Am I taking things too lightly?

[CathyK.]

Hello everyone! I will start by introducing myself to all of you. I am a school nurse, am married, have 3 sons (18 yrs, 16 yrs, 15 yrs), one step-daughter and son-in-law with 4 grandchildren. I was diagnosed with a bicuspid aortic valve 5 yrs. ago and also have a mitral valve that prolapses. Both valves have regurgitation. I have been going in for echos every 6 months since I was diagnosed. In July I was told that my chamber has slightly enlarged and I needed further testing. I had a cath and TEE and then met with a surgeon. He gave me options but never mentioned the Ross Procedure. My Cardiologist thinks it is time for me to have surgery, his colleague and the surgeon would like to see me push it a little longer due to my age. I just turned 44 on Tuesday. I am leaning towards scheduling it in Nov. but am not sure on what procedure. The surgeon would like me to go with the mechanical vavle, however I don't think it is right for me. I am leaning more toward the Pig or Ross. The only time I really got upset about all this was when my husband and myself left from talking to the surgeon. I looked at my decision of having to choose quality or quantity of life. Not an easy decision when you look at it in that way. I since have decided that my future is not in my hands so I can't look out to the 10 - 20 yrs ahead. By then who knows what they will have going on for the heart. I am not really nervous about surgery. I am looking forward to having energy again! I wake up exhausted and go to be exhausted. I like to be active so this is really bothering more than anything else. I guess I really didn't take things as seriously about my condition until I started reading your alls stories. It is a big deal but still feel real calm about the whole thing. I have decided to plan a surgery in my near future because I don't want it to become an emergency situation due to having others involved on the side lines. So now what surgery to schedule? The big question! Any help will be greatly appreciated!

Cathy

 

[geebee]

Cathy,

First of all - welcome. I am sure you will find guidance here you can use.

You mentioned that you feel you have to choose between quality and quantity of life. Could you expand on that statement a little? Why do you feel that is necessary?

I think you are smart in wanting surgery sooner rather than later. With mitral problems, especially, you can have permanent heart damage if you wait until you have major symptoms before having surgery.

It is not unwise to think of advancements that might come along but it is just as important to realize that things might not change that much either. You can count on what exists today.

Best of luck.

 

[Ross]

Hi and welcome.

I too, would like you to expand on the quality of life/Quanity of life statement.

That being said, Do you plan on having more children? If so, mechanical is not the thing to do. It's not impossible to have kids with it, but it's dangerous.
It's hard to choose because they all have good and bad points. I'm for whatever is going to hopefully keep you from ever having another heart surgery again and that would be mechanical. Even then, there is no guarantee that you won't have to have it replaced due to some unforeseen thing.

Best advice is to read Tobagotwos sticky thread up top here. He covers the ins and outs of each choice as good as it gets, then see if your still comfortable with your choice.

 

[CathyK.]

geebee,
After talking with the surgeon, he gave me the options of mechanical, organic (pig,cow) or homograph. And since I did not want to go with the mechanical I felt my choice was to wait as long as possible for longer life or make a choice of surgery now and maybe cut my life shorter due to having to go back in and replace the valve in 10 years (my 50's) and then another 10 yrs. (60's) and each time going in the surgeon told me that the mortality rate increases. I would really like to live longer than 60's and felt I had to choose surgery now and have better quality of life but maybe that decision would cut my life expectancy or choose to wait for surgery as long as possible and maybe live longer in the end. My thinking has since changed and don't really feel that I am choosing quality vs quantity. I can't control what might come ahead for me in the next 20 yrs. I have decided not to wait and I feel very comfortable with that decision.

 

[Ross]

That's good because the longer you wait, the more possible damage is being done. I'm screwed up for life for waiting too long and it's not fun at all.

 

[MikeHeim]

It's great that you have such a positive outlook about surgery. I didn't have too many symptoms, but I was very interested in getting the inevitable surgery over with so I could get back to living life how I wanted to and without restrictions. At the time, I was 28 and I couldn?t possibly imagine spending any more of my (relative) youth on the couch instead of hiking, running, surfing, etc. The toughest part was by far the time period between finding out that I needed surgery and actually getting it scheduled (about 3 months). After it was scheduled, I actually felt really calm about the whole situation because it was out of my hands. To date, I haven?t heard a really strong argument for trying to hold out for a couple years. It seems like you would only watch your quality of life get worse and worse, while at the same time risk permanent damage to the most important muscle in your body.

Like geebee, I don?t really understand the quantity vs. quality of life statement. Please explain when you have the chance.

I certainly wish you the best as you move forward.

 

[CathyK.]

Ross,
No more children for me. I am done! However the mechanical valve just kinda scares me. I don't want to be on ACT for the rest of my life and I don't know about that ticking. I have to have colonoscopies regularly due to colon cancer in the family and I am in good health other than my heart. I feel that it might make things out of wack that are now fine.

 

[Karlynn]

Welcome Cathy!!! Wow - 3 teenage boys!

I would also agree with your thoughts of not waiting any longer. I had my MVR done almost 15 years ago, when at the time even surgeons seemed to be waiting to see that damage was being done before operating. While my life is active and wonderful, I do have a few issues because of damage.

Are you going to have to have something done to the Mitral or eventually have to have something done? If so, it's my guess that they will not consider you a good Ross candidate. But I don't know what you've been told.

I too am a little confused by the Quality vs. Quantity statement. I'm going to stick my neck out here (seems to be something I'm doing today. ) and guess that you may be assuming that being on warfarin with a mechanical will give you more years (quantity) but that the quality of life will not be good because of the warfarin. You may want to give this post a read, http://valvereplacement.com/forums/showthread.php?t=17116 and do some exploring in our Active Lifestyles forum to see the number of people on Coumadin who have great Quality of life.

I'm sure that your head must be spinning with all the news and decisions. I wish you the best as you proceed with your choices. And with 3 teen boys, you have quite a group of housekeepers to take care of the house and cooking after your surgery!

 

[Karlynn]

Oops, apparently we were posting at the same time. Have they had to remove polyps during your colonoscopies? Routine diagnostic colonoscopies can be done anticoagulated. Removeal of polyps should be done coagulated. But there is protocol for this. If they're always having to snip something - you may be right about wanting to stay away from mechanical.

 

[RCB]

Two Valve replacement

Two Valve replacement

is problematic and rarely done with tissue in younger (under 65) because it is the weakest link case. Your Mitral will wear out much faster then the Aortic, then do you replace both? It would seem that the Ross is out the question for the same reason, but I'll let the Rossers weigh in on that.

Don't forget the AF factor.

 

[Ross]

It's a tight thing. On one hand, you have the chance of never having the surgery again, but ACT for life, which really is not that big of a deal, though at times, it can be a pain in the tail, or going tissue and possible reops down the road and you may still have the possiblility of being on Coumadin if you develop arrythmias after surgery. It's a tough call no matter what, but whatever you decide, a decision is called for. Doing nothing will lead to certain death and I don't see that as a choice.

 

[CathyK.]

Karlynn,
Yes, I have had polyps removed in the past. You also got the quantity right but what I was meaning on the quality was if I went ahead with surgery and was leaning toward the tissue valve then more surgeries in the future might not be such a good thing as I am only in my 40's, so I was thinking I should have to choose to put off my surgery until ? to make my age older for the future surgeries. My surgeon stated to me that if I had surgery done now with tissue valve then in 10 yrs (50's) another surgery which doesn't scare the surgeons but the 3rd surgery (60's) is when the surgeons start to worry about the operation. He stated 20% mortality rate upon 3rd surgery.

 

[Karlynn]

Do you have copies of your reports and test so you can post your measurements? We have some pretty knowledgable members here who can see just how your heart looks as far as damage and function. (But that would not be me. )

 

[CathyK.]

As far as my mitral valve is concerned, nobody has really addressed that with me since they first found it. My cardio said one time that they aren't worried about that one, they are concerned with my aortic valve. No one has really addressed the mitral valve since then.

 

[CathyK.]

Karlynn,
No, I don't and all I was told that my reguritation is moderate to severe and that my chamber measures 4.4. Apparently the 4.4 measurement is why the surgeon thinks I could still wait awhile. My cardio said though, that the first sign of change, new evidence shows you should get the surgery done and take care of it. That is why I am considered the contraversial case, because there are differences of opinion. I have heard great things about both, the cardio and surgeon and feel comfortable with both. The only thing is that the surgeon never mentioned the Ross Procedure and I am not sure why.

 

[pipersmith]

Very nice to meet you - I am glad that you found VR.com. I know that it has been an excellent resource and support for me.

I am 33 facing AVR - and I am choosing mechanical. I have 4 kids, so I would not choose tissue so that I could have more. I am with Ross - I want to avoid more surgeries at all costs. I know that this is a complicated and personal decision - everyone must make based on his/ her own circumstances - those are the major critieria in my choice.

My advice to you is to spend about a hundred hours reading more (all that you can find) about each choice. You will eventually find that peice of knowledge that will sway you toward your final choice - a light bulb moment if you will. Talk to people that have gone both routes - mention your specific concerns. You have definately come to the right place.

I wish you the best of luck - you are in good company

 

[catwoman]

CathyK:

Glad you found us here. You have the option of time for doing research.

I chose mechanical 3 years ago. I had helped with my father-in-law's post-op care in 1989 after his 2nd MVR/1st AVR/quad bypass/aortic root replacement surgery. His first MV replacement only lasted about 10-11 years.
I too have a familial history of colon cancer; my mother is a 29-year survivor and her mom lived another 38 years after her colon cancer surgery. I had 2 very small polyps removed in 2001. Despite this, I went with mechanical.

Check the stats on your mitral valve. No reason to go through one surgery on your aortic and then later need mitral surgery. Some have been there, done that, but if it can be prevented, all the better.

 

[CathyK.]

Thanks!!

Thanks!!

catwomen and pipersmith,
Thank you for responding. It is a good feeling to be talking with people who are in the same situation as myself. You all are great!

 

[bvdr]

Karlynn,
Yes, I have had polyps removed in the past. You also got the quantity right but what I was meaning on the quality was if I went ahead with surgery and was leaning toward the tissue valve then more surgeries in the future might not be such a good thing as I am only in my 40's, so I was thinking I should have to choose to put off my surgery until ? to make my age older for the future surgeries. My surgeon stated to me that if I had surgery done now with tissue valve then in 10 yrs (50's) another surgery which doesn't scare the surgeons but the 3rd surgery (60's) is when the surgeons start to worry about the operation. He stated 20% mortality rate upon 3rd surgery.

Welcome! I have a St. Jude mitral valve and my heart issues all stem from rheumatic heart disease. I was already in atrial fib prior to valve replacement so there was no good choice other than mechanical. The "quality" of my physical health was very impaired for at least eight months prior to my valve surgery. In retrospect I had some symptoms that limited my activity for much longer than that. To me, looking forward to a repeat of that period of decline would be much more bothersom than having to repeat the heart surgery.

As far as ACT. It complicates other medical procedures but on a day to day basis it soon becomes very routine. The noise of a mechanical really varies amongst individuals. I got used to it very rapidly and most of the time I am not aware of it at all and I think I'm in the majority in that respect. Again, welcome and make yourself at home!

 

[Kate]

Hi Cathy!
Welcome! I have to agree with the rest of the responders in saying that you really don't have to choose between life quality and quantity. I had my aortic valve replaced at 38 with a biological valve and have every intention of living into my 70's or longer. If you go to an experienced surgeon, the mortality rates for even a 3rd open heart surgery are now under 10%. Of course, it's always possible you could be one of the unlucky 10%, but it isn't likely.

That said, if you are looking at two valves needing to be replaced, you really might want to consider mechanical. I know you feel now that it isn't for you, but most people on this site with mechanical valves for years have little or no problems. Again, you could be among the unlucky few who have serious difficulties with Coumadin, but that is also unlikely.

Basically, whichever valve choice you make, chances are well in your favor of enjoying a long, high-quality life! Best, Kate