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

 

[Christina]

Welcome Paula from Finland...

Welcome Paula from Finland...

Hello Paula, and welcome to our ever growing online family. This is the greatest place to come for information and support.
Most of us have gone through what you are about to go through, so we know what we are talking about.
I am sure many will come after me with their own suggestions to you, but ultimately, it is your choice what you are going to do. But we are here to help, so ask away.
I am originally from Holland but live in the USA.
I had my surgery two years ago and had the same thing as you. Congenital Aortic Stenosis. I was unaware of it though and had no idea until I went to my doctor with what I thought were menopause problems. I got the shock of my life!
I had my surgery within three weeks and my surgeon chose the mechanical for me. I was not aware of the RP at the time until I read about it on-line.
I am doing well right now, but it takes a while to get back to normal.
I am on Coumadin but do my own testing with the Protime machine so I am not dependent on going to the lab.

Please come back often.

Christina
Congenital Aortic Stenosis
AVR's 8/7/00 & 8/18/00
Tucson, AZ. USA

 

[Scottie]

Welcome PAula

Welcome PAula

hi Paula ..welcome to this wonderful site ....I live in Scotland ..and was born with heart problems too ..and am 42 yrs old ..but as a child I lived in Helsinki for 4 yrs ...my father worked for the British Embassy in Helsinki ..I went to the British Prep School and then the American School there ..I will never forget your amazing country ...and have often wished to take my family back there but we do find it an expensive place to visit . You are right in that the reason that my father was posted to Helsinki and not to another country was the wonderful heart care that your country provides ...at the time it was a forward thinking country in so far as heart medicine was concerned and I'm sure this is still the case ....so you are right to put your faith in your surgeon.
I go for my op on the 10th too so we can think of each other ..I too don't have many symptoms ..just tiredness and some palpatations which I think are liveable with ..but for once I'm going to take the advice offered ..you should do the same ...
nice to meet with you ...let us know how you get on ...
Take care
Scottie

 

[Kevin M]

Hello Paula.

It is very normal to have the feelings of panic. It is a stressful thing to accept that you need surgery.

Sometimes your symptoms show themselves at peculiar times. I remember that I would have that panic feeling and shortness of breath when I would climb the stairs on our home.

One time I passed out in the bathroom after running up the stairs.

It is tough to accept that you need surgery, especially when you feel quite healthy. The benefit of having it done before you have symptoms is that your heart will not be damaged by your condition and subsequently, your post-surgery lifestyle will be better.

Making the choice of what type of valve to get is difficult. Those of us who have the choice always often struggle with it.

You may want to speak to Mara or some of the other members who have had the Ross Procedure as to what they think of it.

Unless your specific condition requires one specific procedure over another, your age allows you to have any type of valve.

As you know, a mechanical valve will likely last your entire life and you may not ever have to face surgery again.

The biological valves will allow you to live without having to take coumadin, but at your age, you will likely face a second surgery within 10-20 years.

The Ross Procedure is supposed to last a very long time and would not require blood thinners on a long term basis.

There is a lot of research online that you may wish to look into.

I do not want to influence your decision in any way, but please take comfort in the fact that any of these procedures will allow you to live an excellent and very active lifestyle after your operation. Gone are the days when valve replacement patients had to deal with high mortality and complication rates.

It sounds as though you've got some excellent care facilities in your country. That is great.

It's always good to look at the doctor's experience with a particular valve replacement procedure. You are not an experiment - it's important to feel comfortable with the doctor and the procedure you are going to have. Be strong and question the doctors to make sure you get the information you need to make your decision. It is your body.

Thanks for sharing your story with us. If you ever want to chat, feel free to email me.
Kev