Still Waiting

[Gary Miller]

Hello everyone I am New to this web site. I've been wating for 7 years to get AVR. Had many symptoms off and on during the wait. Hard to know when to be concerned or to just blow it off as I've been in the ER more times than I care to remember waiting for the blood test to came back and of course its always negative. Been on the 6 month ECHO's for 2 years. My cardiologist is very highly reccomemded but sometimes I feel he might be dragging his feet a little. I'm 62 and he generally leans toward Bio valve versus the Mech. The On-x seems to be the ideal fix for me as the last cath showed no CAD and minimal LV chamber enlargement wall thickening. I had an ECHO yesterday and will be seeing my cardiologist tomorrow. Had chest pressure and dizziness for a couple of weeks ( had it before but is worse now) Numbers are close (AVA 1.0cm, 41mm gr, milddia asendaorta 3.7) I think I'm ready to tell him that we need to talk to a surgeon this month, if he says to keep waiting and watching. Please comment

 

[AgilityDog]

Tell him what you think. If you are feeling more symptoms, then push to talk to a surgeon. But you may not have to "push."

My cardio had me on the wait list for my second OHS, for about 4 years. He thought it was go one time, but the TEE said to hold off. Then, 18 months after that TEE, I started seeing little symptoms - about 2 weeks before my 6 month visit.

Low and behold, I never had to say a word: first thing out of his mouth after my echo was: Time to see the surgeon - my EF was down. When I told him about the recent SOB and chest tightness, my symptoms only reinforced his recommendation. I was feeling the effects of the reduced ejection fraction.

 

[sarahsunshine]

Get a second opinion, especially if your doctor doesn't seem to be listening.

There are some people from Florida who recommend other Cardiologists.

 

[Mentu]

Hi, Gary, and welcome to VR. If your aortic valve area has decreased to 1.0 cm2, I think it is time to start pushing the cardiologist. They so often want to see more symptoms but that small valve area is not going to improve. If your cardio still thinks you should wait, try to pin him down as to the specific warning signs that surgery is necessary. This will give you a clearer picture and a better base of information should you chose to follow up with a second opinion.

Larry

 

[Greg a]

Hi, Gary, and welcome to VR. If your aortic valve area has decreased to 1.0 cm2, I think it is time to start pushing the cardiologist. They so often want to see more symptoms but that small valve area is not going to improve. If your cardio still thinks you should wait, try to pin him down as to the specific warning signs that surgery is necessary. This will give you a clearer picture and a better base of information should you chose to follow up with a second opinion.

Larry

or as Sarah siad SECOND OPINION TIME .............by the way WELCOME TO OUR OHS family

 

[epstns]

Gary,

Welcome to vr.com. Your situation seems very similar to my own. I had aortic stenosis and a "probable" BAV diagnosed in my mid-50's, then waited until early 60's for surgery last year. If you're having chest pressure and pain, I'm surprised your cardio isn't reacting to that as a symptom of progression of your valve disease. I would be sure to press him for an answer and if you are not satisfied with the answer, seek a second opinion. If the cardio is offended by your need for a second opinion, he is not the right one for you.

As for valve selection, there are of course two schools of thought. The mid-60's used to be the age at which surgeons began to implant tissue valves instead of mechanical. When I discussed valve selection with two surgeons prior to my surgery, they told me that that age point has been moved down to the mid-50's, and that the third-generation tissue valves are expected to last long enough even in the younger patients. Cleveland Clinic now implants something like 85% tissue valves in their patient population, and not all of them are older patients. I'm not trying to sell you on one valve over the other, but I do suggest that you hold your own judgement until you have a chance to discuss it with the surgeons who may be doing your surgery. When you have the benefit of their insight and experience, you will be able to make an informed decision.

Don't let them make you wait for surgery unless you want to wait. After all, the patient is the customer here, and there is no doubt that you will need surgery at some point, sooner rather than later.

 

[Gary Miller]

Update: The echo hasn’t changed much they are saying, I haven't gotten a copy yet. He wants another stress test in two weeks. Last test in 08 modified Bruce 11 minutes 40 sec 160 bpm max peak 230/110 bp. There is no way I do that now! I understand his reasoning to wait as long as possible. I have noticed that there is very little data on 15 year plus survival rates in the aortic position. On-x is doing the most advertising but they only have a 15 year track record. St Jude and the other valve manufacturers are not publishing any long term survival stats. Everything I have read says about 10 -15 years max in the aortic position. The 2009 Cardiothoracic Surgeons conference indicated that their goals for the next decade were to improve survival rates for AVR. Anyone heard any new news?

 

[Julian]

Update: The echo hasn’t changed much they are saying, I haven't gotten a copy yet. He wants another stress test in two weeks. Last test in 08 modified Bruce 11 minutes 40 sec 160 bpm max peak 230/110 bp. There is no way I do that now! I understand his reasoning to wait as long as possible. I have noticed that there is very little data on 15 year plus survival rates in the aortic position. On-x is doing the most advertising but they only have a 15 year track record. St Jude and the other valve manufacturers are not publishing any long term survival stats. Everything I have read says about 10 -15 years max in the aortic position. The 2009 Cardiothoracic Surgeons conference indicated that their goals for the next decade were to improve survival rates for AVR. Anyone heard any new news?

IMHO the 15 year stats are bunk and misleading. You can't live forever and if you live to be 85 years old you can't say God cheated you. Most of these stats are based on people who got the valve after 55 years old and died in there 70's or 80's due to being OLD or something unrelated to the heart! Not because the valve has failed.

My cardio is confident that I should live to be in my 80's and I'm 29 years old at this point. If I truly make it to my 70's I cannot complain. My cardio is pretty confident I will make it past that with my current equipment.

This forum is full of people who have had tissue and mechanincal valves 20 years + Some damn near 50 years with a mechanical valve. No worries.

 

[Fundy]

From what I gather most mechanical valves in aortic position will last a lifetime usually, and at your age 10-15 year durabilty for tissue valves should be probably surpassed.

My surgeon mentioned that at age 65 tissue valves would last 20 years or more 80% of the time.

 

[Nancy jane]

Hi Gary. I took my own film (cd) to 2surgeoons and interviewed them as well Cardio guys like to wait for symptoms. Surgeons tell it like it is. Both told me normal valve is size of a quarter - mine was size of pencil eraser I didn't want to wait for more symptoms. Now nearingweek 3 post op & doing great. Recouping in fla keys. Can't get much better that that ! Nancy Jane

 

[Rebecca]

My last summer visit with my cardio doctor I told him I was always tired and he told me that he did not think I was tired because of my valve. He did give me a referral to a surgeon. Before my visit with the surgeon a neighbor six months younger than me died in her sleep. Her autopsy report was heart disease. This was a much needed wake up call for me. When I went to the surgeon I was very honest in how I was feeling. As we get older we tend to think that we are just slowing down because of our age. I am now four and half months out from surgery and now have energy. My chest no longer feels full and I can cross my legs without them falling asleep. My heart feels like it is now beating normal. I thought that my sinuses were causing light headiness and making me wake up at night because I could not breathe. My nose still does not work and I can now breathe at night and no more light headiness. LISTEN to your body. Also thank you to someone that posted that his doctor told them that they would know when it was time for surgery.

 

[bradvo]

Rebecca, same with me, I was tired all the time. Now if I have a bad night sleep or a cold like I currently have I still have more energy then before the operation.

 

[Gary Miller]

What a day! I went for a left and right cath instead of the stress test they had scheduled because the the stress lab doc looked at my last echo and said he needs a cath instead. My cardio has been gone so I didn't get to see the last echo results. Anyway the AVA went from 1.2 cm in FEB 11 to .4 today Mar 02 12. Good news is its a straight valve replace no cad just mild aortic root dia. I talk to the surgeon wed next week. Things are moving fast now. I wanted to get this so its the becareful what you wish time. Funny I mowed the lawn yesterday (we have an acre and a hand mower) and I wasn't that tired but glad to get it done. Thanks everyone this has been the best info I have ever found!

 

[escargome]

Good Luck to you Gary. I can say that you will feel soooo much better once this is taken care of. Please keep us updated on your progress toward surgery and after surgery also.

 

[Greg~]

Gary
I'm glad you're finally getting proper attention and it sounds like this we be fixed very soon. Please keep us up-to-date on the schedule - we're all pulling for you!!

 

[Bill B]

Anyway the AVA went from 1.2 cm in FEB 11 to .4 today.

I would have VERY strong doubts about that "change" over one month. The previous one you quoted was 1.0 cm^2. 0.4 cm^2 is not compatible with life, so I think that is an error. No one would be mowing an acre of lawn with a hand mower with a valve opening smaller than a pencil lead. You know, this number is not directly measured, like measuring the diameter of a circle to get its area. Rather, it is calculated indirectly from flow rates.

I'm 100% for early intervention. You have symptoms, which usually is enough for most cardiologists. However, all your previous echos show minimal changes. You have had moderate/borderline severe stenosis at 1.2 or 1.0 cm^2, and not much change in you left ventricle. Was there anything else in the cath that was alarming? To me, it's not clear your symptoms are valve-related. I don't know what they are from, but I suspect your cardiologist is wondering the same thing. You appear to have no CAD, which is very good news.

Anyway, if the 0.4 cm^2 is real, you needed surgery yesterday, before you mowed the lawn! I hope all this gets straightened out.

 

[Gary Miller]

I talked to a surgeon Monday the hospital nurses said he had good hands. My cardiologist recommended one of the other guys in the surgeons group ( I will most certainly talk to him too). He was ok said he had no problem putting in whatever I choose after viewing the cd. Said he could probably put in a 23mm Mech. His resume is not stellar, University of Miami Med School, surgeon 23 years, 34 articles published on CABG, Heart Meds, and Florida Surgical review Board. Now I’m back to choice of valve. I have all ways thought the ON-X would be the way to go. But you keep reading the Coumadin websites and it’s so darn restrictive on lifestyle if you don’t ever stabilize your dosage well. There are no guarantees when the clinical trial is over in 2015 that ON-X recipients will be allowed to go to Plvax and aspirin. Does anyone have the latest word on Cleveland’s reasons for leaning towards tissue valves for early 60’s folks.

 

[Lynlw]

I talked to a surgeon Monday the hospital nurses said he had good hands. My cardiologist recommended one of the other guys in the surgeons group ( I will most certainly talk to him too). He was ok said he had no problem putting in whatever I choose after viewing the cd. Said he could probably put in a 23mm Mech. His resume is not stellar, University of Miami Med School, surgeon 23 years, 34 articles published on CABG, Heart Meds, and Florida Surgical review Board. Now I’m back to choice of valve. I have all ways thought the ON-X would be the way to go. But you keep reading the Coumadin websites and it’s so darn restrictive on lifestyle if you don’t ever stabilize your dosage well. There are no guarantees when the clinical trial is over in 2015 that ON-X recipients will be allowed to go to Plvax and aspirin. Does anyone have the latest word on Cleveland’s reasons for leaning towards tissue valves for early 60’s folks.

FWIW, most centers, reccomend tissue for patients in their 60s and up and have for the last decade or so, for a couple reasons. The chances of outliving the tissue valve were pretty low ( usualy dieing from old age or something not related to the valve) and IF you did outlive the valve and need a REDO, the stats for first time REDOs are about the same as first surgeries, so since the people that have the most complications with coumadin tend to be the elderly (65 and up) the benefit/ risks is usually bettter with tissue in that ag group.

Now CCF pretty much lowerred that to tissues for most people in there 50s and high 40s, unless of course the person prefers a mechanical valve, beside the other reasons, the fact the newer tissue valves generally are lasting even longer than earlier ones (close to 85% of patients in theire 60s tisue valve was still going strong 20 years later in a couple studies) and beside the great stats for REDOs, the possibility of avoiding OHS IF you outlive the tissue valve you get now (in 2012) and have the tissue valve replaced by cath looks very promissing. Since percutaneous Aortic valve replacements already are approved for the higher risk patients.

Now saying all of that many many people have no problems taking Coumadin and would still prefer that over the chance they would need another OHS down the road.

 

[Gary Miller]

Sorry about the mixup Bill. It was only a few hours after the cath that I posted the results. It wasn't .4 AVA it was AV Max 4.52m/s that is still a big concern(should havwe been replaced at 4.0)! Again I'm struggling with valve choice as the surgeon doesn't reccomended either way. I think someone mentioned that the ON-x isn't really that much better that the SJM except in the Hemodynamics and hinge system from what I can gather, and the tissue valves now being advertised at 15-20 years is not going to show the clinical results for some time. I'm leaning toward a Mech and Coumidin as it might not be as scary as I think hope.I noticed on another thread that some people are taking issue with Cheney getting a new heart at 71 and as health care changes in the years to come will any major surgery be considered for anyone in their 70's due to costs and expected longevity . I know someone mentioned that you can't live forever but when you are very healthy except for this problem its hard to look at just 10 years or so before you might start gettinbg back in the same problem. CT scan Fri, pick valve type and OHS schedule on the 9th.

 

[escargome]

Gary,
I will keep you in my thoughts come the 9th. Just do what you feel in your own gut is right. Either valve type is gonna buy you a new lease on life. The only wrong thing would be to do nothing. Best wishes to you.