a new member

[Jan]

Hello to All
My name is Jan I live in the UK two weeks ago I was told by a cardiolagist I would need surgery too replace the aortic valve , I am waiting for a follow up appointment with a heart surgeon. since I found out about this I have been afraid ,The cardiolagist said the operation would be done within six months he also said 4% do not survive the surgery and this has scared me even more He said I would have a metal valve as they last longer I am so confused I would be grateful if any of you could offer any advice as I was so shocked I did not ask any questions and I do not know any one who has had this surgery I would like too be able too talk too the surgeon (when I see him) so would welcome any comments/advice from the group on things I need to consider Thanks
Jan

 

[hensylee]

Wow, Jan, have you come to the right place. You will have every sort of support and information right here. You are going to be just fine - just ask us. We have so MANY members who have gone through valve replacement who can attest to your coming wellbeing. We even have Gillian in UK and Scottie in Scotland and Jonathan in UK. Our family will be along soon to send you good information - I can't address the valve issue myself, because I had quad bypass and not valve replacement. God bless and welcome

 

[Nancy]

Hi Jan

Hi Jan

Welcome to this site. You'll find lots of support here. My husband has two valve replacements (aortic and mitral) with mechanical valves and he is scheduled for a redo of his mitral valve plus a "look-see" at his own tricuspid for possible repair or replacing on July 18. He suffered from rheumatic fever as a teenager. He has had his aortic valve for 24 years.

You will do just fine with your replacement, and will feel so much better afterwards. Don't get all caught up in the percentages and numbers. The mortality rate figures include some terribly, terribly sick people who may have gone into surgery on emergency basis or might have other compromising factors. Figures don't always tell the whole story.

I'm so glad you found the site, very helpful people here. Tell us a little more about your condition.

Best wishes,

Nancy

 

[Scottie]

Hi Jan

Hi Jan

Hi Jan ...nice to meet you ..I live in the North of Scotland ...
I'm sorry you have had a scare from your Dr ..I was given similar news earlier this yr and found this website a great source of imformation and comfort ...I've been referred to Edinburgh and boy the NHS has come into its own in slowness ...I did a little jumping up and down ..(very politely of course ) with my Drs until I got a second opinion and have at last been referred to a Congential Heart Consultant ....it is scary ..I can sympathise and although I can't offer any advice about the operation itself I can tell you that I was not given the same sats about the survivial rate but fed more positive information about how my quality of life would improve ...if you would like to chat about this more as we seem to be in similar position please leave a personal note for me and I will e-mail you ...chin up ...I have already survived 4 lots of heart surgery where the surgeons were all doom and gloom and told I would never have children ...the three healthy specimins I have now have never given me a minutes peace for the last 16 yrs ....
Take care
Scottie

 

[McCln]

You have to understand that some doctors are made with stone. It seems that even surgeons are that way also. I was born with a Congential Heart Murmur and had repair on the aortic valve when I was eight years old. I am now 36 and facing the same surgery as you are, but in USA. I have to tell you that you as much chance of surviving the surgery as you are of dying during or ofter. So go for it anyway. You have a great chance of making it and living a long time. I have to do what I can to get ready and I am almost ready to pull my hair out. Last week, had to pick another Cardiac Doctor and found out the surgery will be performed elsewhere. And having dental work done. Had to have one wisdom tooth pulled and in two weeks for the other. And hope to not lose a molar. I have some infection in the lower gum of my mouth to get rid of and having a hard time of it. But I will have this surgery done soon and so will you. I have to have someone to say hi to when I have it ahd come back here to check up on you. So go for it. Have faith and you will be alright. Don't let the death talk get you down. It is to see how much you want to be healthy. Go for it. Just be patient.

 

[Gillian (in UK)]

Hello Jan,

So glad you found this site. I can understand your fear. We have all felt it. But I have experienced so much help and support in this forum, and before my operation was asking questions most days and got really helpful replies.

I was diagnosed with stenosis of the aortic valve about two years ago, and even though I had few symptoms had my new valve on March 13 this year.

Even though your doctor wants you to have a mechanical valve, I think its good to know about the difference between a mechanical valve and a tissue valve. The mechanical valve will probably last you for the rest of your life, but you will also need to take blood thinners (warfarin in the UK - coudamin in the US) for the rest of your life and you will probably experience a sensation of clicking with this valve.

With the tissue valve you don't have to take blood thinners and there is no clicking but you may have to face another operation late in life.

I am 66 and had a tissue valve (Toronto stentless porcine - pig valve). I preferred to take the risk of further surgery when I am old.

If you think it would help to talk to me, send me an e-mail or a message and I will give you my phone number.

I do hope you will get a doctor you can talk to easily. I found it helped to make a list of questions, and because I went to see the surgeon on my own I asked if I could record what he said. I don't think he liked it, but he said yes!

Wishing you all the best. Keep in touch and let us know how you get on.

 

[Mike M. in Hous]

Hi Jan,

Glad you found us. Not sure what # you were trying to say but assuming you were trying for 4 to 6%. I was told that the surgery had a 98% success rate and going by all the people here I would say it was even higher.
Doctors prefer the mechanical valve for those that are fairly young as it last longer and the likely hood of a second surgery is reduced dramatically. With the mechanical you will be on blood thinners for life but that sure beats the alternative. The tissue valves do not last as long (8 -12 years, sometimes longer) but do not require the taking of blood thinners. Some prefer to take the risk of more surgery rather than take the blood thinners and risk another surgery down the road when they may have more improved replacement options.
I my self went with the mechanical for my AVR on April 5 of this year. I have yet to get my INR to level out but I will with time. The ticking for me is not all that bad and for the most part I barely noticew it.
Ask lots of questions of you doctor and here also. You are bound to get all the answers you need from the great folks here.

 

[martha]

Hi Jan,

Welcome, my name is martha, I had aortic valve replacement on 12-15-200. I was 49 at the time, now 50. I choose a homograph, or a human cadava valve. Yes, the time will come in 15 years or so that replacement will need to be done. However, they will have come out with all sorts of improvements by then. All I need to do is take a baby asperin a day.

All thought surgery is no walk in the park you will be just fine. The worst part is the wait. And you will find that it's not as bad as you think . Don't let the doctors scare you. They always look at the worst case sinerio.

The more you know the better. It faces the cardiologist and surgeon on a different level. They become surprised as to how much you know. martha

 

[Christina]

Hi Jan...

Welcome to the greatest support on-line for Valvereplacement. Pull up that chair, grab a cuppa and make yourselves at home. You will be amongst family and friends.
I too felt very scared when I was told that I was only a few months away from heart failure. I had congenital Aortic Stenosis, and had no idea what that was. When I heard that I needed open heart surgery very soon, I was paralized with fear.
I had two open heart surgeries last August. Second one due to a blood clot that had formed underneath the valve. This was caused due to low INR. I received a mechanical valve and am on Coumadin. I think my INR has stabilized now, but am not taking any chances. I home check and I check often. Cannot trust doctors offices. Coumadin has not given me any side affects so far. I am doing okay after almost 11 months post-op.
You will do just fine Jan! These surgeries are done routinely here in the states. I know in the UK you have waiting lists, so I hope they'll get to you in time. I advise you to be assertive with your doctors, ask losts and lots of questions. Write them down before you go, and don't leave the office until he has answered all of your questions. Or fax the questions to him before hand and don't leave until he has answered all of them.
If you need to know what questions to ask, just ask us here in the forum and your doctor will think, boy, she's done her homework LOL!!!

Take care my friend. Let us know how you are doing.

Christina.

 

[Lorraine]

Hi Jan,

Welcome Aboard! You have definitely found the right place. Everyone here is so full of information. I didn't find this site until after my surgery but it still has been a God Send! I had an Mechanical Aortic and Mitral Valve replacement on March 8th. I also had my Tricuspid Valve repaired. I'm on Coumadin and so far so good. I am waiting for my six month checkup and then I plan to tell my doctor I want a Coagucheck home kit so I can check my own INR level. I agree with Christina. I rather know on a regular basis what my blood is doing, not just once a month. I commute to downtown Chicago everyday and I feel great! I spent almostt all of my life with valve problems and didn't even know it. It feels good not to be short of breathe all the time. In my later years my doctors were treating me for Asthma(which I never really had). Everything is a lot brighter now! This is a site. I've have many questions answered here. I agree, push to have the surgery. I opted for mechanical valves because I didn't really want to go thrugh another surgery. It could still end up happening if I get a bloodclot or something but I am most certainly healthier now! Keep us informed of how you're doing!

Lorraine

 

[Jan]

A Relieved new member

A Relieved new member

Hello to all
I am very grateful too all who took the time to reply and welcome me Just reading your replies have helped too calm me a little I do not feel so isolated now Your information has helped myself and my husband understand more.
It has been tough for us since 1994 when we were involved in an accident on the motorway my husband had a spinal injury and i had a compound fracture of the tibia and fibula,I had lots of problems and developed an infection in the bone (osteomylitis) and since april 1999 have been having intense treatment I had an Ilizarov fixator on for 54 weeks ,
I had five operations 94 to 96 then six operations 1999 to 2000, but my leg seems to be doing okay I still have some problems but I still have my limb (I could have lost it due to the nature of the injury) so we thought it was all behind us then we found out about the valve replacement ,I will make a list of things I want too ask the Dr I will post again if I need too ask anything before then Thank you too All
Jan

 

[Susan in FL]

Hi Jan! Yes, this is certainly the right place! I had my aortic valve replaced with a St. Judes mechanical 2-1/2 years ago. I had a congenital heart defect --bicuspid valve. Had always had the murmur, but never diagnosed with "anything important" until a year before the surgery. Which valve to use is a function of your lifestyle, age, etc. I chose the mechanical as I would rather deal with the coumadin than face another surgery in 5-20 years. My valve should go as long as I do! The anti-coagulant therapy may be a slight inconvenience, but not that big of a deal for me. I go to a coumadin clinic and get instant results and changes if necessary. I'm considering a home unit. I think your doctor was just being "safe" in giving you death statistics. Sure anything can happen (even while riding your bicycle), but it is the exception, not the rule. NO surgery is without risks, but a good heart surgeon can perform valve replacement practically with his eyes closed. An ordinarily otherwise healthy person will breeze through both the surgery and recovery. It is not a painful surgery (as long as you don't sneeze for a while afterwards!) like knee surgery. And you have no "invalid" period--you get up and walk right away and breathe, breathe, breathe!!! I'm sure others on this site will have a lot of information as well. But rest assured, it's really not such a terrible thing. And sure beats the alternative! You will feel so much better--even if you don't t hink you feel too bad now--afterwards! Good luck and keep us posted! Peace, Susan

 

[Dan O'Brien]

Jan,

Welcome to the site. Your questions will surely be answered by pros of the surgery, as opposed to medical professionals who lack the knowledge of the experience itself. This site is priceless in learning how to prepare , how to cope, and how to enjoy life after such a major surgery. Most will tell you that the waiting before surgery is the hardest part. Don't fret over the percentages. They are on your side in a big way. The other side of the mountain is a pretty neat place. Best wishes to you as you discover more about your condition. Information certainly helped calm my anxieties about this surgery.

 

[Diana]

Miitral/aortic

Miitral/aortic

Hello Jan

I am down the road from you in Manchester and right now await the call to have my mitral valve repaired or replaced. The aortic valve will need doing too, in time, and the surgeon would prefer to try and preserve my mitral valve if he can until then.

Its true, you will get wonderful support on this site. People are so kind and informative. For me, the idea of a repair is preferable as I would like to get off Warfarin (Coumadin). At the moment I am in trouble with this drug and the hospital is having problems stabilising the level. I had a major bleed and was admitted for two days and now have to go to the clinic every two days. Your consultant may have decided that your aortic valve must be replaced. I send you my best wishes and support.
Diana

 

[McCln]

It can be terriable feeling at first when told about replacement surgery, but asking questions will educate you to the fullest. You are pointed in the right direction here. I have been waiting for six months myself and will soon be getting a date for surgery. I live in the US and am a bit nervous, but that is normal. You just ask away here and be sure to ask your cardiac doctor and surgeon. You need to be informed of every aspect available to you. And there are many different things to consider. You just have be educated. You will do fine and come and ask anything here anytime. I am new here myself and everyone is friendly. Later.

 

[Kevin M]

Jan, I've had two valve replacements. In my opinion, the worst things are:

-the first two days, but it's not as bad as you might expect.
-the scary day before surgery.
-the long drawn out wait and possible postponement of surgery.
-fretting about the decision of which procedure is best for you (probably not difficult for most, but I struggled with it).

The mortality figure was quoted to me as 3% for the first operation and 5% for the second. These numbers include the elderly and people with other serious complications, so don't worry about this. A positive attitude will get you everywhere!

I think you will find there are a large number of very supportive people here who are very willing to answer whatever questions we can. You don't have to go through this alone; even though we aren't there in person, there are people who care and will be here for you.

Don't panic, you'll get through this. Welcome to the group.
Kev

 

[Turkey Hunter]

Welcome

Welcome

Hello & Welcome, Jan.

I can't speak for anyone else, but when the doc at Cleveland Clinic told me i would be needing surgery, I felt the same way. I was kicking myself when I got home, because that was when all of the questions started to pop into my head and i didn't ask anything while in his office.
So, I sat down and started a list of questions. I carried it with me everywhere, so when I would think of something....I could write it down.

I encourage you to ask alot of questions revolving around the valve type he is telling you you have to have. I know there are a few here who didn't have a choice on their valve type due to the emergecy state of their case. I believe a doctor should not tell you the type you have to have, the doctor should inform you of your otions, answer your questions and help advise to what their oppinion is regarding valve type. But in the end, it is a personal choice and totally up to you.

All of here chose our valve type for different reasons. I chose the Ross Procedure because it seemed to me to be the best choice for a 27 year old very active man, and I was scared to death of Coumadin. Coumadin doesn't scare me so much anymore after speaking with so many of my friends here. It is very managable.

Read through posts and gather up more questions and we all will be happy to help, if we can.

God Bless,

Ben

 

[Jan]

A new member

A new member

Hello Everyone
I am so glad I found this wonderful site It has helped me to understand so much .I now Know what to expect with the surgery I see the Surgeon on July 31st and have a list of questions too ask him , on reading the posts I feel a mechanical valve will be my first choice But I will discuss it with the surgeon, and see what he recommends
Many thanks to all who have given me advice and support I would never have got this far without you all
I send my best wishes to all and wish a speedy recovery tp all who have recently had surgery
God Bless You All
jan