I share the same fate...

[Paula (in Finland)]

I'm 40 years old woman. I live in Helsinki in Finland (Scandinavia, Europe). My congenital aortic stenosis was diagnosed already when I was born, so I have known all my life that I'll need a heart surgery some day and now I'm facing with it. I will have a new aortic valve within 4 weeks. I found out last May that I need some kind of operation and one option is this Ross procedure and I feel that it may be the best choice for me. Thus I'm very confused because, I don't have any symptons at all. Before spring I thought I could live with this heart all my life and I was not paying attention to it at all. Every time I had my yearly control visit I told my cardiologist that I'm just fine?. there is nothing wrong with me, don't lie to me guys!

But now doctors have convinced me that I really do need some operation before my heart will be damaged. So I will have my operation in Helsinki and one thing that worries me is that here is perhaps only one surgeon, who has done Ross before and he has done it perhaps only 10-15 times. I know we do have here in Finland the very best heart surgeons, because our "national disease" is coronary artery disease, but there have not been many persons with my kind of problems. Do you think that I should however in my situation take the homograft, porcine valve or even mechanical? Thus I'm not willing to take any medicine (which I should do, if I choose the mechanical valve). I am a very active person: I play tennis and badminton and also dance and do slalom skiing and I'm not feeling as "a senior citizen" yet.

I told you that I don't have any symptoms, but I like to share one "odd thing" with you. When I go out (especially in winter) and there is very hard wind and perhaps also snowing, I feel that I can't get breath and I may panic. When I was little I even waited for a bus in a phone booth; now we don't have any booth left because everybody has a mobile phone (thanks to Nokia) and I don?t have any place to run to!!!. Did you have had any such feelings before operation?

I'm going to have my operation done here in Finland at Helsinki University Central Hospital. I just have to trust our surgeons and I don't even have enough money to have it done in USA. Thus I wrote that I'm worried, I do have 100 % trust to our surgeons. I'm sure that they don't plan do any operations, if they can't be almost sure that it will be a success. Yearly in that hospital they do aproximately 2000 open-heart surgeries and for instance their heart transplantation success rate is one of the highest in the world.

In Finland the operation dosn't cost me anything because our public health service will pay everything. I found out last week from my cardiologist that the surgeon he recomended will do the RP and I am hoping to meet the surgeons soon, so I can ask some questions. On Tuesday, September 10 they will do the catheterization and I also think that it is good to be done before the RP.

I have to stop now because I think this is meat to writing only a short story. I would appreciate any advice or support. It is great that we do have this forum and I'm not feeling any more that I'm all alone with this problem. I have always been a very positive individual but this is the first time I do have a very hard time in my life. Its odd how that one little organ suddenly became to be the most important thing in your life, the center of everything....

Kind regards,
Paula

 

[Bill Hall]

Paula - Welcome to this heart valve web site. I had my surgery in 2001, even though I had little or no symptoms. It was really difficult to face a surgery when I did not feel that bad. That was a bad thought because my left atrium was enlarged and the leakage was severe. I guess my heart compensated for the leakage. Anyway, I went through with the surgery and feel just about the same as before surgery. There are no limitations on my activities and I am age 49.
I had my surgery in Cleveland with a Mitral valve repair and aortic valve replaced with a homograft. I chose the homograft to avoid blood thinners. It's good to hear that you trust your surgeons, they know what to do and are educated to perform the surgery.
I want to wish you the best of luck in your decisions and upcoming surgery.

 

[Nancy]

Hi Paula-

Nice to see you here on valvereplacement.com. A couple of years ago I traded flower seeds with a gal from Finland. I have some of those plants in my garden now. So I have a little link to Finland right in my yard.

My husband is the patient here. He's had this surgery 3 times, plus lots of other surgeries. He's 71 years old and still chugging along.

It's scary to have to face this surgery and no one will tell you that you shouldn't be nervous about it, but you should keep certain things in mind.

The docs won't tell you that you need surgery unless it's absolutely needed. Your heart can fool you and it's a wonderful organ because it will work extra hard to make up for the deficiencies. But this eventually takes its toll on your heart and there will come a time when you could get very sick. So it's best to get things done before it goes too far. If your doc says it's time, I would believe him.

The surgery will save your life and give you back your life span.

The doctors who do this all the time, are meticulous in their skills and have expert training. They know everything about the inner workings of the heart, and they know how to take care of the most difficult problems. What you have they've probably seen a hundred times or more, so it will be routine for them.

The surgery isn't easy like an appendectomy, but it's not as bad as you might think. The recovery takes about 6 weeks on average for the initial phase and 6 months to a year to start feeling "on top of the world". You will be feeling better each day.

Please use this terrific site to help you prepare for surgery and do ask all kinds of questions. There are wonderful people here.

What is the exact date for your surgery? We can put it on the calendar so we can keep track of you.

 

[JimL]

Welcome, Paula, and thanks for the short story. I find it interesting to read so many of the details of my own health history written by someone else.
I had my surgery last fall at age 46. I had not had any symptoms that troubled me until a few months before surgery. I had practically forgotten about the "mild aortic stenosis" I had been diagnosed with so long before. As I look back, it is surprising to me how fast I went downhill. At the time I finally got the surgery done, I don't think I had much time left.
I had a St. Jude put in -- I didn't really have much time to consider any options -- and I don't regret it. I feel younger every day, more active than I've ever been before.
It's good to gather all the information you can, but the decision you make is the right one.

 

[Nancy]

Hi Paula-

I meant to answer your question regarding having a hard time trying to breathe in cold weather. My husband has had the same thing. Our winters are quite cold here in northern New York, and he doesn't do too much outside in the cold. He had a repair on his mitral valve last summer, so this winter, perhaps he'll be able to breathe in cold weather better. He's no longer breathless in regular weather.

Putting a knitted scarf over your mouth and nose can sometimes help. But you might be better after surgery. I hope so.

He also had a hard time in very hot weather, especially when it was humid. This summer that was better.

 

[Adam]

Hi Paula,

This is Adam, I had the Ross procedure this past Aug 22, 2002, so it's been just over 3 weeks. In retrospect the surgery wasn't as bad as I thought it would be. For me personally the first 2 days after were "hell" as I was extremely grumpy and irritable (I don't know why). As for the tubes and wires one hears about, they really weren't that uncomfortable but I was glad to have them removed a couple days after the surgery. My surgery was a bit long (about 71/2 hrs.) but my family tells me that I looked great just after, none of the gray color or bloating from the heart/lung machine that is sometimes present. I don't know if I was lucky or had a gifted surgeon or maybe a little of both but my recovery thus far has been smooth and without incidident. In fact I feel much better than I ever thought I would at this point. Paula if you have any specific questions about the Ross procedure please email me at [email protected]. I look forward to hearing from you.

Adam