Has anyone ever been told.............

[fdegranville]

that replacing the valve may not make you feel better?

I saw my cardiologist for the first time after an unsuccessful valvuloplasty last April. I am exhausted and at the point that I am struggling to do my job and forget anything other than that. My mitral valve was at 1 cm2 prior to the procedure and they were only able to open it to 1.2 and the mitral valve went to 2+ MR along with existing 3+AI. My doctor told me today that she thought that if they replaced the valve the largest they could put in would be 2cm2 normal is 4-6), because I'm not that big. and she thought that it might not make much difference. So does that mean if the mitral stenosis was worse and they replaced it that it still wouldn't make any difference in the way I felt. This is very depressing--I need to get worse and feel worse to have the surgery and I still won't feel better. I've never heard anything like this in the hundreds if not thousands of posts I've read on this site.

She did say that it might be that the pressures in my heart go way up when I exert myself which could produce my symptoms, so I'm going for an exercise echo (hate those things).

I would appreciate hearing your thoughts on this.
Thanks,
fdeg

 

[Ross]

Awe Fred , what am I going to do with you?

I've never heard anything like that myself, but I can say that after replacing mine, (Remember, I had many complications) I do not feel better and I am worse. My heart is fine now, but my lungs took more punishment then they were ready to accept. I sort of traded one thing for another. Perhaps someone else can share what they've heard or know.

 

[ALCapshaw2]

Hello Francesca,

It sounds like you may need to go for a second (and third?) opinion. Be sure to include a SURGEON in your quest.

I remember hearing that if the replacement valve area is not much bigger than what you currently have, that there will likely be little surgical benefit. Remember though, that echo cardiograms don't always give the WHOLE story.

Bottom Line: They won't know for SURE until they open you up.

"Heart Disease isn't for Sissies!"

Here's hoping you are able to get some more information.

'AL'

 

[LUVMyBirman]

Hi Francesca our old friend!

So sorry to hear you are not feeling well.

When it comes to healthcare. NEVER take no for an answer. You need a second opinion. Have never heard of such a thing. I could see if you had already had surgery with complications this could be an issue.

Have learned that we will never be perfect. One cure can cause other issues. In my case I did not feel sick before my surgery. Now I have my days...but I am able to lead a very active life including exercise.

Valve replacement in most cases is just for that reason. To increase your vitality. If you don't try...you will never know. They could be very very wrong in suggesting it will not work out for you. Did they present the stats on waiting until it's urgent? Seems that could be more of an issue.


Nice to see you again. Please take care and keep us posted.

 

[fdegranville]

did anyone ever tell you........

did anyone ever tell you........

Hey Ross, ..........I don't know what I'm going to do with me, either- LOL.
I guess I was just surprised to hear that. I did not realize that your lung problems were a result of your heart disease. I thought they were separate issues in your case. I know with mitral stenosis if you wait too long it causes PH, is that what you have?

Hi Al,
I think if I pushed the issue she would send me to surgery, but she is not altogether convinced I need it or as she said, it would do any good. She also said that if my activity level was lower that would help too. I have a fantastic job that I love (and need) and was recently promoted to an exective position, I HAVE to be able to do this job which includes a lot of travel. Anyway, I'll wait until after the echo and see what she says. It has been 9 months since I've had one; maybe it will show things have changed. Do most doctors go strictly by the numbers?

Hi Gina,
Thanks for the nice note. I have always been told that replacing the valves is really exchanging one set of problems for another. But reading the outcomes of the hundreds of people on this site alone proves that quality of life is improved dramatically in most cases---IF it is done in time. Over the last year the numbers on my echo have changed; the LA went way up in size (one of the major problems during the valvuloplasty), the LV went up too and the cath showed a slight reduction in contractility. I have had bouts of Afib wihich was why they put me on Coumadin. One of my former drs told me that once a patient with mitral stenosis goes into Afib permanently they become a whole different species(sic) of patient, very ,very ill. So I definitely want to avoid that. I went to this doctor because she is part of a group that only treats valve disease patients (New York Presbyterian Hospital). I'm sure within her practice she sees much worse cases, so she wants to be cautious? Maybe after the stress echo if she is still reluctant I will do as Al suggests and get a second opinion. But for now I still love our waiting room!

Francesca - aka Fred

 

[ALCapshaw2]

Hello again Francesca,

Well, if it's been 9 months since your last echo, that would be a good place to start, or the more definitive TEE (TransEsophageal Echo) where they put an ultrasonic transducer down your throat right next to your heart to get higher resolution images.

I still think it would be worthwhile getting an opinion from a Heart Surgeon. They often have a different perspective than Cardiologists.

'AL'

 

[Nancy]

I second and third what everyone else has said.

1.) Your cardiologist is not YOU. If you are feeling so badly that you cannot concentrate anymore, then you have to possibly get a second opinion and have a frank talk with a surgeon after having the necessary testing which will show the condition of your valve in as much detail as they can get.

2.) This is one of the times when you will have to be very firm in getting the help that you need.

3.) Someone will have to determine what the risks are in keeping things the way they are at the present time. Would getting the valve replaced keep things from deteriorating and thus save your life, even if the replacement would not return you to apple pie order?

4.) Don't let this thing slide without a darned good fight. Sometimes in life you just have to be extremely pushy. I feel this is one of those times.

5.) It's your life, not someone else's. Always remember that. Only you can determine how much nastiness you are willing to put up with.

 

[Ross]

Hi Francesca

My lung disease is a separate issue from my heart, but when I had surgery to replace the valve, the surgeon took some blebs (tumor like tissue in appearance) off of my lung which caused it to collapse shortly after surgery. I have significant scar tissue and lots of non functioning alveolar air sacs. This whole episode kind of put the icing on the cake so to speak. I'm on oxygen 24/7 now and a whole lot more breathless with the least amount of exertion. My saturation levels fall like a rock just as soon as I start walking.

 

[ALCapshaw2]

Francesca,

After rereading your original post, one number is conspicuous by it's absense, namely your EF (Ejection Fraction) which indicates the amount of blood that is pumped from your Left Ventricle (LV) on each heartbeat, expressed as a percentage. A below normal EF can cause a LOT of symptoms, especially ones related to decreased capabilities on exertion. Normal healthy hearts fall in the range of 55 to 75 % if I remember correctly.

'AL'

 

[Marge]

Everybody's situation is different, I suppose, and I don't have stenosis, I have mitral valve regurgitation. I really do not necessarily expect to feel all that much "better" after my surgery. I know, however, that if I don't have the surgery I will feel worse. Very probably a good deal worse.

My mitral regurgitation is in the 3+ range and I've got "moderate to severe" systolic dysfunction of the left ventricle. I have an ejection fraction which has been variously given at 29 % (per cath in November) and 30-35 % (per echo in October). So my heart muscle has already been substantially damaged and I do not expect the mitral valve repair (or replacement) to reverse that damage. My cardio, after I pushed him on this, finally admitted that reversal from the surgery is "unlikely."

So what is the surgery going to do for me, then? Well, it's going to stop one very important source of further damage for the future. My poor old left ventricle won't have to keep working so hard just to counteract the inability of the valve to operate properly. My cardio says that, as far as he can tell, at the present time the only thing that is causing ONGOING damage is the valve. So if that is repaired, at the worst, I should be able to continue as I am now.

If it is not repaired, the LV will continue to suffer damage from the regurgitation and the EF may decline even further. My surgeon says he does not want to wait until my EF goes below 30 %. The worse your EF gets and the more damage your LV is, the worse your risks are in the surgery. I know that my risk is already higher because of the LV damage than it would be otherwise.

It is possible of course, that my EF will go up from the effects of the medication (coreg) which I am on. Without the added burden of dealing with the regurgitation, the LV will have leeway to respond to the medication. My cardio seems quite optimistic about that and is fully supportive of my decision to have the surgery.

I will not, however, be too downcast if it does not go up, or not by very much. Even at 30 % (or whatever it is) I am actually quite comfortable right now and can lead a pretty active life including travel. I was mostly asymptomatic at diagnosis. But I sure don't want to get worse.

My situation is an object lesson reiterating what has been said by many here: have the surgery BEFORE your heart incurs serious damage, if at all possible.

 

[LUVMyBirman]

Hi Marge,

Was walking around with 4+ reguirg myself...and did not feel bad at all I thought. Funny how the effects vary per person.

Not sure where my EF was prior to surgery. Based on my last echo and current.....my EF is actually increasing since starting an exercise program. There is no way to tell 100% how your body is going to respond after surgery. You may be surprised in that it could be positive.

 

[Kenny F]

My cardio told me I shouldn't expect much improvement. I think he was hedging... my surgeon expected me to get better.

I can definitely tell a difference, especially in rehab working out, and climbing stairs and hills.

I think it comes down to how advanced the disease is, and I suppose the collateral damage to the heart itself.

Logic would proclaim that more valve opening (mine was described as having "a slit-like opening" by the surgeon) would allow more blood flow. But I'm no doctor...

 

[Marge]

<< my EF is actually increasing since starting an exercise program. >>

Yay, Gina!!!

I should have said: my cardio says that the EF should go up based on the combination of Coreg AND exercise. And with the regurgitation (hopefully) stopped by the surgery: who knows?

 

[Rain]

Be careful not to wait to long.

Be careful not to wait to long.

Francesca,

I?m so sorry to hear of your problems. I like Al?s idea of getting a second opinion from a surgeon. That?s what I?m going to do with Ryan.

My PCP was seeing the numbers indicating I needed surgery, but she seen that I was still getting my daily activities done and assumed I should wait. She would ask me if I was still water skiing, carrying in groceries.. stuff like that... I kept telling her ?yes? because I was. But it wasn?t always easy!! I had no idea at the time, that she was totally basing her decision on my answers to physical activity. I started out with only short bouts of a-fib too... then it became chronic. And my heart is forever enlarged ... because the surgery wasn?t done sooner. Actually I developed ?global? problems with my heart because of not having the surgery sooner. I don?t want to freak you out... I just want you to know. I don't want it to happen to you!!

I don?t understand why she would say that about the surgery? The surgery should have your heart beating more efficiently ... surely you would feel an overall improvement in your health. Second opinion, girlfriend, you need a second opinion.

Best wishes!!

 

[Nancy]

From Rain's post--

"She would ask me if I was still water skiing, carrying in groceries.. stuff like that... I kept telling her ?yes? because I was. But it wasn?t always easy!! I had no idea at the time, that she was totally basing her decision on my answers to physical activity."

I think if I hear one more cardiologist ask Joe how many pillows he sleeps on, I will scream. Is that the way to diagnose CHF or other heart problems??? Maybe it means CHF and maybe it doesn't. People who sleep on their sides use more than one pillow. I sleep on two, does that mean that I have Stage II CHF? Well, I don't. There are scientific ways to diagnose these things. Sometimes people can be so lazy. Sure it takes a little effort to write an order for a test, but wouldn't that make much more sense?

IMHO, that's how many diagnostic errors are made, and the course of treatment is based on assuming, and we all know what that's all about.

 

[fdegranville]

what to do?

what to do?

Thank you all for your thoughtful responses!

I agree with everything...........I really thought I had a good working knowledge of the disease process? Nancy, your point number 3 is exactly what I thought, do it before you get to the point of no return. It is not going to get better.

Al I had a TEE in April as well and it showed that the valve was worse than they thought based on the TTE. My EF was between 55-58% so that's not bad, but when a lot of it is going backwards 3+ AI, then the numbers are misleading.

Ross, no one can forget the ordeal you went through for months. Are you a candidate for a lung transplant?

Rain, thanks so much. I remember your story well. I also talked about how difficult it is to get through a day and how my work is beginning to suffer. I guess because they hear these things from their patients all day long, they are numb to it and hear it over and over, it's like playing a record repeatedly, you hear the words but they don't register.

Marge I wish you the best with your surgery and I do hope it will help. From everyone's testimony sounds like your odds are good.


Thanks again,
fdeg

 

[Bryan B]

Nancy,

I just got asked the "pillow question" a couple of weeks ago. They didn't ask me how thick they were though...lol. I sleep on 2 skinny pillows at home, but when I'm traveling if the hotel has thick pillows I sleep on one pillow. Yeah, that question is silly IMO.

zzz

 

[Harpoon]

Nothing is a sure thing I guess... Maybe that's what the cardiologist was trying to say.

I think of the surgery is successful, and complications don't develope, or are dealt with effectively if they do come up, then you should definitely feel at least a little better unless there's some other kind of problem that's nto related to your heart condition...

It might take time, it might take some effort in a rehab clinic or whatever, maybe changes in diet and exercise or other lifestyle choices, but the whole point of replacing a valve is to make you feel better and live longer, right?

I mean, a doctor WON'T undertake a risky proceedure if there's no real benefit to be expected, or at least possible.


Second opinions are nice, a surgeon's opinion is good too. In my experience, the surgeon had a bigger "grasp" of what my condition was doing to me and how to treat it than my cardiologist did. I've never held anything against my cardiologist, I love him very much (yeah, I'm getting a little mushy) but he knew his limitations and directed me to someone who was more capable of handling my case and I have a LOT of respect for that in him.

Surgeons deal with "bad" cases all the time, surgery isn't a first line of defense in heart desease and most surgeons see pretty sick people. Their job isn't just to cut and paste heart valves or blood vessels or whatever, they have to make sure the patient RECOVERS from what's been done AND gets BETTER. If that's not happening, something's still wrong and it better get fixed.

That's what my docs did in Cleveland. They fixed the initial problems, a bad valve and a baffle leak, and I didn't improve like they expected. They started digging around for other problems and fixed them one by one until, finally, I was recovering and eventually got released. They do this all the time and they've seen just about everything. They've also had their fair share of failures and they learn from those as well.

Seek out a second opinion, and ask WHY you shouldn't expect to feel better after surgery.

 

[SHerrin Hutt]

Heart Talk

Heart Talk

HI Fred,
I was supposed to have valve repair back in 1/99. But twosurgeons in my home town disagreed on rather ther repair would inprove my quailty of life so they decided against it. Whatprobably save my life because they were not known for doing repairs after many cariologist and echo's and tee's they decided to send me to cleveland clinic. My heart was such bad shape I needed the three yrs between surgergys for my heart to get stronger. The replacement was a walk in the park compared to the repair. I was told that the repair would last 10 yrs. Wrong!!!! I had problem from the beginning , when i was in rehab. they find out my injection faraction was only up to 35% after surgery. So I was put on O'2 for for the next 3 yrs while my heart healed. I was working on going back to CCC in the fall of 01. But in 1/99 the bad valve threw a clot and I had a stroke. I had to wait three months for my brain to heal before the replacement surgery. I felt like a new person after the second surgery. No more oxygen anymore. Everyone medical problems are different but we hope th out comes are good.
So good luck with what ever you decide. Just remember it is yours to make.Just learn as much as you can about what is going on with your body.

Good Luck again

Sherrin Hutt
Valve repair 5/99
Valve replacement 3/02

 

[fisher6476]

Hi Fred,
For what it's worth... I know I was lucky becuase neither my PCP, cardiologist or surgeon left any doubt in my mind that I needed to replace my aortic valve in the "NOW" timeframe. Part of the symptoms I told my PCP about were occasional intense pains that started in my stomach then spread to my lower back. This ALWAYS happened at night, would last 4 to 6 hours, sometimes ended with vomiting and was unaffected by any over the counter antacid or anti gas medicine, and the pain was NOT helped my some narcotic pain reliever I had. I also told my PCP about my other symptoms and he immediately thought of potetial heart trouble. I asked him what heart trouble would have to do with my stomach problems and his reply was, "when the body isn't getting the proper blood supply ALL the organs can be affected.
I second what Kenny F. said in that we are not doctors but logic says that other problems notwithstanding, improved blood flow should have a positive effect on how one feels overall. I don't remember when I did my little bit of research if this applied to all valve situations, but as far as an aortic valve that was bad one of the symptoms was sudden death. I didn't like that possibilty.
At worst I agree with Marge who says that even if she does not get "better" either in the way she feels or for the damage to her heart muscle to regress she does STOP the ongoing CHF, improving the quality and quantity of life.