back from the DOKTORS

[mamsram]

well, theres bad news tonite, as Gabrial heater used to say.
Had a physical and 4th echo. The good news cholesterol is at 170, hdls very high, trygl. very low, psa is 2, systolic still a little high.
The echo however, mixed bag. REPORT-- normal lv size with 65% ej.fr.--
unable to actually discern valve opening,-- valve area calculates between 0.6 and 0.7 (?? how did they get that if they cant discern?)-- the valve is probably bicuspid. ( probably?)--peak gradient between 90 to 95 mmHg, mean gradient between 55 and 60 mmHg.---mitral, mild regurg--tricuspid, mild regurg pulmonic, normal--pericardium, normal --aorta, normal.

normal lv function with lvh

well, will I need on op soon?? cant wait 10 more years??
was told to report back in 3 mnths.
GUess I should be doing some heavy thinking.

When I questioned about a local heart place mentioned by physician ( New England Heart Center at catholic medical center) was told no private rooms, no place for the wife??? there are 3 surgeons who do nothing but heart surgery.
enough, I say, I need a break, any comments welcomed
adios amigos

 

[Ross]

With what you've given, an operation seems unlikely unless things deteriorate rapidly. There not going to operate with "mild" anything and your EF is great. I don't think I'd lose any sleep for at least 3 months and after rechecking.

 

[LUVMyBirman]

I would'nt worry about it too much. Honeslty, you could return tomorrow and have a different result. Has happened to me twice already. My cardiolist informed it is the way they measure from left to right, up, down,etc. Which there is no set guideline. Also intrepretation.

On my recent echo the "think" my EF is down in the 50's "think" being the key word. All of a sudden....so he is not convinced given I am feeling great and my other functions are not comprimised in the least. So....confirm, I will have a Muga scan to rule it out. If that comes back higher (better). Echo repeated and they will average it out. Scary that they can't do better with this type of dianositc. Afterall, it's only our heart! Geeze

Ask for a explanation and a repeat.

 

[epstns]

I think I'll keep watching this situation unfold, as I expect I am just a few years behind ram on the same road.

Any symptoms? My cardio doesn't seem at all worried until I begin to show symptoms, although he does say "Come on back and see us in 3 months."

Based on stats, do they consider your stenosis severe? (From what I've read, valve area and gradient point to that.) If so, at what point do they say they would recommend replacement even if asymptomatic? (Guess I'm just thinking ahead to my own situation. . . )

 

[EVELYN]

Hi Mams

We're very inclined to agree with the Rossman. Your ejection fraction is excellent......go with what your cardio says, watch it and go back in 3 months. If you have any different signs, ie swelling in ankles, hands, shortness of breath, inability to sleep, difficulty breathing, tiredness upon exertion, and a myriad of other symptoms, then I would call your cardio. If not, go with the flow, my friend, and enjoy your presurgical existence.......While we always knew it "MAY" happen, we never really had it in the forefront of our minds until Tyce had the afib---then it was ALL we thought about (and you can ask Ross, if you don't believe me!!)

Relax, have that glass of wine and kiss your wife and kids....

Evelyn

 

[Johnny Stephens]

They extrapolate the "effective" area of the valve opening from the velocity of the blood flowing through it. Higher velocities mean a smaller opening. This was exactly what they ran into with me. I actually have a copy of my pre-op echo and you really can't tell very well where the aortic valve actually opens.

Here's a link to lots of formulae used in echocardiography:
http://www2.umdnj.edu/~shindler/eq2.html#basicm

Looks to me like you are indeed in the watch for symptoms and recheck often mode.

 

[wlaldridge]

You are in the area that I got to and had surgery. They don't always "see" the bicuspid valve but it is a good bet that that is what lead to the stenosis.

The calculated opening and pressure are in the "severe" and you don't want to get to the point of damaging the heart from excessive work.

Your ef is great because you have a strong heart, but it will start to thicken the wall of the left ventricle as it pumps at those pressures. The thickening wall is what leads to the mode of failure when the left ventricle simply dilates and quits pumping. Sudden death can occure from over exertion at this point.

I NEVER had symptoms. Please be very careful to be aware of any of the "classic" symptoms of heart trouble "shortness of breath", "pain or pressure in the chest" and "fainting or lightheadedness". There are technical terms like syncope for all of these but it is more important to recognize them than name them.

My bet is that it is a short time till you will be going up our mountain. The waiting is worse than the event. But is is a "big deal" so I would not want you to think I am treating it lightly.

Not trying to be a wet blanket or downer here but my recent experience made me a believer that it is a fine line the patient and cardiologist walk at this stage of the game. They don't want to wait too long, but there is no value statistically to operate too soon. They like to wait for symptoms, but that depends on the patient perceiving and differentiating what might be very minor events.

My cardiologist gave me less than five years to live without surgical intervention, and told me not to think in terms of one year out, rather a few months. He claimed the noise from my valve was all he needed to be convinced along with the echo. I had the surgery three months later and the surgeon confirmed the heavy calcification of my bicuspid valve.

I wish you the very best as you approach these next few echos and likely a heart catheterization.

Bill

 

[Nancy]

Hi Ram-

It doesn't sound too bad, and you should take some comfort in the fact that your cardiologist is having you wait 3 months. He's going to keep a good eye on your heart. I'm hoping that you don't have many symptoms, but as Bill has said a few times, he never had many or any.

If you do have any weird feelings or shortness of breath, dizziness, funny heartbeats, be sure to call the cardio. ASAP. Those don't necessarily mean that you will need immediate surgery, but that the cardiologist has to be made aware of it. Lots of times there are meds that can help with symptoms.

I'm wishing you all the best, and hoping that surgery is a ways away for you.

 

[terry40]

Mamsram

Mamsram

There are other testing procedures they can do if they suspect replacement/repair is near.

They can do a TEE, and Cath, I was in severe regurgitation for over 8 years, they just monitored my EF % which stayed in the high 50 till just before surgery, and they also looked at the thickening of the heart wall, like was already mention, they don't want it to loose it elasticity.
I was seen for evaluation every 3 to 6 months, if they had any concerns about you needing surgery ASAP they have scheduled you for further testing, or a sooner follow-up appt.

Great chol, & hdl

Terry40

 

[John Cochran]

I am sorry to say that your numbers and situation seem remarkably close to my own one year ago. I had no symptoms, and all numbers looked good EXCEPT for the valve area, which was actuallly a little better than yours. In a six month period, I went from your situation to a rapid dilation of my left ventricle, and an ejection fraction of 20 percent...which is very bad given that a normal EF is 55 to 70 percent.

An aortic valve area in the .7 cm squared is definitely in the severely stenotic range. Have you had a cath yet? They can much better determine velocities that way. At any rate, you are in the "watch closely" zone with your valve area. If I had it to do all over again, I would not have waited as long as I did, because things can happen very quickly. If you have surgery before you get a lot of LV dilation and reduced EF, you will recover much more quickly, and your rehab will be easier as well.

Just my opinion based on my own experience. Good luck with whatever choice you make!

--John

 

[Nancy]

I forgot to add one more thing about EF (ejection fraction). Having a good one doesn't necessarily mean that things are hunky-dorey, as others have said. Joe's EF is 60-65% and here he is in the hospital in some serious difficulty, so be aware of what your body is telling you at all times, and at your next appointment ask about getting further testing, like a TEE.

Wishing you well,

 

[wlaldridge]

John-sounds like you and I have very similar paths to the mountain. I got up there quicker my ef was still 55%. Why, because I had a hard nosed "no nonsense" cardiologist with lots of experience. He made it very clear to me that these valves kill people quickly and unexpectedly.

It is the classic "big one" sometimes with no warning, because the mode of failure is so different from a traditional mycocardial infarct which comes with lots of warning signs. My father died at age 48 on the way to the hospital for heart tests in 1960. They wanted to do a post mortem autopsy, but they were pretty sure it was blocked arteries, so we refused the post. I have a cousin who has had AVR and many men in my family have died of heart attacks. Many, including my dad may just have had the bicuspid valve. Always thought I would be canidate for bypass surgery some day due to this history.

I believe, beyond a shadow of a doubt, I would be a dead man had this guy not been so forceful. I, also, have experience in pumps and piping systems, this made me take seriously the numbers coming out of my echos.

Again, Ram, best of luck and continued good "quality of life"

Bill

 

[mamsram]

hey everyone

Thanks for the responses and the words of wisdom (from those who have been there).
ross, glad you responded, made a change in my mood, instead of angry, I smiled. Guess i was dissapointed in not getting an upbeat discussion from the cardiologist.
John, got it the flow, hey O.K.
steve, all I know is that when first diagnosed with AS, I was at .8 opening, that is -severe, next stage is very severe and I guess thats the end of the line.I dont know where mild and moderate begin and end. as far as asymptomatic goes, when the left ventricle starts to get tired from all the work, the wall thickens and ejection fraction gets lower. When these vital signs start to worsen to the danger zone--you are very rarly asymptomatic.
Gina, yeah GEEZE all right, but what are ya gonna do?
thanks Evelyn--wine and kisses sounds like a nice combo. I,ll definatly keep it in mind.

Nancy your right--ejection fraction isn't the only consideration but its nice to see a + on a report. but have to remember that they are all interelated.

Bill and John thank you, you guys are a couple of " BEEN THERE, DONE THAT" guys with words of experiance - and the sudden changes--scary and makes one believe a little time on the tightrope is too much time.

 

[Granbonny]

Surgery in Atlanta

Surgery in Atlanta

At Saint Joseph's Hospital..with my doctor..ohoooso good looking and his Private nurse..a beauty. You will have a private room. Your wife can stay with you 7-24..And the weather will be beautiful ...And best of all I'll come and walk you myself BonnieP.S. There nurses voted 5 stars..for heart patients.

 

[mamsram]

hi Bonnie,

I'm still on line.
I want a beautiful surgeon. and pretty nurses. of course I would prefer a Plain, caring nurse, rather than pretty _itch.

would you sing while you are walking me, quietly," I want to walk you home" and I'll respond " I want to stop, and thank you, baby" WE'LL have a singing good time.

 

[joy]

Hey mamsram, at my hospital, I had wonderful caring nurses, and an excellent cardiologist, and my hubby could stay with me 24/7. very nice private room, and hey, if I didn't like my dinner, they would make me something else! WEll, take care!
Joy

 

[Don]

Concur with Aldridge and Cochran

Concur with Aldridge and Cochran

Hi "MAMSCRAM",
I concur with John Cochran's and Bill Aldridge's comments. Two days prior to my 4/12/02 AVR Surgery at the Cleveland Clinic Foundation (CCF) my stats were:
Arotic Valve Area = 0.7 cm squared
Peak/Mean Gradients of 79/43 mmHg
EF = 60%
My previous exam of December 2001 showed an AVA of 0.8 cm squared.
My last echo, post AVR surgury, on 10/24/02:
AVA = 1.5 cm squared
Peak/Mean Gradient of 19/9 mmHg
EF = 60%
My CCF cardiologist wanted me to have my surgery about 9 months earlier than I actually did. (I was scared.)
I maintained, and still do, that I was asymptomatic prior to surgery. BUT I can do more now than I could during the 12 month period prior to the surgery. This could have been my mind playing tricks on me, since I've stopped worrying
(or at least substaintly reduced worrying) about "Sudden Death" if I now push myself too hard.
I didn't have a private room and I wished I had, but it probably didn't make any difference to my survival. I had a fairly easy recovery, and have been feeling well. (Walked 5 miles today at 4000 ft altitude in hilly terrain.)
Should I have had my surgery sooner? I don't know. My thinking back then was the longer I wait to get a tissue valve, the longer it will last in terms of when I have my next AVR surgery. Valid?
Probably not.
Best wishes -- and keep us posted,
Don
AVR; 4/02; CCF; Cosgrove; Bovine Tissue

 

[mamsram]

hi all,

After going over my post I have a few more thoughts.

to Terry--When I mentioned a TEE to my cardiologist, he just sort of shook it off, leaving me to believe that in his mind there is enough evidence existing , so further proof is unnecessary.
The cath seems to be seen as the line in the sand, that is, it must be done to do the vr, so if you do that, the vr is next, as if you don't do one without the other. That reminds me, Whats a MUGA?? Yeah 170 is good, maybe no artery resistance to blood flow--Means no symptoms? If you had resistance to blood flow at the valve, and resistance in the arterys, well, more likly to have symptoms, right??

Joy-- You had the ideal hospital accommodations, sound exactly what I want, only a little closer to home. But I'll deal with it, I just need accomadations for my wife, to be by my side. after all she is my "sidekick"..

don-- whats with the peak/mean gradients. do my numbers show better or worse than yours were?
As for sudden death or dying on the table, at this stage of life, I can accept that---we all die-- my big fear is being debillitated, stroke or whatever.
I see that you went to the 2nd best surgeon in the world( excerpt from a showhost post) How does one handle the logistics of doing this far from home, and what about followup, does the cardiologist have to connect with the surgeon after????

Wow, so many questions so lille time! thanks aall

 

[wlaldridge]

Ram,

Right the cath is the final step to surgery. The surgeons seem to like a cath within 30 days of the surgery. They have the best info about the then current condition. I guess about 50% of AVR (adult) also have CABG due to blockages in arteries.

Interestingly, my cardiologist did not attempt to get reading in or around the aortic valve, he said "I know all I need to know about that valve". He is a "good ole boy" and very sure of his knowlege. I guess, I am too, at this point.

Tightrope is a good analogy.

Best wishes

 

[EVELYN]

Hi Mams

When Tyce had his AVR, there was NO TEE....our surgeon felt it wasn't necessary. The cath was it and off we went. My guess is that our surgeon knew everything he needed to know from the echos, hospital records, etc., to know what he was going in for. It was about 2 to 3 weeks from the cath to the surgery.....a very difficult time, I might add.

I think you have to answer one question for yourself.....Do you trust your cardio and his advice? If so, and you're comfortable with him, then you have to trust his advice. As long as you are FEELING well and have no symptoms, you're where you should be right now. Has your cardio suggested a cardiothoracic surgeon or two yet? Ours gave us 3 that he would use and we took it from there. THEY know who is good and who isn't. They also know you and what your needs are. We point blank asked our cardio, "If this were you, who would you use???" From that point on, we checked the three of them out and talked with two.

We, too, asked the same questions about strokes, etc. Our surgeon told us that while they happen, they occur so rarely and the chance of death is between one and two percent that he had no problem operating on my husband. At the time Tyce was 59 and in good health. The same day of his surgery, two other people, one 79, diabetic and one 80something with many health issues were done....all three were fine. The only difference was that my husband was in CCU for a shorter period of time than the other two.

I think when you think of hospital "accommodations," you should go to the very best hospital and surgeon you can find. Ours was about 75 miles away and I drove back and forth every day. Not easy, but I knew he was in great hands. Almost every hospital can recommend a hotel around the area and some have rooms attached. St. Francis, where Tyce was, was VERY strict on visiting hours, others are not.

Trust me when I say, it will all work out. This is the most difficult time for everyone, it seems as though there are so very many decisions to be made and we all feel inadequate in our knowledge. Some times you just have to trust. I hope this has helped.

Evelyn