what to do!

[JBriau]

It's been a while since I posted. Just to refresh you.
I had endocarditis in sept 99. had my mitral valve replaced.
Six months later told aortic valve leaking. Last 3 years it
has been severe leak. My heart is not enlarged and I keep
passing my stress tests. But I am so tired by the time i get home
from work i dont feel like doing anything and have gained 30 pounds this last year. They don't want to do the surgery until they have to. I don't know what to do. What do you think I should do?
Should have it done and get it over with or should I wait for more symtoms to appear. I have been on medication to keep symptons at bay for three years. Looking for advise. please help.

Thanks Judy

 

[bethanne]

Hi Judy,
I can empthasize with you. I also have an bi-cuspid aortic valve and have been struggling with increasing fatigue for the past 4-5 years. After much promting from members from this site I actually asked for copies of my reports and have taken the time to understand what they say. I just posted my mosted recent appt on a thread... "appt with cardio today".

What I have learned here is how important it is to pay attention to your symptoms then pursue with your doctor. If you do not feel that they are listening then consider a second opinion. Also if you look through the site you will see that several have utilized the second opinion opportunity that is available thru the cleveland clinic. Others will post as well and they can provide the link if you do not run across it from other posts.

If this helps, yes I have a bi-cuspid aortic valve with moderate/severe regurgitation. I have struggled with fatigue and weight gain. I have also explored other options to rule out other causes for my symptom all have led me back to the leaky valve. Yesterday my cardio agreed that it was time to begin the process for valve replacement. Looking back I wish I would have been more aggressive to fighting the weight gain as I know that is just one more hurdle to cross during recovery. I am also determined to be as active as I can even if it is walking at slower pace. I want to keep my muscles, heart etc. as healthy as possible to assist in the recovery process.

Glad you are here. I am sure others with more experience will come along soon.

 

[ALCapshaw2]

" They don't want to do surgery until they have to "

Sounds like a statement right from a Cardiology Text Book.

I've noticed that MANY Cardiologists have this philosophy.

(Tell me if my guess that this came from a Cardiologist is wrong)

I think it's time to get a SURGICAL opinion (from a SURGEON).

They tend to like to operate before the heart suffers more (or permanent) damage.

'AL'

 

[alan_delac]

Hi,

This is my first post. I have (or had) the opposite problem. At a recent checkup (after a long period) my cardiologist wanted to operate and replace my aortic valve, but I don't think it was time.
I'm 43 years old, I have bicuspid aortic valve with moderate-severe regurgitation. However, I don't have any significant symptoms, I'm very thin and size of my hart has been stable for at least last 10 years. After doing some research on Internet I've decided to change my doctor. I explained my position to the second doctor (cardiac surgeon) and he agreed that my opinion is reasonable. We decided to conduct Eco-cardiogram every 6 months and monitor how my heart is coping.
I believe that ultimately we, as patients, should take decision when to do the valve replacement (within reason of course). If you are convinced that the operation would improve your life I think you should insist on operation.
We have to live with consequences of our decisions.

Alan

 

[bethanne]

hi alan,
You are right. It is important to be realistic about your symptoms and find a doctor that you fill listens to you.

I am curious, since you mentioned you were not symptomatic at this time, if you are a physically active person. Not to long ago there was a discussion regarding the benefits of those who have a congenital bi-cuspid valve and did not know about it until recently and as a result have been alot more active thus less symptomatic. Whereas some learned at a young age they had a condition that should be guarded growing up and their inactivity has played a role in their status now.

My first cardiologist had me terrified to go up the stairs (7yrs ago) after several panic attacks to the emergency room my pcp suggested I change cardio. My current doctor has encouraged me to be more active and I think that has been beneficial overall.

just curious...

 

[alan_delac]

Sorry to be so slow to respond.
I found out about my valve at 18. I was never an active sports person but did everything people around me were doing including playing social volleyball, swimming, snorkelling and skiing. Since I?ve learned about my condition I am more careful not to push myself too hard. Recently I tried surfing in not so good conditions and after about half an hour of battling waves I concluded that my heart is beating too fast and I gave up. My wife and my son (8 years old) found the conditions too hard as well. I must say that I feel better when I am physically active during summer when I swim at least once a week. During winter when I?m less active and in particular when I?m under stress at work I get some funny heart symptoms like a faster heart beat after a morning shower. To conclude, moderate physical activity makes me feel much better. I don?t think I would be any better off if I stayed in bed all the time.

Alan

 

[MarkU]

They first found my bicuspid valve when I was 5. My doctors never restricted my activities and I was active in all kinds of sports while growing up. In fact, I remember having to miss a day of high school football practice when I had a catherization at 15.
I never had any symptoms when I was young - don't know if it was because I was active, or just luck.
When I did start to experience excessive fatigue in my mid 40's, I at first attributed it to being out of shape or work-related stress. I found that I did feel a bit better if I pushed myself to exercise hard.
My symptoms (chronic fatigue & SOB) eventually overcame me to the point where my quality of life was suffering. I could struggle through the day at work and then come home and just crash - I had absolutely no energy at all. The final straw was not being able to sleep laying down because I couldn't breathe.
When I finally had my AVR the surgeon said that my valve was extremely calcified - one of the worst he had ever seen - and that my symptoms should have been much worse than they had been. They also found that I had developed some left ventricular hypertrophy - possibly from continuing to exercise so vigorously when my valve was deteriorating. (Fortunately most of the enlargement reversed in the first 1-1/2 years after my AVR)
I think that being in good shape probably delayed the onset of my symptoms, but toward the end too much strenuous exercise probably worked against me by pushing my weakened heart too much.
Mark

 

[BillCobit]

Timing of surgery

Timing of surgery

Hi Judy -

Check out the info I posted for David Watts

http://www.valvereplacement.com/forums/showthread.php?threadid=6509

It includes some info on considerations for timing of AVR surgery w/o symptoms. (and links to excellent reference sources)

If all of the classic symptoms and clinical observations don't line up the way the text book describes, you'll have doctors that disagree on timing. In my case, I had enlarged heart and low ejection fraction, but could do typical daily activities w/o symptoms (atypical activities were a different story.) There was wild disagreement between doctors about prognosis, disease progression, need for surgery, etc. I did a lot of my own study, decided for myself it was time for surgery, and finally sought out a good surgeon who agreed with me.

These are tough calls to make. I think the best you can do is learn as much as possible, question your doctors (they love that!), and make the decision you think is right for you.

Good luck!

 

[medtronic of borg]

Chiming in

Chiming in

I feel I must chime in on this one. You have some very fine Drs up there and I can't help but feel we need to offer them a little trust. After all how many years have you studied medicine? Would you like it if while at work someone stopped in off the street and told you how to do your job? There is a place for second opinions . Like when you are strongly feeling communications have broken down.

Med

 

[atydev]

I am feeling your pain

I am feeling your pain

I am going thru the exact thing right now. I got endo in June of 03 I was to have my mirtal and aortic valve replaced in Jan. of 04 no such luck was told to wait as long as possible. Now, since Jan 21st to March 3rd my aortic valve is leaking in a 2nd place. I knew I was getting more tired and my days are a struggle. I have gained about 34 pounds since June of 03 and do not want to gain not one pound more. Although I have no energy to get up and lose the 34 I have already gained and hehehe.....diet pills are forever out of our options... I guess it will be veggies and fish forever...not such a bad thing except I would miss my pasta and potatoes. I just don't understand why they make us wait so long. I am ready to get up and live again. I have not worked in 9 months and fill that by the time this is all over I may have become to lazy to ever want to go to work again at this rate. I have 2 kids at home and can't wait to be normal again. I wish you all the luck and pray your situation will get better very soon. Good luck

April

 

[JBriau]

Thanks everyone for your inputs to my situation. I see my
cardiologist again on the 18th of this month. I have another stress test that day also.
In a way I hope he says its time. I already have one
mechanical valve. I felt so good after I had it done. I just
want my energy back.

I'll wait and see what he thinks.

Thanks everyone!!

Judy

 

[KathyH]

I think it is a good idea to get a cardiac surgeon opinion. My cardiologist told me my valve was ok despite the mod- severe reguritation and despite a 4.7 asending aneurysm. She told me "With the risk of the surgery no one will touch you until your aneurysm is 5.5-6 cm." I decided to become proactive in my health. I went to Boston and saw a surgeon and he recommended surgery within 3 months!
An FYI for your bicuspid aortic valvers- aortic aneursyms are common in people with aortic valves. You may want to ask for a CT scan to be sure you don't have one.
I don't have any disrespect for my doctors, as everyone has their own opinions on things and it depends on the area you live it what guidlines they follow. I had decided that when the time came for surgery I wanted to to to Boston for the surgery as they have 3 top rated hospitals in the country. I figured it would be best to get their ideas so I wouldn't have the heart damage and so I wouldn't die of an aortic dissection. I am thankful I found this forum, not only for all the support I get, but also for all the information that the members can give you.
Kathy H

 

[Abbanabba]

You have some very fine Drs up there and I can't help but feel we need to offer them a little trust. After all how many years have you studied medicine? Would you like it if while at work someone stopped in off the street and told you how to do your job?

Hi Med,

I appreciate your point on doctors and how long they train in their field, but honestly, my faith has long been destroyed because it seems that so many them are too busy to thoroughly investigate situations and look for a "quick fix". Sure, they might have studied medicine for 7-10 years, but I've been living in my body for 30+ and know when things aren't right.

Up until 2 years ago, I was a very fit, healthy and active person. I didn't allow my heart condition to interfere with anything I wanted to do, but once I started getting symptomatic it seems things started taking a very steady decline. Like so many of us here, I put it down to working too many hours, not getting extra exercise (..although because I don't drive, I have no choice but to walk everywhere anyway..), not enough sleep, yada yada yada.

I had every test under the sun (..which all showed me to be in "excellent" health - despite the fact I could no longer walk to my mailbox without needing a rest..) and was told by a GP I should expect to start slowing down at my age. Bear in mind I had only just turned 30, didn't smoke, didn't drink in excess, got regular daily exercise, wasn't overweight, and ate a very healthy diet.

I go to the cardio and he tells me I need a valve replacement soon, now he tells me I don't! All of a sudden he is changing his diagnosis to anxiety and depression.

Unfortunately my story is not an uncommon one. It is no wonder that people are starting to lose faith in their doctors. I guess the biggest problem is most doctors don't have a thorough understanding of ALL medical problems and specialists, in particular, are only focussed on their particular field and don't neccessarily know to look out for other things. It's kind of like going to a carpenter when, in fact, you need to see an electrician. They both work on houses, but their field of expertise is very different.

If not for the advice and experiences of the everyday person on this, and other sites, I might well think I was going mad. Now I have a new direction to follow and hopefully this will find the answers I so desperately seek.

Cheers
Anna : )