avr replacement

[queenie61]

I just found this site last week and all of your messages have been so helpful so far just by reading your experiences. I was diagnosed one year ago with a bicuspid aortic valve with mild stenosis when for 20 years prior I was told I had mitral valve prolapse and not to worry about it. I hadn't even seen a Dr. for it in ten years, what a shock! I went in for my one year echo and the stenosis has gotten much worse from mild to moderate (one number away from severe) I have to go back in six months and feel with this much degeneration surgery is surely just around the corner. What is the criteria for surgery being necessary? Some of you seem to be suffering greatly but still waiting for surgery? What are you waiting for? Do the surgeons want you to be at a certain number? Also, I am looking for the best surgeon I can find. Have any of you heard of Dr. Eric Skipper, Sanger Clinic, Charlotte NC, what sort of reputation does he have?

 

[sylviayasgur]

hi queenie!
welcome! you've come to the right place. everyone here is wonderful and very supportive. in fact, i don't think i could have made it through my husband, joey's surgery without everyone here holding my hand through it (before, during and after).
as far as the right time to have the surgery goes.... from what i've read on this forum, everyone is a little different. joey, although his stenosis progressed very quickly toward the end, did not become symptomatic until months before. in fact, we were hiking and mountain climbing 2 months before his ross procedure!! the numbers are what spurred his cardiologist to push seeing a surgeon. there are others on this site whose drs. urge them to consider surgery based on their numbers and others whose drs base it on symptoms. i guess it depends (?) on the cardio, the patient and how quickly the condition is progressing ( i know that was key in joey's case).
i'm sure others will join in shortly and have more to say and contribute on this. in the meantime, keep visiting here and please let us know what happens. have you had any tests done? if so, which? echo? tee? cath?
be well and God bless,
sylvia

 

[mainframe]

Hi Queenie.

I'm equally interested in the answers you will receive. I saw a cardiologist today, who told me my aortic value was down to .65 aperture , although I'm not symptomatic yet. I was told I should have surgery sometime in 2002. I'll probably shoot for summer.

He wants to have me do a treadmill test as I'm still exercising quite alot, then go from there. He seemed a bit quick though to recommend a mechanical valve because I'm only 44 yo. but I'm not sure about that choice.

 

[queenie61]

avr replacement

Mainframe,

Thank you for writing, It's quite a shocker isn't it? To feel healthy and be told something quite wrong is a lot to absorb. I'm not sure if our numbers are the same but my cardiologist explained my number meant the size of the opening of the aortic valve since mine is stenosed it cannot open all the way. I am currently at 0.98 he said 0.8 is severe and that I am closer to severe than not and it has progessed rapidly in one year. I am 40 and I do have symptoms, I have killer palpitations where it feels as though my heart is trying to turn over in there and I have mild chest pains and lately I have noticed periods of shortness of breath with not a lot of exertion. I hope your stess test goes well and you can keep feeling well.

Queenie

 

[queenie61]

avr replacement

Dear Sylvia,

Thank you for your response, I had an echo one year ago and my Dr. dropped the bomb of my dianosis. For 20 years I had been misdiagnosed with mitral valve prolapse. The doctors acted like it was no big deal and said I didn't even need medication if I could deal with the palpitations. For ten years I never even saw a Dr. about this, then another Dr. caught it and sent my right away for the echo a year ago. I went back last week and he said that the stenosis was mild before but it had progessed a lot. He said I am at 0.98 and 0.8being severe. He said to come back in six months I am assuming because it progessed so much I am preparing for surgery to be after my next visit. I am known in my circle as THE PLANNER therefore I am doing my research and looking for a surgeon I can feel comfortable with before I actually need it. Is this normal or paranoid? I just feel I could sleep a lot better if I have all of my ducks in a row. Thanks, Queenie

 

[Jack]

queenie61

queenie61

Don't wait too long; you don?t want a permanent damage to your heart, the heart is a marvelous device, it will adjust itself to any malfunctions and mask the symptoms from you.
Good luck with your decisions and don?t hesitate to ask your surgeon or cardiologist all the questions that you can think off.

 

[Bill Hall]

Queenie - There are threshold numbers for surgery. I had Aortic regurgitation and was well above threshold for surgery. I suspect I had no symptoms because my heart was good at compensating. I put it off longer than I should have and the surgeon commented to my wife why we waited so long. Good luck with your condition. Keep good track and find good advice and you will be OK.

 

[Mara]

Queenie
Welcome.

I had a bicuspid AV. Last March when the cardio said it was time to get it fixed, I was ready. I had been so fatigued for the previous two years.
My major symptom was fatigue, really nothing else to speak of. No blacking out, no chest pains, no ankle swelling. The cardio finally saw what he was looking for on the echo and said it was time. I did not second guess him, I was ready. I feel so much better than I have in years. The progression of deterioration was slow and you compensate for it.

Hey, the surgery is big and scary, but beats the alternative!
Best of luck
-Mara

 

[queenie61]

avr replacement

Bill--Thank you for responding, I understand putting it off, I have an uncle that was diagnosed with aortic regurgitaiton six months after my aortic stenosis was diagnosed. His Dr. has tried to manage his with medication, lowering the blood pressure but he has resigned himself to surgery if his next echo shows deterioration. Have you or any others noticed a family history? Thanks--Queenie

 

[queenie61]

avr replacement

Mara---I'm glad you're doing well, I have been tired for so long I Just accepted it as a way of life. What told your Dr it was time? Was fatigue your only symptom? I have palpitations and have experienced some dizziness and minor chest pain. I was explaining to a friend today that some days I'm ok emotionally but other days I feel so depressed. She said it was like a black cloud hanging over me. So many decisions, Which valve did you get? Do you take coumadin? How old are you ? How long did you know about your problem? Please write me back. Thanks, Queenie

 

[martha]

Hello Queenie,

I noticed in your thread that you metioned charlotte. Do you live in the south? I live in durham, not to far away. I had my surgery at duke. They are listed as number six in the country for heat. My surgeons name was donald glower. There are two others in this group that had there surgery there and used the same surgeon.I choose the homograph. Only need to take a baby asperin a day. If I can be of any further help, please let me know. Good luck...
martha

 

[alpage]

After I was diagnosed with Bicuspid Aortic valve I was told I would likely require surgery in about 5 years. I had no symptoms at all and my valve was not in bad shape at that time. I had an echo every six months for a while, but since the valve wasn't getting much worse we switched to every year. Then about a year ago I started feeling a little bit more tired, but still able to exercise. Valve opening was greater than 1.0 cm2 which is not too bad. But my cardiologist wanted to see me in six months.

So the valve opening continued to get smaller - 0.9 then finally 0.7. At the most recent checkup I was really starting to feel fatigue and loss of exercise tolerance. That's when we started to talk about surgery. I want to see a highly rated cardiac surgeon, but he's pretty busy so I may have to wait 4-6 months for surgery.

My cardiologist did not give me his complete checklist for when surgery is needed. He is weighing many factors. But certainly symptoms are important, valve opening (in the case of aortic stenosis) and other measurements of valve function, ECG, enlargement of the heart, coronary artery disease, etc. etc.

I'm not trying to second guess him. For me personally, having symptoms was sufficient reason. If I had fewer symptoms but my tests told him that surgery was required I probably would have to take his word for it.

I think you are doing the right thing by planning NOW and not wait until you are told you really need surgery. If I knew then what I knew now I would have talked about surgery about six months sooner. But no use crying over spilt milk. I'm not feeling too bad day to day.

Alan

 

[queenie61]

avr replacement

Hi Martha,

Yes, I am from the South and Charlotte is closer for me than Duke but Dr. Eric Skipper in Charlotte is who my cardio recommended. I have seen references to Dr. Glower and am interested in him. Did you have minimally invasive or the whole nine yards? What made you choose the homograft? This is such a hard decision.

Thanks, Queenie61

 

[queenie61]

avr replacement

Hi alpage,

Thank you for responding, It sounds like our situation is similar except mine seems to be progressing faster. Thank you for making me feel better about planning now. Sometimes we just need to go with our gut instinct and mine tells me to get my ducks in a row. It is so tempting for me to go to Cleveland or Houston where I know they do these every day, but it would be so much easier on my family if I stay closer to home. I am asking for recommendations because like you if I choose a more famous surgeon I'm sure there is a waiting period even for a consultation. I hope things go well for you.

Thanks, Queenie61

 

[Jean]

Queenie

Queenie

I went to the Cleveland Clinic two years ago for my AVR...I live in Michigan. I only had to wait 5 weeks for a consultation and surgery, but my surgeon's family was involved in that Air Egypt crash and he postponed me for after the holidays. If not for that, I would have had a short wait. I heartily recommend the Cleveland Clinic.

 

[Mara]

Queenie:

Fatigue was really my only symptom. I never had dizziness, orchest pain. I had some palpitations and some tachycardia.

I was diagnosed wiht my heart condition at age 4. I had my surgery at age 33. Since 1995 I had been on medication, Lanoxin and Corgard. Now I am taking one baby aspirin a day,and that's it! And I stop those in January.

I had the Ross Procedure. My cardio and the surgeon and even my pediatric cardio (whom I called to get his opinion) all thought it was the best operation for me. It is not for everyone. So, my pulmonic valve is now my aortic valve and I have a CryoValve SG as my pulmonic valve. I do not take blood thinners. Not taking blood thinners was a big part of my decision to have the RP.
I did some research and discovered that young women who go on bloodthinners can have troubles during menopause. Since both my mom and her sister had hystorecotomies because of heavy bleeding, I opted to stay far away from coumadin.

Now, there are a lot of folks on VR.com who are on coumadin and are taking it in stride. so it's not bad.

I never really felt depressed about the surgery. And, because I lived most of my life knowing about the heart problem, I never really thought much about it. I knew my limitations. I was ready to have the surgery becuase I felt so tired and cruddy all the time. I just wanted to nap all day. So, getting psyched up for the surgery was not hard.
Now, I feel great! What a difference. You will not believe the energy you will have. Cool.

Good Luck
-Mara

 

[maxximom]

hI Queenie
I Live in Raleigh and had myAVR and triple bypass down Sept 23 at Duke by Dr. Glower. I had a St Judes Toronto Porcine Valve. I didn't want a mechanical valve and since I am older (70) I wasn'ty to worried about having to have a valve that would last forever. Dr. Glower is a specialist in valves and in Minimally invasive surgery..in my case because of the triple bypass it wasn't possible. It might be worth a trip to Duke to get another opinion. I had considered going to Clevland and had sent my recors there..but then Sept 11 happenend and I decided to stay here at Duke. Dr. Glower is very easy to speak with and he will spend all the time you need to answer your questions. If you want to email me I will be happy to give you my phone number and will try and help you if you wish. Good luck with any decisions you make. I know its a lot easier to be near home..but the best outcome is very important.
[email protected]

 

[Peachy]

Hi Queenie

Welcome to the site. I am 40 and am on the waiting list at present for AVR. I have known about my bicuspid aortic valve since around 6 years old and have been having annual checks every year since. I've had no problems whatsoever until August last year when after my echoscan I was asked to come back in six months as they weren't happy with the results of the echoscan. I went back at the start of this year and had another echoscan. After this they said that the figures were showing that I needed surgery. They said the reading was 55 (not sure what this means). However as I wasn't having any symptoms then there would be no point operating as I wouldn't feel any benefit. I was then asked to come back in a year. A few months after this I started to notice that I was getting breathless when I was hillwalking. Put this down to not walking as often as I used to. However I noticed I was getting breathless walking up stairs. I was also having pains in my chest. It felt as if someone was stabbing me in the heart. Even at rest I get them. I also have dizzy spells and am tired all the time. Anyway the end result is I went back to the hospital and they didn't hesitate to put me up for surgery. Unfortuately in Scotland you have to join the NHS waiting list. I should have sugery around Springtime. I have asked for a pig valve as I don't want to have to take blood thinners as I lead an active life.

Peachy

 

[McCln]

Queenie

Queenie

That is the problem with cardio dcotors who do not want to spend time with the patient, to be throrough an examining. You are going to be fine. Just hang in there. You know you have to have avr soon. Just don't get stressed out and be glad that the problems have been caught. I was in a different situation. I was born with a heart murmur, a genetic defect. I had repair surgery in 1973 at age 8. Then 28 years later, AVR at 36. So I have done good. But had a losy doctor, all he kept saying was about the blood pressure, which he took to read 500 over something. He never said over what. I should have been dead then. But two years later, after making sure my mother was taken care of first. I got with a good doctor who told me it was time for surgery. When I was eight, they told me then that AVR would happen in the future. The repair had a guarantee of fifteen years, I beat that and then some. I was very lucky, in surgery, the valve was in bad shape. The surgeon said it was the worst he had ever seen. So I should have had it done five years ago when the quack was playing with my blood pressure. But I am improving daily and back to work. You will do fine also. Just don't rush anything after surgery. You will be fine.

 

[martha]

Dear Queenie,

I choose a homograph because I didn't want to deal with the coumadin. The ticking, and other problems that having a machanical valve can have. Yes, I agree, making the choice is a hard decision. Those of us that have gone before will tell you. You must make the decision that is good for you. I use to ski, and had show horses. One day I hope to do all that and more. For this reason I decided the homograph was right for me.

Now onto your question on having the surgery minamilly. So many of us have gone in this direction at one time. You want your surgeon to have all the room he/or she needs to preform the surgery. If I had choosen machanical, I could have had it done with a minamal incision. However, in order to insert the homograph they need more room. My surgery was six hours long. According to my surgeon, all went as clock work. (there were no problems)

You said you are closer to charlotte then durham. It's important to feel confident with the surgeon and hospital you do pick. Meet with this person and decide for yourself. Just because your cardio recommened him. Doesn't mean that you will feel this is the surgeon for you. If I can be of any further help to you please let me know.

martha