for knee replacement. I was afraid to tell family & friends just because of the things mentioned here in your guestbook....like I did something to cause this....one family member thinks it is because I take drugs for my osteoporosis... but like Linda Dixon stated in her post...we at HVJ know better. I try to keep positive & not let the opinions of my surgery from others, cloud my real focus. Unfortunately, because of some family opinions, I have elected to not tell everyone until after the surgery. This certainly isn\'t for everyone.... but this year I decided to \"put myself on the list\"...and that includeds MY feelings.... You have received great advise from your post.......people do mean well....sometimes they just don\'t know how to express it...we have had time to \"come to grips\" with this diagnosis....we have had time to research it & understand it........and they have not... Good Luck to you as you continue this journey....we are all here to support you.. Regards, Connie T

I understand, my family was very supportive, but at times it was if you cannot function as a normal individual anymore, but I kept my patience and understanding that they believed that they were doing best for me. Now at work was very different, when I announced I had a bad valve my boss started taking duties from me, addressing issues that I would normally address, etc, I finally had to have a conversation with him,and explain that no one wants to feel that they\'re being treated differently, he inderstood. This was a eye opening experience for me also, I realized that I was just as quilty with handicap individuals, I now know how I had probably made them feel, so all in all I learned a lot from this...

Vicki, The physical and psychological dimensions tend to be related. Traditionally, cardiologists and surgeons have waiting, recommending postponing OHS until symptoms are pronounced. That has changed substantially in recent years, especially among the top physicians. Although surgery is a real risk, for many period waiting and living with a heart that is gradually degrading is also risky. Today many people have surgery before they feel any symptoms. Discuss with your cardiologist, and ask if you may consult with a surgeon soon. Even if you decide to wait, you will know more. - Jim Smith

Vicki, I think (in my humble opinion) that people mean well...seem to disregard your concern...they don\'t want YOU to worry. At least, that\'s what I hope, lol. We hear so much about poor lifestyle choices causing heart disease and to a great extent that is true, so those who don\'t \"know\" about valve disease sometimes think it come about because of \"something we did or did not do\". We here at HVJ however, know better! I do suggest that you call your cardiologist and at least tell him about your worsening symptoms. My stenosis stayed fairly stable for several years and then \"took off\" in six months from moderate to critical. What you are experiencing sounds like what I was told to expect if and when I began to have symptoms. If you are already having symptoms and they seem to be getting worse, it won\'t hurt to call him. I totally understand \"the waiting game\", I endured it for years and the waiting and wondering and worrying can take a toll. We are here to help you get through it!!! Linda Dixon, AVR 3/13/12

Hi Vicki, I had AVR in June for bicuspid valve. I am recovering well, but it takes time to heal from this big procedure, and have stamina again. I also noticed before sugery \"friends and family\" were nervous and asked inappropriate questions. Discussing this just brings out gut fears in most everyone. Try to prepare yourself, and filter their comments. Eliminate those that really tend to upset you! You will do great! Tracy

Yes that Metapropolopoplcycle stuff is one giant nap maker. When I take it it is almost like taking a sleeping pill. I am still on it even though I am back to work full time. I try not to even sit down so I don\'t head off to la la land. You have some time before you go in I taake it. So do some research, start getting your place ready for your recouperation, read the journals. I say read them all because while the Doctors will tell you what you want to hear, it isn\'t all roses and banana shakes. I say your body is about to go through some trauma and it will not like you much for a few weeks. But it doesget better, you feel stronger, and will have a new zest for life and far greater appreciation for your health and family. SO stay calm. God Bless and keep you relaxed. Paul G.

Hi Vicki, I am the other Linda in SC but on the other side of the state. I am 65 and am waiting just like you. About 6 years ago I was told I had a murmur and last year on my birthday was told aortic stenosis/regurgitation and anuersym. It is moderate but I think it is getting a little worse as I am getting some new little problems. I will be seeing a new doctor very soon so I hope I get some good answers. I will look forward to following you. Hang in there with me and we shall prevail.Good luck For the long haul Linda H