How did you decide ?

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Scottie

Hi folks ...I have been told that I need an op to cut away thickened muscle beneath the pulmonary valve..( a result of a congential defect )....however my point is ..how do you decide the pros and cons of surgery ...
I feel I have a good quality of life right now ..fatigue and some breathlessness with a tendancy of always having anemia ..but I can still work and although have to rest up at weekends ..I can still do most of the things I really want to ..
I have two teenage children who are heading towards University soon ..I need to work to help pay them through ...I also have a younger child ...
My point is how do you weigh up the risks of surgery and the needs of your dependants ...
I feel I have some good yrs left in me yet and although surgery might extend my life (I'm 41) maybe I should settle for getting my kids through Uni ..
I'm asking the people who's surgery was not an emergency ...how did you decide?
Thanks for listening
Scottie
Ps .am I the only person in here who goes round and round this issue ?
 
Hi Scottie

I understand your dilemma. I was told by the cardiologist that going by the figures I was requiring surgery soon. However at that point I wasn't experiencing any symptoms and my quality of life was good. A few months after this I started to notice that I was getting breathless with exercise and was tired all the time. I was also getting dizzy spells. I think I had the symptoms for a while but you just cope with them and put them down to something else. Basically my condition was going to get worse and they felt that surgery should be carried out a.s.a.p. By this time my quality of life was deteriorating in that I had to give up hillwalking, aerobics and ski-ing as I didn't have the energy. In your case I feel that though you are coping with day to day things as I was your quality of life will be so much better if you have the surgery. Also your condition will no doubt deteriorate also. You're the same age as me and young enough to bounce back quickly after the op. You said before that you need a replacement valve also but that they couldn't do this until they fix your other problem. Would it not therefore be best to try and have the valve replaced at the same time so that a few years down the line you will not need another op? Anyway the decision is yours and yours alone. With the NHS as it is they probably wouldn't recommend surgery if they felt that it could be put off for a few years. Let us know if you come to a decision. Best wishes.
 
Hi Scottie,
I agree with Peachy, I am three weeks post op and I feel really good,I am 47 a little older than you,and to be truthful the surgery was nowhere near as bad as I imagined,
If you could get both problems sorted at the same time it would be better.
you will feel so much better after the surgery, please do not wait too long

Good luck in reaching your decision
Jan
 
Hi Scottie-

It's understandable to not want to have surgery, since you feel OK at this point. Please remember that this is not elective surgery and isn't recommended unles it's absolutely necessary.

Others have mentioned that the heart compensates over time for some of the inadequacies, so your symptoms aren't too bad, but this usually manifests itself with an enlarged heart and other changes with the pressures inside the heart and the pulmonary system. Eventually the system starts to break down because your heart can't compensate any more and you will have symptoms. Your doctor must see some of these changes with testing and wants to nip it in the bud, before it does damage to the heart muscle itself. It would be much to your benefit to have this surgery before too much damage occurs.

You are still young and have many years ahead of you. Why should you be sickly for any of those wonderful years to come.

So please think about this. You have children with bright futures ahead of them. I'm sure you'll want to be around to share those special moments with them. And then there are grandchildren.

So for the sake of a few months recuperation, you'll be much healthier and will be facing some beautiful things in your life.

Best wishes.
 
Hi Scottie.

I decided on an earlier approach rather than later approach is better for me. I feel some symptoms primarily dizziness, that I've attributing to "other" things. A cardiologist suggested sometime this year probably, my surgeon feels anyone who's aperture is smaller than 1.0 is ready. Mine is .65.

I'm thinking that no time will be great for this. Our daughters in college at Villanova, plus I sure could have saved a bit more to offset being out of work. Although I could put off surgery until my symptoms were more severe, my feeling is why wait. I don't want to do any more damage to my heart than might already be done plus the healthier I am, the more quickly I'm likely to recover. I'm hoping this speed bump in the road is smaller than bigger, and I know the longer I wait, the bigger the bump.


My surgery is scheduled for April 8th.

Chris.
 
Scotty,
I can totally relate to what you are going through. 18 months ago after a routine physical I found out that I would eventually need mitral valve surgery. The Cardiologist encouraged me to have it done sooner than later. I've put it off for the last 18 months and my condition has not significantly deteriorated. I do prefere sitting and often have a forceful heart beat, particularly after meals. At my last visit the Cardiologist stated that the surgery was a risk that I would have to take eventually and that my odds presently were about 97-98% of making it. I'm 50 years old and also have college age children and a son thats 7. I realized that spending most of my time watching TV or on the Internet worrying about the surgery and my condition was not a very good quality of life and that my son as well as the rest of my family deserves more. My job consists of working behind a computer so I could probably go on like this for a few more years.

About a week ago I made my decision to have the surgery. Needless to say I am rather anxious and even questioning my choice, but the thing that I keep thinking of is that this has got to end. I'm tired of going over and over it and have decided to just take to doctors advise. My surgery is scheduled for next week. I go into the hospital here in Tampa, FL on Wednesday 1/30/02 to have the cath. and the surgery is scheduled for the next day on Thursday with Dr. Dennis Pupello.

I'll be praying for you Scotty that you'll be lead to a decision and good results.
Frank
 
Decision Time

Decision Time

Oh Scottie, I know where you are...it is the hardest thing to decide, but please don't give up the rest of your healthy life...this is the most momentous decision you have probably ever had to make, but this surgery is near routine with the surgical teams...they know what they are doing. The risk is there, of course, but it is so small. Everyone must decide if it is worth it to them or not,but I can say that the quality of life afterwards made it so worth it to me. I will not hesitate if the need of a second surgery comes up (my good old homograft!). Good luck and we will be sending prayers your way. Keep us posted.
 
Descisions

Descisions

Scottie ---

I hear the fears that are keeping you from making a decision and I suspect that there is a good amount of depression about your situation that is making the decision even harder. It's a real shock when you are confronted with the fact that you need any kind of heart surgery.

I recently decided to have AVR and MV repair or replacement, even though I have no apparent symptoms and no restrictions now. I've been monitored with echocardiograms for 4 or 5 years now and the cardiologist recently told me it was time to consider surgery. I've opted to have it done as soon as it was practical for me and my family and the date is no w set for 2/26. I'm not looking forward to the surgery or the recouperation period, but I am looking forward to the many extra years that I believe this will add to my life, years I'll be able to spend with my lovely wife, my children and my friends.

Since your about 18 years younger than I am, I realize that you are at a different place in your family life. I put a couple of kids through college and graduated schools, so I know the drain it can have on family finances. However, who do you think will pay for their education if a year or two from now you are not able to work as hard, or not work at all, or God forbid, not even be around? It seems to me that a temperary setback in income now would be much easier to handle.

Also, check with your doc rgarding recovery periods. Many people are able to return to work in 8 weeks or less.

As for the risks of the surgery, a consult with the surgeon will probably show a surprisingly high success rate, especially for men in your age group. Don't forget, the 2% or so that experience problems in surgery include a lot of older and far less healthy people.

Lastly, you need to ask yourself what your obligation is to your wife and children. I think it involves much more than paying the tuition bills and the normal financial stuff. What about the love and guidance, the celebrations of milestones in your life and in theirs, the grand children, if your blessed with them, the wonderful days when you have the bills all paid off (it acually happens) and you have the descressionary money to take the trip to paradise, or that cruise you've been dreaming about.

Scottie, you've got so much to live for. Do what you have to do to give yourself the best chance to live a long, healthy, happy and fulfilling life.

Please consider this when you make your decision.
 
hi scottie!
wow! what a difficult time this is for you... these decisions are the toughest, we found. joey, 49, had his surgery done about 4 months ago. his symptoms were accelerating quickly and it was clearly time to do it. he was very short of breath and had a hard time with his workouts. his cardio actually advised him to stop exercising altogether at that point. so our decision to go for the surgery was a very easy one.
we too have teens and one will be leaving for college this fall. we felt that we were lucky that the timing of joey's surgery worked out just right (he could have been going in for the surgery when our daughter was first starting college_ in which case that would prove to be very disruptive to her schedule and fresh start).
i must tell you that i could cry each time my husband tells me that he cannot believe how deep a breath he can take today. it feels so great to him and i am so thankful that we can now relax and enjoy his health.
i wish you all the best of luck in your decision-making.
be well and God bless,
sylvia
 
Hi Scottie,

Of course the decision is yours, but I think that getting the surgery while you are still fairly healthy is a smart move. It will aid in a faster recovery for you.
Like you I was coping with the minor symptoms and to be honest didn't think much of it. When I was told I needed surgery I wanted to put it off so that I could finish my class's. An unexpected trip to the ER changed my mind and when I was called and told there was an opening in the surgery schedule I took it. I am not sorry I did.
The down time is really minimal esspecially when you consider the alternative. In my case I was back in class 6 weeks later and still passed all my courses. I am now almost 10 months post op and working my tail off with no ill effects and most importantly no down time due to lack of energy/symptoms.
Everyone is different and you may recover a little faster or slower than I did but you will be able to still support your family and your childrens college efforts and do it in good health.

I wish you well in what ever decision you make!

Mike In Houston (49)
AVR April 5 2001 St Judes Mech
 
Hi Scottie,

Someone tried to persuade me that surgery gets easier with time - if you've had one you've had it all, right?! Wrong! Surgery does not get easier with time. You know the routine of course but that isn't the same as feeling comfortable. I was very casual about mitral valve replacement surgery. I really needed it -- was highly symtomatic at the time of surgery. A year passed by and with it a new need for more surgery arose. I agreed to it reluctantly and because my husband was as persuasive as they come ;)... Oh well, with the surgery, which entailed AVR, I did actually return to fairly good health. Could walk stairs without the hated shortness of breath. For a time I even got off the antiarrhythmic drugs I had needed for several years.

When the dilated cardiomyopathy appeared on the stage it was harder. The symtoms of heart failure were very subtle - hidden under a quilt of heart medication and medical technology. By the time they diagnosed it I was too ill to be considered for anything but a transplant. I agreed to go on the list not because I wanted more surgery but because I wanted to remain alive. I did want to see my niece grow up, I did not want my husband of 14 months to have to arrange my funeral and, most importantly, there were so many things I had not done. If I did not go on the list I would never get a new heart - if I did not get a new heart I would die very soon. There were times when I thought to myself that it's not worth it, I won't get a new heart, why didn't I just take the time they had given me and do the best of it? But with advanced heart failure there are not much you can do your best with. I could barely take two steps on my own. If I took five that would be an olympic challenge... My family worried about transplant complications; the immunosupression therapy which can make even the simplest infection into something you have to watch carefully and the risk of surgery itself. But, as the surgeon pointed out to them, with surgery I had a chance, without it my chances of survival was non-existant...

Heart failure is a very crappy way to die! Valve failure left untreated, even with moderate progression, makes life hard to live.

Ultimately, the decision is yours and yours alone but life will be simpler with surgery than it ever is without. I am happy I didn't settle for less although it did take me several months to feel more than an ounce or two of gratitude.

The better condition your heart is in by the time of the operation the better you will recover.

All my best,

/Jessica
 
How did you decide?

How did you decide?

Hi Scottie!
We talked for a short while the other day in the chat room. Believe me, there are more than a few people in here that have been where you are. Making that dreaded decision. You are fortunate in that you can make this elective surgery right now, but later you may not have that choice. That was what was going through my mind when it came time for my decision. I was asymptomatic. Or so I thought! I blamed all my symptoms on menopause! I knew I had an ascending aortic aneurysm and a regurgitating aortic valve but it was being monitored so I went on with life as usual. When I went in for my 6 month checkup my cardio said it was time! Whoa! I had things to do! My daughter was getting married in a few months, my son was coming to visit from LA, etc. I had a ton of excuses. After a few weeks of vascilating about this, laying awake nights imagining the worst scenarios and generally making myself a nervous wreck, I bit the bullet and scheduled. It was the best thing I ever did. Better to do it now with a relatively healthy heart and no other physical problems than wait for things to get worse and I was assured they would. I know what a tough decision this is, but we all are pulling for you. Your age is a big plus and it actually isn't as bad as I thought it was going to be. Really! We are all living proof of that! It has been almost 2 years now and I thank God everyday that I didn't wait.

Hang in There!:)
 
Thankyou all for your replies

Thankyou all for your replies

Thanks everyone for the thoughtful replies that you gave ..it is good to read of some of the positive thoughts that you raised ...I had not really given much thought to my Husband and his situation in this ..as you pointed out we might have a lot of yrs together if the surgery goes okay ....I probably spent too much time worrying about the kids ...
Anyway taking all your points on board I have agreed to meet with the Surgeon in Edinburgh ..I've made up a list of questions ..in conjunction with my GP and myself and my husband will quiz him in March (I'm dealing the NHS,hence the wait ) ...
We have also investigated the Surgeon and found that he has an excellent reputation and a special interest in dealing in Surgery with Adults with Congential Heart defects ..so we have decided to listen to him very carefully
Thankyou all for taking the time to reply and for giving me something to think about ..I do appreciate all your answers
Scottie
 
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