Has anyone ever cancelled their op ?

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S

Scottie

..stupid question I know but ....I just got my approx date ..the hospital called to see if I would be available for the end of Aug ..I've been waiting so long I'd almost forgotten about it ..after reading all the posts about Ross and other people I have to question whether I really need to put myself though this ..I still have a good quality of life ...okay I get tired and sometimes breathless ..but hey better than a lot of folk ...I work full time and look after a three kid household (ok ..so the hubby helps LOL) and I have a full social life ...I have not told my hubby that the hospital called yet ..I'm going to let him have this one week of holiday and golf ..and I have some serious thinking to do ..I called my cardio and she is too phone me back on Tuesday and I hope to discuss with her whether I can delay for a few yrs ...a lifetime delay would be my option ..I find it hard to make an informed decision as the surgeon and the cardio gave such two different reasons for having this op ..the cardio said it was to give me a longer life and the Surgeon said it was to be done by the end of the yr ..or else ...this will be surgery number 4 for me although I had the others as a kid ...it is not easy to go into hospital to put yourself through months of feeling awful ...
am I alone here ..anyone else feel like I do ?...maybe I'm being a coward ..but I can't help it ...sorry to be so downbeat ..
Scottie
 
Scottie,

As someone who has Scottish heritage, my father came from a little town called Stepps, located outside of Glasgow. I share your concerns.

I was diagnosed with Aortic Stenosis, due in part to a bicuspid valve, in 1999. At the time I was advised to monitor it. In April of this year I had another echocardiogram after my annual physical and they are now telling me to get it fixed. This is after a TEE and Heart Catheterization. Good news is my arteries are clear; bad news is they want to replace my aortic valve. So I am scheduled for AVR replacement on the 15 of Aug here in Lincoln Nebraska. Unreal.

I have talked at length with three experts in this area. The latest cardiothoracic surgeon to talk to me (a much respected surgeon and professor) stated -- ?Aortic stenosis is an occult killer and the decision to operate is based upon the gradient across the valve because the stenosis imposes a workload upon the cardiac muscle which in turns hypertrophies in response. It can grow to impair the blood supply to the muscle thereby giving rise to angina in the absence of coronary blockage, present with sudden fainting spells and sudden death with exertion, and finally heart failure that may not be cured with valve replacement. The timing of operation is to try and do the operation just before the last three items occur.

For a young person the preference is to use a prosthetic valve of durable material (such as St. Jude) rather than a homograft or xenograft valve because the later two usually require a second operation some 8-10 years later in a high number of patients especially those with vigorous heart muscle function.

The prosthetic valves do require a low level of lifetime anticoagulant therapy.

You are wise to peruse the operation before your muscle and other organs are impaired.?

So --- I am going to do it.

I, like you, am very concerned with the stories about Ross and some others. I sincerely wish him speedy recovery. But, I have to conclude he is the exception to all this and really not the rule. If I did not believe that I would be about crazy at this point.

I pray for Ross and the others but I have to consider myself and the consequences of not doing this. There is no cure to this problem, only treatment.

So I hope you make the right decision. At this site we all pray and care for each other, this is most refreshing and very comforting.

I wish you the best and hope you make the right decision. After all it is really your life.

Walter.
 
Hmmm...

Tough choices Scottie. I expect that before making your decision, you need a better understanding of WHY surgery has been recommended. If your valve(s) really are deteriorating, it is best to have surgery before the heart suffers any permanent damage. Your cardiologist should be able to assess this for you. Have you had Echograms and maybe a more definitive TEE (TransEsophagael Echogram)?

It's probably not a good idea to compare your situation with others whose pre-surgery conditions are not similar to yours.

'AL'
 
Hi Scottie-

It's so true that reading posts from those who've had many complications is scary. I have often wondered if I should reveal some of the things that my husband has had to go through. But, there are many different medical conditions represented here, and if one person can be helped by learning from what I've said then it's all worth it. Some conditions are extremely complicated and of long duration and others are serious but not as complicated. Each person's condition is slightly different.

There is sufficient knowlege in cardiology and cardiothoracic surgery to determine when it is necessary to operate on the heart. It's a scientific decision, rather than an emotional decision. So when your doctors tell you that you should have the surgery done, they are not kidding around. They have some evidence in black and white in the form of test results, that you do need this surgery.

It's even more true with the healthcare system you folks have there. They try to put off surgery as long as possible.

I would believe the docs when they say it's time.

Of course, you will be very apprehensive. Anyone would be a fool not to be, but getting a serious condition to a livable point is of the utmost importance.

I'm betting your family wants you to get fixed up and feel better. They love you and want you around for a long time to come.

Best wishes, Scottie,
 
My dear Scottie - you have not wanted this from day one and all of us who know you know this. This is a decision that only you can make, along with the evidence and advice from your doctors. Since this is MAJOR surgery you are facing, it is understandable about your fear. After all, your life is going well at this time - and you have been through surgeries as a child, probably leaving some long term memories and fears. I won't give an opinion as to whether or not to go ahead. Just know that I love you as always.

As for others having bad times - we have Ross who has been in terrible danger last week, but, then he did tell us he would have these problems before he ever went in. And then he got that awful infection that was not totally clear before surgery, but they went ahead anyway. He has lung problems and other problems that have been in place for some time now and, of course, any surgery for him can be a danger. And there have been a few others, not as iffy as Ross, but were in trouble. You have been with us a long time now and you know how many happy successes there have been. Nobody knows ahead of time what is going to happen, but we have hope.

And so, Dear Scottie, the decision is yours alone - and ain't it lonely out there? But whatever you decide, you are still in my heart And I always wish the best for you. Ann (Hensylee)
 
Scottie - I felt so good that I had to question why I was doing it. My primary physician and second opinion both told me that I must go ahead. Even after that, I had to question whether I wanted to go through it. I must admit that all the successful surgeries and storries at this web site helped me get through that mentally. Fortunately, there was no Ross situation at that time. It turns out the surgeon questioned why we waited so long after the surgery. In retrospect, I should have done it sooner. I feel great today, but am not looking forward to doing it again. I would like to encourage you to go ahead. So just take the date offered.
 
Your Surgery

Your Surgery

Hi Scottie,

We in the UK are at the mercy of our NHS,

We have little or no choice as to when the surgery will take place.
therefore if we are feeling well we question if we really need it

I am glad that things are good for you at the momment and hope this continues for a long time to come

We all know how serious heart conditions can be, but if our NHS advises that you have it done now,I would be inclined to get it over and done with,

My Surgery date was cancelled the first time and I was so upset,I waited another10 weeks and that was a terrible strain on the family

Talk it through with your cardio and your family and maybe it will help you reach your decision and always remember all your friends here are thinking of you

Take Care

Jan
 
Dear Scottie,

It is difficult .....we know deep down we have to try. It is a matter of 'human survival instinct'. Believe me, I thought long and hard before going in. My decision was based upon heart enlargement. Second, being I had a baby and husband at home that needed me.

It was the most difficult decision made. Recovery was long and drawn out due to complications. Would I do it again for a second chance at life? Certainly.

Wishing you all the best in your decision process.
Take care.
 
hi scottie!
i am not alone here in wanting to lend a hand in your decision. unfortunately, as hensylee said, it is yours to make in the end.
please don't be discouraged by things you read like ross's situation. as others mentioned, he knew he had several other issues going into the surgery. still, he is progressing with each day.
this situation is out of the ordinary and please realize, as nancy said, these surgeons are really qualified and do this well.
think of all the success stories you've read here instead!
i think that it must be even more difficult when you go in for this surgery after having had it done before_ no surprises. you know that the recovery can be long, tedious and painful.
still, i cannot advise you any better than all those before me did. discuss it with both your docs and maybe ask why one feels the need for surgery is sooner than the other does.
i do agree though that it will benefit you to do it before things get worse.
i can truly empathize with you, this is not something you want to have to look forward to. still, aug. 18th is around the corner and it would be over before you know it.
please take your time and think about it and let us know what you decide.
wishing you all the best, sylvia
 
Thankyou kind people

Thankyou kind people

thanks to all of you for replying ...
Walter I sincerely wish you all the best for your op and will be praying for you on and after Aug 15th ...

Al ..I've had a heart Cath and the Drs say my heart is already enlarged and that the pressure is building ...just find it so hard to believe .

Nancy I know you are right ....I don't really compare myself to Ross ...who is in my prayers everyday ...but one can't help wondering if we should take the days we have and be happy with that ...

Dear Ann (Hensylee) your words are so comforting ..I wish you were my Mum ...you have a wonderful knack of knowing exactly how people are feeling ...thankyou for your kind words ...you're right I never wanted this and have fought it all the way ...I always did ..even as a child ..some Drs said it was this fight that brought me through many battles ..It would be a dream come true if we were too meet one day .

Bill ,Jan Gina and Sylvia ...thanks ..I am holding until Tuesday until I have a chat with my Cardio ..but I think I know deep down that I have to do this ....maybe I have to get this I DON'T WANT TO DO THIS off my chest ..and I can't do this at home ..I smile and say to my kids ...this is nothing ..I've done bigger and better before ...
anyway thanks
I'll let you know
Scottie
 
Scottie's dilema

Scottie's dilema

Hi Scottie,
Everyone understands your reluctance-- you seem to be following the old saying <<if it ain't broke, don't fix it>>, however, I think it is broke, even though you feel good. What will your husband say?

I am in a similar situtation, tying to decide if I go forward or not. One doctor says go for it and another says << you would just be exchanging one set of problems for another>>, (I need two replaced and I'm pretty symptomatic).. So I can relate....

Good luck with your decision,
fdeg

PS Don't tell them no, if it may take you another year or more to get back on the list
 
Scottie - what a lovely compliment - thank you. Had an e from Steve this morning and seems Ross has turned the corner for the better. Often things come out good news.
 
Dear Scottie,

I don't wish to add to your dilemma but, I am having a similar problem. I am very apprehensive don't want to do it. I have been through another surgery and I know what is ahead. There is never really a good time for this is there. Ross' situation added to my fears as well. I have to make the desicion also and it is not easy. I don't have a date yet though. I will be seeing the surgeon on Wed. Maybe he will say I can wait. Maybe he will convince me one way or the other, I don't know. I just wanted to let you know you aren't alone. It is a difficult desicion. I'm sure you will make the right one.

Best of Luck
BECKY
 
bigger picture?

bigger picture?

Hi Scottie,

I remember responding to one of your posts when you were trying to decide if you wanted to go meet with a surgeon regarding possible valve replacement. Remember the response that urged you to consider your husband and your children as well as yourself?

Well, I'm back with the same message. Yes the ultimate decision is yours. However, why should one accept the days that they have left, if there is a way that many additional years can be added onto one's life? The statistics for successful open heart surgery are 98% chance of success, and even higher if you are in pretty good shape and relatively young. The folks who have the serious complications are the ones that have other health problems or advanced age working against them.

Since you are working regularly and feeling fairly well most of the time, and since you are young enough to have college age children, I assume you are certainly in the favorable group.

Won't it be nice to be at the graduation exercises for your children? How about attending their weddings? Any desire to see grandchildren eventually? How long have you been married? Wouldn't it be nice to celebrate a 50th and a 60th anniversary together? Have you done everything in life that you hoped to do? Wouldn't it be nice to have an extra 30 or 40 years or so to accomplish so much more? Wouldn't it be great to be retired with your husband and able to travel or do whatever you two like to do together?

Scottie, I understand the fear you are facing. All of us who have been in your position have felt it and had to deal with it. However, I made it through at age 59 and I haven't regreted the decision to go through with the surgery for one minute. I figure that I traded about 6 weeks of discomfort/inconvenience for many, many additional years of life expectancy.

So, the choice tomorrow is still yours to make. I sincerely urge you to look at the bigger picture and for your sake, for your husband's sake, for your children's sake and for the sake of all your other friends and relatives, do what you know you have to do to improve the quality and add additional years to your life.

May God grant you the courage to change the things you can.

Ron K
 
Last edited:
Decisions, dec....

Decisions, dec....

I want to add my complete agreement to what Ron K says. I'm also a bovine type knowing full well mine may be replaced again and so forth. My new life is so refreshing and we are starting to travel again. All my grandkids have spent the last week with us while their mothers get ready for school to start. What a wonderful joy - one I might have missed.
Talk first with the Lord. Then do what He would want. I did and here I am doing both His things and mine and enjoying them both. May God be with you and help with your decision.
Hugo
 
Hi Scottie,
I also wondered about why I was having my AVR surgery, since I was feeling well and had a good quality of life. Why mess things up? I also worried about simply not showing up at the appointed time for the surgery. I did that once about 5 years ago for a different type of surgery not near as serious as aortic valve replacement. Over a period of 14 years I had been to about every cardiologist in my town and went to the cardiology center at Stanford University Medical Center in California. Everyone agreed that I had Aortic Stenosis. After 3 6-month interval visits to Cleveland Clinic by age 69 I finally made up my mind that life was far from over and I didn't want my heart to deteriorate beyond the point were it was repairable. So I did it. Where I found the courage to not turn and run at the last momement I do not know. I continued to feel that agreeing to the surgery would be so much easier if I was having nasty symptoms.
The surgery went remarkably well, it was pretty easy on me with very little pain. I was out in 4 days. Today I'm feeling well and glad I did it.
Best wishes,
Don
AVR; 4/12/02; Cleveland Clinic; Cosgrove; Bovine
 
Scottie,

I feel the same as you - i dont want to do it! I know that the alternative is very bad so i have to do this. I go for a cardiac cath this wednesday the 7th and will schedule after that. You have to do it for yourself and your family, they want and need you healthy. After its over you will enjoy them all so much more - thats what several people told me and i believe it. Keep us posted every step of the way, we all have a bond here.

Best of luck to all of us!

Bob
AI, AS - Surgery within weeks - Decided on the Ross Procedure (I think)
 
Thanks to all of you

Thanks to all of you

for replying ...
fdeg ...good luck with what ever you decide ..I'm sure you will go ahead ..you sound very sensible ...let us know the date

Becky ..is this the Wed you see the Surgeon ..how did you get on ?

Ron ..Thankyou most sincerely for your very kind words ..if I go through with this I will keep whispering them to myself as the reason I'm doing this ..you were very thoughtful ..and I am so glad to see you are doing well.

Hugo ..you are right to say leave it with the Lord , I know that ..just I've always been a bossy one ..so easier than it sounds :)

Don ..hey I can appreciate what you went through ..and understand how you feel. ..Yesterday I met a lady aged 70 who is terribly breathless has a cough and can't walk far now ...she has still a ten month wait for surgery here ...I think seeing her pushed me nearer to surgery .I do not want to get as bad as that ..poor Lady ..i told her to go back and see her GP and make a fuss.

Bob today is CC day for you ..I'll be thinking of you all day ..let us know how you go ..we're in the same boat ..take care :)

thanks again all
Scottie
 
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